My story of how my world was changed on April 25, 2012 when I was told I had breast cancer at age 38. I am sharing my story as a way of helping myself cope with the range of emotions that surround receiving this shocking diagnosis. I was not expecting this at all. If I can also help someone else going through this in the process, that would be icing on the cake.
Tuesday, November 12, 2013
One Year Since My Last Chemo
Wohoooo!!!! November 7th was one year since my last chemo!!! Here's to many more!
Sunday, July 28, 2013
Chemotherapy Side Effects - Adriamycin and Cyclophosphamide (AC Chemo)
Everyone has different chemo side effects. I thought for "fun" I would list mine here. Adriamycin and Cyclophosphamide (Cytoxan) were given together so I don't know what side effects were from which one, but I think these two are often given together anyway.
Side Effects from Adriamycin and Cyclophosphamide Chemo
Side Effects from Adriamycin and Cyclophosphamide Chemo
- Tiredness, fatigue. Not much that can be done for this
- Yucky feeling. Not much that can be done.
- Red to pink urine. I drank a lot of water and went pee as soon as the urge hit because UTI's are more common on AC Chemo. Yes, get up in the middle of the night if you have to go. It is worth the trouble.
- Feeling "hungover" for a week - no motivation to do anything, hard to focus/concentrate, just want to sit there and not move. This is probably why adriamycin is named the Red Devil. It is horrible. Not much to do for this one but it does go away. Thankfully I was able to be home on disability. If you have the chance to do the same, I say take it. There are no medals awarded for those that continue to work and push themselves to do their normal things during chemo.
- Hair Loss - it happens around day 14 after your first chemo. I started to have major shedding on day 12 and cut it all off and donated it on that day. I had a nice wig and several hats and scarfs. It was winter so I slept in a scarf or hat to keep my head warm.
- Heightened sense of smell - I call it my "supersonic" smelling which I understand makes no sense, but everything smelled so strongly. I could smell cigarette smoke (which I hate anyway) from a mile away, ok maybe not a mile but from really far away. I also couldn't stand the smell of some plants that were growing in my area. They had this really strong musty smell that when I smelled it would feel like someone was sticking needles up my nose. I also couldn't stand the smell of lots of food.
- Food Aversions - oh, let me count the foods I didn't like on AC Chemo-
- Coffee! I LOVE love LOVE coffee and at first had no desire for it, then after a few rounds it smelled good and I got really bad heartburn afterwards.
- Acidic foods
- the only things I did like were plain chicken breast, potatoes in any form (including plain lay's potato chips) apples, rice and avocado. Avocado saved me! So yummy, easy on the stomach and has fiber, protein and good oils.
- soda (I'm not complaining about this one)
- the aversions got worse with each treatment
- Dryness - dry skin, dry mouth, thirsty,dry eyes
- For Dry Skin, I got some really good unscented lotion and gooped it on, and often. 10 full pumps after the shower!
- Dry Mouth - Biotene is awesome. I could totally do a commercial for biotene cause I loved it during chemo. Totally saved me
- Dry Eyes - not horrible, but they were dry. Regular eye drops worked.
- I was thirsty often. This isnt that bad cause drinking water on chemo is a good practice and helps with other side effects. One time I remember drinking water and it tasted like it was the best thing in the world to me.
- Constipation - Holy constipation batman! I am not the praying type, but I prayed I would poop. Yeah, it was that bad. I ate fiber one cereal every morning and took stool softeners. Avocado also has fiber.
- Stomach issues. The stereotype is that you will be vomiting all day every day. I never vomited. I was nauseous twice. I had horrible heartburn/sour stomach/food aversions. I was given pepcid and prilosec and they helped, but I still ended up eating really bland simple food and having issues.
- Insomnia - steroids are given to prevent allergic reaction and they have their own set of side effects. Insomnia is one of them. I didnt have it too bad, but I did go to bed late and wake up early and would often wake up in the middle of the night too. Insomnia is worse the first few days (when you take the steroids) but it can strike at any time. Some people dont sleep at all for a few days. I was lucky and did sleep.
- Hunger/Weight gain. This is mainly due to the steroids. There were a few days that all I did all day was stuff my face. And this is hard when you have a lot of food aversions and smell aversions. But I still managed to find stuff to eat. Cheese and pasta and avocados. It was hard to know what would taste good/sit well. I felt like I didnt know what foods I liked anymore and heard complaints that I didnt eat what I bought (cause it didnt sound good later or go down like I wanted it to).
- Swallowing issues. I actually went to Urgent Care for this one. I couldnt swallow. I was starving but couldnt eat. I was thirsty but couldnt drink. Swallowing saliva hurt. When I couldnt swallow water I new I had to go to the doctor. The stupid urgent care doctor looked at me and said there was nothing wrong. It did feel like the tightness was lower down on my esophagus but he was ready to walk out without doing anything for me. Um, no. He gave me some lidocine rinse. It helped but I had to gargle with it immediately before eating, then eat really fast while not being able to taste the food cause my tongue was also numb. But I was able to get food down and make my stomach stop grumbling. I also had a lot of protein shakes about this time. And the swallowing issues started after the 2nd or 3rd chemo and only lasted a day or two (like day 7 or 8 past chemo)
- Mouth Sores - I had them for a couple of days after each chemo. Around days 7-9, same as the swallowing issues and the lidocaine rinse was applied directly to the sore and was a lifesaver. I had one on the back of my tongue that really hurt.
- Anxiety about the next treatment. I had AC every 3 weeks and the first week I felt like crap. The second week I felt better (comparatively) but my counts were low and I had mouth sores and swallowing issues, and the last week I started to feel like me again. Just when I started to feel good is when I would have the next treatment. Imagine getting the worst flu of your life, being in bed for 2 weeks then knowing you will get this "flu" again. It messes with your head. I even cried as the nurse administered chemo number three cause I did not want to feel bad again. Thankfully that round had the fewest side effects.Feeling isolated - people were trying to contact me and make plans, however it was hard because I didnt know how I would feel from day to day. Every day was different. By the last round I got better at predicting how I would feel, but there were still surprises.
- I have some scarring on my arm that I had the infusion. My arm was falling asleep during my second Adriamycin infusion. The nurse stopped and had me move my fingers but there is still some scarring. I had most of my infusions with the IV on my left hand. I have some scarring from the taxol too and I cant wear my ring on that finger. I think it is in part because there is some damage and in part because of the weight gain from Taxol.
These are the side effects I had after my chemos and how I survived them. I created this post to help someone else that is either going through chemo or planning to do it soon. When I was first diagnosed I was looking for real stories like this because the doctors tell you ALL the side effects that you could have and most people do not have all of them.
I am almost 8 months post my last chemo (I had Taxotere/taxol after AC) and I am doing well. My hair is growing, slowly. My stomach is mostly back to normal (I do have some issues with really acidic or spicy foods but it is rare and manageable), my mouth is mostly normal (still dont like soda and cola makes my mouth feel tender afterwards) and I cant wear my ring, well I can wear it but it is hard to take it off. I am not the same as I was before chemo but I am doing much better and it is very manageable.
Saturday, July 27, 2013
One Year Follow Up Mammogram
Sorry for the long absence. I have been trying to live my life again. And I had a scare. Stupid cancer. I had my annual Mammogram and on the one year anniversary of my first chemo (May 16th) they called me to tell me that they found something suspicious on my "good" breast and needed to do a biopsy. I had intended to write a great post about the difference a year can make, but then I was right back in the middle of all the cancer crap again.
The worst part was they told me the first available appointment for an ultrasound biopsy was like 3 weeks away. And that is when I lost it. I was on the phone with the lady making appointments crying my eyes out and yelling at her that I just finished chemo and radiation for breast cancer and I absolutely could not wait 3 weeks for an appointment. I feel bad for yelling at her, but I think that unless you have been on the wrong side of bad news you do not know how much it really messes with your head. Waiting 3 weeks to know if I have to go through the same crap I did the last year would be mental torture. Thankfully she put me on the waiting list for an earlier appointment and ended up calling me later that day to say they had an opening the next day.
I was scheduled for an ultrasound guided biopsy, same as I had when I was diagnosed. This time they looked for the suspicious area that was seen on the mammogram and could not find it. That is good news and bad news. The good news is that maybe it is scar tissue from my surgery or something else benign. The bad news is they cant test it to see if it is cancer unless I have a stereostastic biopsy. A stereostastic biopsy is one that you lay face down on a table with your breast hanging down through an icehole cutout. Down below they put your breast in a mammogram, take a picture and keep you in the compression until it is developed, do this a couple more times and then when they are confident they can sample the right area, they stick a giant needle in there to do the biopsy. They gave me anesthetic in the beginning but when it was time to stick the needle in there it hurt. Really bad. So they gave me more happy juice and I was ok. It was sore for a few days and there was a little lingering tenderness for a couple of weeks. The scar still looks a little red.
I had the biopsy on a Thursday and figured they would not call me with results until Monday. On my way home on Friday my oncologist called me to tell me the good news. It was NOT cancer. It may have been scar tissue or who knows. I will go back for another mammogram in 6 months. I was really happy that my doctor called me after 5pm on a Friday to give me my results. She said she was almost ready to leave and checked to see if my results were in. Thankfully I have integrated bluetooth in my car so I was able to answer the call while driving home. And thankfully I was only about 2 blocks away from home when she called cause there were happy tears flowing. I almost forgot what happy tears felt like.
I am still not out of the woods. Cancer is one mean bleep bleep bleeep bleeep. I am thankful for every day and fully intend to be one of those success stories, but you never know with cancer.
I have been working a lot, relaxing a lot and trying to grow some hair. I do have some hair and am very thankful for that but it is growing a lot slower than I would like. I am trying to live my life again and do things that have nothing to do with cancer. For the most part I am doing well, but I stress over every little twinge or pain.
I'm getting the urge to go on vacation again . . . time to start planning. Researching vacation places is a lot more fun than researching cancer treatments, symptoms and side effects (though I still do that too).
The worst part was they told me the first available appointment for an ultrasound biopsy was like 3 weeks away. And that is when I lost it. I was on the phone with the lady making appointments crying my eyes out and yelling at her that I just finished chemo and radiation for breast cancer and I absolutely could not wait 3 weeks for an appointment. I feel bad for yelling at her, but I think that unless you have been on the wrong side of bad news you do not know how much it really messes with your head. Waiting 3 weeks to know if I have to go through the same crap I did the last year would be mental torture. Thankfully she put me on the waiting list for an earlier appointment and ended up calling me later that day to say they had an opening the next day.
I was scheduled for an ultrasound guided biopsy, same as I had when I was diagnosed. This time they looked for the suspicious area that was seen on the mammogram and could not find it. That is good news and bad news. The good news is that maybe it is scar tissue from my surgery or something else benign. The bad news is they cant test it to see if it is cancer unless I have a stereostastic biopsy. A stereostastic biopsy is one that you lay face down on a table with your breast hanging down through an icehole cutout. Down below they put your breast in a mammogram, take a picture and keep you in the compression until it is developed, do this a couple more times and then when they are confident they can sample the right area, they stick a giant needle in there to do the biopsy. They gave me anesthetic in the beginning but when it was time to stick the needle in there it hurt. Really bad. So they gave me more happy juice and I was ok. It was sore for a few days and there was a little lingering tenderness for a couple of weeks. The scar still looks a little red.
I had the biopsy on a Thursday and figured they would not call me with results until Monday. On my way home on Friday my oncologist called me to tell me the good news. It was NOT cancer. It may have been scar tissue or who knows. I will go back for another mammogram in 6 months. I was really happy that my doctor called me after 5pm on a Friday to give me my results. She said she was almost ready to leave and checked to see if my results were in. Thankfully I have integrated bluetooth in my car so I was able to answer the call while driving home. And thankfully I was only about 2 blocks away from home when she called cause there were happy tears flowing. I almost forgot what happy tears felt like.
I am still not out of the woods. Cancer is one mean bleep bleep bleeep bleeep. I am thankful for every day and fully intend to be one of those success stories, but you never know with cancer.
I have been working a lot, relaxing a lot and trying to grow some hair. I do have some hair and am very thankful for that but it is growing a lot slower than I would like. I am trying to live my life again and do things that have nothing to do with cancer. For the most part I am doing well, but I stress over every little twinge or pain.
I'm getting the urge to go on vacation again . . . time to start planning. Researching vacation places is a lot more fun than researching cancer treatments, symptoms and side effects (though I still do that too).
Sunday, April 7, 2013
Things I am Thankful For - Not Just on Thanksgiving but Everyday
- Being Alive. This past year has taught me that even when things are not going well, at least I am alive to experience them. What I once considered a bad day pre-chemo is now one that I wouldn't mind having. Perspective is everything.
- My New Perspective On Life. I always thought I was living in the moment and experiencing everything, cancer has a way of making you want to go out and do things sooner rather than later.
- Modern Medicine including chemotherapy, anti-nausea medicine and stool softeners. Yeah, I said stool softeners . . . chemo can really mess with that. It is on the long list of side effects.
- That I was able to find out who really cares and who could care less about me. Sadly it had to take cancer for me to really see peoples true colors.
- For the Best Sisters a girl could ask for. I have no real sisters (or brothers for that matter) but I found the best surrogate sisters online. They all have breast cancer too and they "get it" in ways that only someone who has been through chemo, surgery and radiation can and it is a place where I can "talk" about anything and I mean ANYTHING no topic is too gross or off limits with these lovely ladies. I am sane today because of them and love them more than I ever thought I would love a group of ladies I never met before in real life.
- That I am done with chemo and am PFC. PFC is Post Final Chemo, one of the many cancer related acronyms and some people use a different word for the "F"
- That I chose to do chemo first and felt my tumor shrinking away after each treatment.
- That I have good insurance, really good insurance.
- The many years that Julie brought happiness into this world. She is missed terribly but every minute she was here she made the world a better place.
- That I was not injured when a 20 year old kid ran a red light and plowed into my car totaling it. Cars are replaceable, I'm not.
- That insurance is giving me a fair value for my car.
- Turkey, cranberry sauce, sweet potatoes and pumpkin pie.
- Coffee, and that I can drink it now despite a 6 month chemo induced hiatus.
- Disability that allows me to pay my bills while recuperating.
- The Internet . . . what did we do before it?
- That one day I will have hair again.
- That despite losing my fingernails and toenails that my nails are growing back.
- That on chemo I never once vomited. I had IV antinausea medicine, antinausea pills, backup antinausea meds and even backup of the backup antinausea meds. And every time I saw a doctor or chemo nurse they would ask if I had nausea and reinforced several times that today there is no reason for me to suffer with nausea. Vomiting during chemo is now history. Not to mention that half of my chemo treatment didn't even cause nausea/vomiting.
- Pinterest. When my stomach wasn't feeling well I had to totally change my diet and often didnt know what I wanted to eat. Pinterest with tons of pictures of food really helped me think of new ideas for things to eat.
- Western Toilets. This can be filed in the random files . . . somehow I managed to remember a toilet I saw in China. I'm not even sure how to use this toilet (I had to go but chose to hold it). That reminded me how thankful I am for western toilets.
I'll admit I started this blog post around Thanksgiving but never got it posted (I have a lot of drafts) . . . I know I have more things to be thankful for but I will post this now so that I don't forget about it again.
Saturday, March 9, 2013
Radiation Healing
Yayyy I was done with radiation on February 19th :-) I went on this machine thirty one times - 25 whole breast radiation treatments and 6 boosts that are a different type of radiation that doesn't penetrate the skin as deeply.
My skin was pretty red and irritated afterwards. I kept putting the hydrocortizone on it for a few days then switched back to the Aloe Vera and I intermittently did Aquaphor too. It didn't really hurt much but did get darker and darker and then started peeling. The skin underneath was very pink and tender looking - I tried not to peel it more than I needed too and it is still peeling a little bit, more like flaking off in little bits and pieces. It is more annoying than anything.
Since I have scars on both side that looked the same before rads it is clear to me that the radiation side scars look a LOT better. They are almost non-existent. Even my SNB scar. Really. There is also some dark discoloration in my armpit and all around my breast, but I think over time that will fade. Or maybe I should say I hope that will fade cause it will be visible in a tank top or bathing suit. Oh but I have to be careful getting sun on it for the next year anyway. I am putting the Aloe Vera on daily cause I think it will help and that the skin is still peeling or is a little dry - I can't tell.
I started wearing deodorant again about a week or so after my last radiation. I am still afraid to shave under that armpit. I have some fine hairs on the upper part of my armpit - there are none on the bottom half and that skin is darker, even after the peeling.
My place gave me a certificate of completion of rads. I think it was nice of them . . . I just feel that completing chemo was a bigger achievement. I did get to ring the bell when I was done with chemo . . . but a certificate would have been nice too. I think after 31 days of seeing me they think more about these things? I even got a hug from one of the technicians on my last day. 31 is a lot . . . but prostate cancer patients have to have 38!!!
Here is a picture of the outside door of the radiation room I went to most often.
I am going to try and post some pictures of my armpit and from the radiation place, if my chemo brain will remember.
I'm happy to be done with radiation. Am I glowing?
My skin was pretty red and irritated afterwards. I kept putting the hydrocortizone on it for a few days then switched back to the Aloe Vera and I intermittently did Aquaphor too. It didn't really hurt much but did get darker and darker and then started peeling. The skin underneath was very pink and tender looking - I tried not to peel it more than I needed too and it is still peeling a little bit, more like flaking off in little bits and pieces. It is more annoying than anything.
Since I have scars on both side that looked the same before rads it is clear to me that the radiation side scars look a LOT better. They are almost non-existent. Even my SNB scar. Really. There is also some dark discoloration in my armpit and all around my breast, but I think over time that will fade. Or maybe I should say I hope that will fade cause it will be visible in a tank top or bathing suit. Oh but I have to be careful getting sun on it for the next year anyway. I am putting the Aloe Vera on daily cause I think it will help and that the skin is still peeling or is a little dry - I can't tell.
I started wearing deodorant again about a week or so after my last radiation. I am still afraid to shave under that armpit. I have some fine hairs on the upper part of my armpit - there are none on the bottom half and that skin is darker, even after the peeling.
My place gave me a certificate of completion of rads. I think it was nice of them . . . I just feel that completing chemo was a bigger achievement. I did get to ring the bell when I was done with chemo . . . but a certificate would have been nice too. I think after 31 days of seeing me they think more about these things? I even got a hug from one of the technicians on my last day. 31 is a lot . . . but prostate cancer patients have to have 38!!!
Here is a picture of the outside door of the radiation room I went to most often.
I am going to try and post some pictures of my armpit and from the radiation place, if my chemo brain will remember.
I'm happy to be done with radiation. Am I glowing?
Friday, February 15, 2013
Radiation Update
I am getting close to being done with radiation. As a reminder, I am having radiation because I had a lumpectomy and that is the standard treatment if you have a lumpectomy. I was lucky enough that the cancer was not in my lymph nodes so I only have radiation in two positions (vs three if my nodes were involved).
The actual radiation treatment is about twenty one seconds in each position, so about 42 seconds total. Yep, that quick. I dont know the details behind it but I do know there is a physics department that reviewed my case prior to starting. And the seconds may be off a little cause that is just me counting once I hear the noise that the radiation has started. The technicians did say that they do not do individual treatments longer than a minute. I know some other people with different cancers get up to 7 positions but fewer seconds in each position.
I go through a lot to get those 42 seconds of treatment . . . the radiation oncology facility is an hour away from my home or work. That is a round trip of 2 hours. There is a shuttle going from my local Kaiser facility to the Kaiser in Ontario. The shuttle bus is more fun that I thought it would be. The people on there definitely make an unfortunate situation bearable and sometimes a lot of fun. Radiation is 5 days a week and there are people with all different types of cancer on the shuttle bus. I notice a difference in the number of radiation treatments and the type of cancer. So far on the shuttle people with Prostate cancer seem to have the most with 38 treatments (and 7 positions) and Lymphomas seem to have about 15-18. There is a wide range for Breast Cancer . . . some of us have 31, while others have about 15. I know I was given the choice of doing it in 31 or 20, and there seems to be a difference if you had a lumpectomy or a mastectomy. One thing I have learned through all of this is that the doctors develop a personalized treatment plan, which is why there is such a difference in the treatments.
I mentioned above that I had the choice of doing my treatment in 31 or 20 treatments. The 31 treatments are not all the same - 25 are whole breast radiation and 6 are boosts that are targeted at the scar area (or in my case area where the tumor was removed since I have scars in a different area since I had a reduction too). It is a similar case for the 20 treatments - 16 are whole breast radiation and 4 are boosts. In the 20 treatment plan, also called Hypofractionated, each radiation treatment has more radiation per treatment but less overall radiation. The 31 treatment plan, also called standard treatment plan, has a total of 50 Greys (Gy) of radiation at 2Gy/ whole breast treatment (not including the 6 boosts). The 20 radiation plan has a total of 42.5 Gy of radiation at 2.66Gy/ whole breast treatment (not including the 4 boosts). I asked the doctor if there were any studies done on this and he gave me the link to this study from the New England Journal of Medicine. I read the article carefully and debated a lot on which one to do and decided on the 31 treatment plan (25 whole breast + 6 boosts) because in the aforementioned study there was a significant difference in the local recurrence of people with a high grade tumor. My tumor was high grade (grade 3) and the difference in the study was about 10% higher local recurrence rate for those with a high grade tumor that had the Hypofractionated treatment (16 whole breast). I asked my doctor about this and he said the consensus was that this was not really a concern. I asked if there were further studies and he said there were not. I decided that an extra 11 days of going to Ontario was worth the chance of lowering my risk of local recurrence. It may be that the results were not really indicative of the true implications since the study sample size was small but I decided that peace of mind in knowing I made the best decision with the information available to me at the time was worth the extra 11 days of treatment.
One thing I have learned through this whole process is that you have to be your own advocate regarding your treatment. I know I made my oncologist upset when I asked some very direct questions regarding my treatment but in reality I think if you dont make them think twice or question them regarding treatment to your body that you arent doing yourself justice. I questioned my dentist too . . . and I avoided having a bridge because I made him think outside of the box. I also think of it like the time I went to China and was at their market that was similar to a swapmeet where all prices were negotiable. I learned I had to insult them by offering a really low price in order to end up with a good price. I need to make sure my oncologist knows this, but every time I see her it is a whirlwind and I barely have time for my questions.
Back to radiation - I have finished 24 of my 25 whole breast treatments and will complete the 6 boosts on 2/19/13. I even get to have treatment on the Presidents Holiday. I am having some skin reactions. About treatment 18 I started having some pain in my armpit. They are not targeting my armpit but it is being affected due to its proximity to my breast. It is only the lower half of my armpit that receives treatment. It started to look very dark and be painful. I have been good about putting the Aloe Vera on the area 2 to 3 times a day but it was hurting and looked really dark. The doctor said it may have been my hair trying to regrow but I didnt believe him. Then a couple days later I noticed my skin start peeling. In the dark area there were patches of pink. I met with a Physicians Assistant who prescribed 2.5% Hydrocortizone as the Aloe Vera will sting once the skin breaks open. I think that was part of the pain, that the aloe vera was getting in the skin where it was starting to break open. The PA mentioned that the first areas to have an issue are the ones with skin on skin contact - in my case the armpit and the fold of the breast. Well thankfully the fold of my breast does not touch anymore since my surgery. I was also told I could use Aquaphor lotion on the area. I personally hate how greasy the Aquaphor is but I have been using it along with the Hydrocortizone and using the Aloe Vera on all areas except my armpit.
I am told that the skin can continue to get worse for two weeks after I am done with treatment. The rest of the treatment area is looking pinkish/brownish, kindof like my skin looks after going to the beach but the color is not evenly distributed - some areas look normal, some are a little brownish, some are pinkish and then the armpit is very dark and my sentinel node biopsy scar is almost black with a little pink where it is starting to break open.
The actual radiation treatment is about twenty one seconds in each position, so about 42 seconds total. Yep, that quick. I dont know the details behind it but I do know there is a physics department that reviewed my case prior to starting. And the seconds may be off a little cause that is just me counting once I hear the noise that the radiation has started. The technicians did say that they do not do individual treatments longer than a minute. I know some other people with different cancers get up to 7 positions but fewer seconds in each position.
I go through a lot to get those 42 seconds of treatment . . . the radiation oncology facility is an hour away from my home or work. That is a round trip of 2 hours. There is a shuttle going from my local Kaiser facility to the Kaiser in Ontario. The shuttle bus is more fun that I thought it would be. The people on there definitely make an unfortunate situation bearable and sometimes a lot of fun. Radiation is 5 days a week and there are people with all different types of cancer on the shuttle bus. I notice a difference in the number of radiation treatments and the type of cancer. So far on the shuttle people with Prostate cancer seem to have the most with 38 treatments (and 7 positions) and Lymphomas seem to have about 15-18. There is a wide range for Breast Cancer . . . some of us have 31, while others have about 15. I know I was given the choice of doing it in 31 or 20, and there seems to be a difference if you had a lumpectomy or a mastectomy. One thing I have learned through all of this is that the doctors develop a personalized treatment plan, which is why there is such a difference in the treatments.
I mentioned above that I had the choice of doing my treatment in 31 or 20 treatments. The 31 treatments are not all the same - 25 are whole breast radiation and 6 are boosts that are targeted at the scar area (or in my case area where the tumor was removed since I have scars in a different area since I had a reduction too). It is a similar case for the 20 treatments - 16 are whole breast radiation and 4 are boosts. In the 20 treatment plan, also called Hypofractionated, each radiation treatment has more radiation per treatment but less overall radiation. The 31 treatment plan, also called standard treatment plan, has a total of 50 Greys (Gy) of radiation at 2Gy/ whole breast treatment (not including the 6 boosts). The 20 radiation plan has a total of 42.5 Gy of radiation at 2.66Gy/ whole breast treatment (not including the 4 boosts). I asked the doctor if there were any studies done on this and he gave me the link to this study from the New England Journal of Medicine. I read the article carefully and debated a lot on which one to do and decided on the 31 treatment plan (25 whole breast + 6 boosts) because in the aforementioned study there was a significant difference in the local recurrence of people with a high grade tumor. My tumor was high grade (grade 3) and the difference in the study was about 10% higher local recurrence rate for those with a high grade tumor that had the Hypofractionated treatment (16 whole breast). I asked my doctor about this and he said the consensus was that this was not really a concern. I asked if there were further studies and he said there were not. I decided that an extra 11 days of going to Ontario was worth the chance of lowering my risk of local recurrence. It may be that the results were not really indicative of the true implications since the study sample size was small but I decided that peace of mind in knowing I made the best decision with the information available to me at the time was worth the extra 11 days of treatment.
One thing I have learned through this whole process is that you have to be your own advocate regarding your treatment. I know I made my oncologist upset when I asked some very direct questions regarding my treatment but in reality I think if you dont make them think twice or question them regarding treatment to your body that you arent doing yourself justice. I questioned my dentist too . . . and I avoided having a bridge because I made him think outside of the box. I also think of it like the time I went to China and was at their market that was similar to a swapmeet where all prices were negotiable. I learned I had to insult them by offering a really low price in order to end up with a good price. I need to make sure my oncologist knows this, but every time I see her it is a whirlwind and I barely have time for my questions.
Back to radiation - I have finished 24 of my 25 whole breast treatments and will complete the 6 boosts on 2/19/13. I even get to have treatment on the Presidents Holiday. I am having some skin reactions. About treatment 18 I started having some pain in my armpit. They are not targeting my armpit but it is being affected due to its proximity to my breast. It is only the lower half of my armpit that receives treatment. It started to look very dark and be painful. I have been good about putting the Aloe Vera on the area 2 to 3 times a day but it was hurting and looked really dark. The doctor said it may have been my hair trying to regrow but I didnt believe him. Then a couple days later I noticed my skin start peeling. In the dark area there were patches of pink. I met with a Physicians Assistant who prescribed 2.5% Hydrocortizone as the Aloe Vera will sting once the skin breaks open. I think that was part of the pain, that the aloe vera was getting in the skin where it was starting to break open. The PA mentioned that the first areas to have an issue are the ones with skin on skin contact - in my case the armpit and the fold of the breast. Well thankfully the fold of my breast does not touch anymore since my surgery. I was also told I could use Aquaphor lotion on the area. I personally hate how greasy the Aquaphor is but I have been using it along with the Hydrocortizone and using the Aloe Vera on all areas except my armpit.
I am told that the skin can continue to get worse for two weeks after I am done with treatment. The rest of the treatment area is looking pinkish/brownish, kindof like my skin looks after going to the beach but the color is not evenly distributed - some areas look normal, some are a little brownish, some are pinkish and then the armpit is very dark and my sentinel node biopsy scar is almost black with a little pink where it is starting to break open.
Sunday, January 20, 2013
Radiation Therapy for Lumpectomy
The word Radiation is a scary word, but it is also a good word. Radiation therapy takes something that can be used negatively and refocuses it on healing and treatment, so I think of it as a hopeful word. I created a new online profile name when I started this journey . . . radioactivegirl. It was started after I had to have some tests in the nuclear medicine department and there were several radioactive signs around. In addition to my username it is my cancer fighting alter ego.
I started radiation therapy on Tuesday (1/8). If you have a lumpectomy you always have radiation for breast cancer. Some people with a mastectomy also have radiation if they have positive nodes, but for me I am having radiation because I had a lumpectomy to get the same survival rates as if I had a mastectomy, but I got to keep my breasts.
Preparation for radiation takes time. They put you on a machine and take some x-rays and do some mapping. They put these marks on my skin with a sharpie and then put some clear stickers over them. I was told to keep them on my skin until my next appointment a week later. I'm not sure exactly what they did but they mapped it and had the physics department review it. Then I went back and they did some stuff to make sure it was aligned correctly and removed the stickers and gave me 5 tattoos. Yep, tattoos or permanent markings. These arent the tattoos like you are thinking about - they are small black dots. The technician put some ink on my skin and then used a single needle for these medical tattoos. I looked at them afterwards and I have moles that are bigger than these tattoos. Before I had them I was thinking of having them removed after treatment because they will remind me of treatment. But I may keep them because someone made me think of these as battle scars. I am undecided at this moment, but even though they are small they are black and stand out among all my brown moles.
Radiation itself is usually a quick and painless process. I get undressed and into a gown. Then when I get called in to the radiation room with a giant radioactive sign and a 5 inch door I lie down on the table/bed thing. There are notches and groves so that your head is cradled and they put a triangular pillow under your knees and you put your hands above your head and there are braces to support them. There are laser beams of light that are pointed at your body and I believe they use those to lign up with your tattoos. I cant actually see what they are doing but they do always move me around a little. Then they leave the room and close the 5 inch thick door. The radiation machine starts making noise and there are lights flashing to indicate that the beam is on. Then they come in, the machine moves to another position and the process is repeated.
I am usually pretty calm until I hear the noise that indicates the beam is on and I start to breathe heavily and freak out a little. I always have my eyes closed and I try and think good thoughts. I also use this time to send people good thoughts. I don't really pray, but I do send people good thoughts and I figure that is a good a time as any to do that since I have some quiet alone time.
I have radiation in two positions and after the second one they tell me I can get up and go. It is totally painless and uneventful. This is repeated every weekday for a total of 25 times and then I get 6 boosts which I think are just targeting the area where the tumor was, not the whole breast. The most common side effects of radiation are reddening of the treatment area and fatigue. My radiation doctors recommend using 100% aloe vera gel. I have been using it religiously one to two times a day to prevent any radiation "burns" that arent really burns but look like a bad sunburn. If my skin does get red then the doctors have other things they can prescribe. In the meantime I am slathering on the aloe vera in hopes of preventing any skin reactions. I do see the doctor after every 10 days of treatment so they can monitor me.
So far I have had 9 out of 31 treatments and I do not really notice any reddening of my skin or have fatigue. I think, like chemo, that the effects are cumulative so that may come later but so far so good.
I started radiation therapy on Tuesday (1/8). If you have a lumpectomy you always have radiation for breast cancer. Some people with a mastectomy also have radiation if they have positive nodes, but for me I am having radiation because I had a lumpectomy to get the same survival rates as if I had a mastectomy, but I got to keep my breasts.
Preparation for radiation takes time. They put you on a machine and take some x-rays and do some mapping. They put these marks on my skin with a sharpie and then put some clear stickers over them. I was told to keep them on my skin until my next appointment a week later. I'm not sure exactly what they did but they mapped it and had the physics department review it. Then I went back and they did some stuff to make sure it was aligned correctly and removed the stickers and gave me 5 tattoos. Yep, tattoos or permanent markings. These arent the tattoos like you are thinking about - they are small black dots. The technician put some ink on my skin and then used a single needle for these medical tattoos. I looked at them afterwards and I have moles that are bigger than these tattoos. Before I had them I was thinking of having them removed after treatment because they will remind me of treatment. But I may keep them because someone made me think of these as battle scars. I am undecided at this moment, but even though they are small they are black and stand out among all my brown moles.
Radiation itself is usually a quick and painless process. I get undressed and into a gown. Then when I get called in to the radiation room with a giant radioactive sign and a 5 inch door I lie down on the table/bed thing. There are notches and groves so that your head is cradled and they put a triangular pillow under your knees and you put your hands above your head and there are braces to support them. There are laser beams of light that are pointed at your body and I believe they use those to lign up with your tattoos. I cant actually see what they are doing but they do always move me around a little. Then they leave the room and close the 5 inch thick door. The radiation machine starts making noise and there are lights flashing to indicate that the beam is on. Then they come in, the machine moves to another position and the process is repeated.
I am usually pretty calm until I hear the noise that indicates the beam is on and I start to breathe heavily and freak out a little. I always have my eyes closed and I try and think good thoughts. I also use this time to send people good thoughts. I don't really pray, but I do send people good thoughts and I figure that is a good a time as any to do that since I have some quiet alone time.
I have radiation in two positions and after the second one they tell me I can get up and go. It is totally painless and uneventful. This is repeated every weekday for a total of 25 times and then I get 6 boosts which I think are just targeting the area where the tumor was, not the whole breast. The most common side effects of radiation are reddening of the treatment area and fatigue. My radiation doctors recommend using 100% aloe vera gel. I have been using it religiously one to two times a day to prevent any radiation "burns" that arent really burns but look like a bad sunburn. If my skin does get red then the doctors have other things they can prescribe. In the meantime I am slathering on the aloe vera in hopes of preventing any skin reactions. I do see the doctor after every 10 days of treatment so they can monitor me.
So far I have had 9 out of 31 treatments and I do not really notice any reddening of my skin or have fatigue. I think, like chemo, that the effects are cumulative so that may come later but so far so good.
Saturday, January 5, 2013
Oncoplastic Breast Reduction Surgery Recovery
All in all the recovery has been much easier than I thought. I did have a horrible sore/dry throat that showed up the morning after surgery. It hurt to talk, it hurt to swallow, it hurt to eat it just plain hurt. Kindof like the worst sore throat from a cold, but I didnt have the other cold symptoms. Whispering hurt and I resorted to using the fewest words possible and doing a lot of pointing. My throat was pretty battered from chemo and the breathing tubes really irritated it. I didnt really eat much between my stomach issues and the sore throat :-(
The day after surgery I had an appointment with the Plastic Surgeon's nurse to change my dressings (they would have removed the drains then too, but I didnt need any drains). The nurse did a quick check, changed some of the gauze and made sure I had feeling in the nipple. She also told me that over the counter sore throat drops would help me. On the way home we stopped at the store and got the strongest Cepacol lozenges they had. Sweet relief. I used them for the next day or two until it felt "normal" again. I put normal in quotes cause I still have some throat irritation and sensitivity to acidic foods that are a result of chemo.
After the initial issues with the pain medicines and my stomach I was afraid to take more, but it turns out I didn't need it. I was very surprised. I had some tenderness and discomfort but there were also times that I "forgot" about it and reached for something and was reminded that I just had surgery. I didnt take any more pain medicines after that, yippee.
I didn't really lift anything or reach for anything for a couple of days. My instructions said to use common sense with what you do. I didn't push it - I reached for things and if it hurt I stopped and asked someone to get it for me.
The biggest complaint I had was itching. The incision along the bottom fold of my breast itched. It would be fine then all of a sudden it would itch like crazy. I had steri strips along all incisions and I was wearing a sports bra 24/7 as instructed. I couldn't really scratch but pulling up the bra and rubbing along the steri strips helped. The suture knots or whatever you call the fishing line looking stuff that was taped down was what itched the most. I had them removed about two weeks after surgery and the itching mostly stopped at that time so I think that was what was causing the itching.
I still have some issues in the car, mostly when I ride in a truck. When we go over a bump or the road is not so smooth I feel it in my breasts. And the rough roads I am talking about are the same roads I have driven on for years with no issues and I only notice it in a truck, my guess is because the suspension is different than in a car. It isnt all roads all the time, just older sections of the freeway or potholes that have been filled or even somewhat newer roads that are kindof wavy (I never paid that much attention before). I can deal with it, it is just uncomfortable.
My instructions also said to massage and put lotion on the incisions twice a day to help break down the scar tissue. I do notice that the scars, particularly along the fold do look like there is some scar tissue forming and I hope that the massaging will help. I have not done it 2x/day every day but I am trying. The massage does not feel good as it does make it feel sore afterwards. I haven't been doing it because I forget to do it, a lame excuse I know :-(
I am now 4+ weeks out from surgery and I am happy with the results. I am noticing that the nipple is starting to look oblong and I hope that is just because some areas are settling differently than others. I first noticed this on the cancer side but am now seeing a little on the non cancer side.
I'm not exactly sure how much smaller I am but they are smaller and firmer and more perky. So far I am mostly happy with the results. The slightly oblong nipples do not make me happy but I know my Plastic Surgeon did make some adjustments because she was compensating for the effects of radiation. I'll reserve my final thoughts for after radiation.
If you found this blog because you are thinking of having an oncoplastic reduction feel free to ask me any questions you may have.
The day after surgery I had an appointment with the Plastic Surgeon's nurse to change my dressings (they would have removed the drains then too, but I didnt need any drains). The nurse did a quick check, changed some of the gauze and made sure I had feeling in the nipple. She also told me that over the counter sore throat drops would help me. On the way home we stopped at the store and got the strongest Cepacol lozenges they had. Sweet relief. I used them for the next day or two until it felt "normal" again. I put normal in quotes cause I still have some throat irritation and sensitivity to acidic foods that are a result of chemo.
After the initial issues with the pain medicines and my stomach I was afraid to take more, but it turns out I didn't need it. I was very surprised. I had some tenderness and discomfort but there were also times that I "forgot" about it and reached for something and was reminded that I just had surgery. I didnt take any more pain medicines after that, yippee.
I didn't really lift anything or reach for anything for a couple of days. My instructions said to use common sense with what you do. I didn't push it - I reached for things and if it hurt I stopped and asked someone to get it for me.
The biggest complaint I had was itching. The incision along the bottom fold of my breast itched. It would be fine then all of a sudden it would itch like crazy. I had steri strips along all incisions and I was wearing a sports bra 24/7 as instructed. I couldn't really scratch but pulling up the bra and rubbing along the steri strips helped. The suture knots or whatever you call the fishing line looking stuff that was taped down was what itched the most. I had them removed about two weeks after surgery and the itching mostly stopped at that time so I think that was what was causing the itching.
I still have some issues in the car, mostly when I ride in a truck. When we go over a bump or the road is not so smooth I feel it in my breasts. And the rough roads I am talking about are the same roads I have driven on for years with no issues and I only notice it in a truck, my guess is because the suspension is different than in a car. It isnt all roads all the time, just older sections of the freeway or potholes that have been filled or even somewhat newer roads that are kindof wavy (I never paid that much attention before). I can deal with it, it is just uncomfortable.
My instructions also said to massage and put lotion on the incisions twice a day to help break down the scar tissue. I do notice that the scars, particularly along the fold do look like there is some scar tissue forming and I hope that the massaging will help. I have not done it 2x/day every day but I am trying. The massage does not feel good as it does make it feel sore afterwards. I haven't been doing it because I forget to do it, a lame excuse I know :-(
I am now 4+ weeks out from surgery and I am happy with the results. I am noticing that the nipple is starting to look oblong and I hope that is just because some areas are settling differently than others. I first noticed this on the cancer side but am now seeing a little on the non cancer side.
I'm not exactly sure how much smaller I am but they are smaller and firmer and more perky. So far I am mostly happy with the results. The slightly oblong nipples do not make me happy but I know my Plastic Surgeon did make some adjustments because she was compensating for the effects of radiation. I'll reserve my final thoughts for after radiation.
If you found this blog because you are thinking of having an oncoplastic reduction feel free to ask me any questions you may have.
Tuesday, January 1, 2013
Goodbye 2012, Hello 2013!!!
2012 started out as a good year for me but was marked by bad news and tough times . . . and then I found out I had breast cancer and had to have chemo.
Chemo is by far the hardest thing I have ever been through and I have been through a lot. I am 7 and a half weeks out from chemo and I struggle with a lot of things I shouldn't, newborn babies have more hair than I do, and I don't have the stamina or focus that I used to. But I am alive and I showed Cancer that it is not welcome here.
I am not one to make New Year's Resolutions but I do want to make some changes in my life. First I want to do more things. Do things that make me happy, do things that scare me, do things that remind me I am alive. I want to experience all I can with each passing day cause I never know if it will be my last.
I want to go Ice Skating more - I started skating as an adult and took lessons off and on for 10 years. I want to get back to going. But I can't right now - I have horrible balance and muscle tone. soon though, really soon.
I want to travel more. I have been lucky enough to be able to travel to lots of places and I want to continue that.
I want to feel motivated to post happy things on Facebook. I am currently posting negative or complaining posts. I want to change that. Correction - I will change that. I know the better I feel the happier my posts will be, although my favorite post all year was my Pathology Post.
I guess what I am rambling about is that I just want to make sure I live every day to its fullest :-)
Chemo is by far the hardest thing I have ever been through and I have been through a lot. I am 7 and a half weeks out from chemo and I struggle with a lot of things I shouldn't, newborn babies have more hair than I do, and I don't have the stamina or focus that I used to. But I am alive and I showed Cancer that it is not welcome here.
I am not one to make New Year's Resolutions but I do want to make some changes in my life. First I want to do more things. Do things that make me happy, do things that scare me, do things that remind me I am alive. I want to experience all I can with each passing day cause I never know if it will be my last.
I want to go Ice Skating more - I started skating as an adult and took lessons off and on for 10 years. I want to get back to going. But I can't right now - I have horrible balance and muscle tone. soon though, really soon.
I want to travel more. I have been lucky enough to be able to travel to lots of places and I want to continue that.
I want to feel motivated to post happy things on Facebook. I am currently posting negative or complaining posts. I want to change that. Correction - I will change that. I know the better I feel the happier my posts will be, although my favorite post all year was my Pathology Post.
I guess what I am rambling about is that I just want to make sure I live every day to its fullest :-)
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