Winter 2013-2014 Rads
Comments
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rosecal & lovewins, emotionally I think we all have dark days, my dx is pretty damn scary, but I would be just as scared, I assume if I was stage 1 . I know going through the intense chemo treatments effects your body more than, what anybody could possibly know unless they experience it first hand. But we have no choice, and some how we get through it.
Rosecal, do not feel ashamed for your distress. I can relate, I feel they same way when I see a child dying of cancer ( on TV) trying to inspire others to be more loving or whatever...I am having a little pity party & this poor kid is not going to make it. It is a roller coaster of emotion that we really are not prepared for. I have also lost 20 lbs. Friends ask "so are you going to stay this skinny." It is a joke. I did not plan or want to lose 20 lbs...out of my control, they will never understand unless they have to go thru this nightmare. I hope they don't. I would give anything to feel normal or have my life back again. It will take time..I am bald, no eyelashes, which is the worst part, a couple of toe nails falling off...but can't wait to get in there & get radiated & start arimidex...new perspective, new life... -
rose, you should never feel badly about feeling the way you feel. We are all going about our lives and suddenly we are slapped upside the head with this diagnosis. We are expected to make these life altering decisions and we don't get much time to decide, and at the same time we try to put on a brave face for our families and friends - it's bound to give anyone meltdowns - I've had many. It's a traumatic event. You and lovewins are not alone. We are all here to get you through
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I have had meltdowns, too. Everyone is entitled to have a bad day every now and then. We have been slammed by all this and our lives will never be the same. Since I found my lump last summer I have lost 25 pounds. Not on purpose. To sick to my stomach to eat. My mother keeps telling me how great I look. She may be trying to make me feel better, but I don't. I would rather have my old life back. -
Thank you all for your encouragement. Sunday starts a new week and a new outlook. It's hard for me to ask for help, but I might give a call tomorrow. I'm thankful for this board to share my thoughts. -
TeamKim - my 1st rad was a month & a few days after my last chemo treatment. Chemo onc said I could schedule it to start whenever I felt ready, &. I called after 3 weeks, & met with the rad onc right before Thanksgiving, but of course the holiday meant I couldn't start treatment until December.
Oh & I'm not going to say I'm jealous of those of you who've lost weight from stress, but I've gained weight from first stress eating & then during chemo, the only thing that tasted normal was chocolate
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batcatlady, I've also gained weight. Eight pounds since the end of chemo. Once I got my taste buds back, everything tasted so good again.
Has anyone developed lumps after their lumpectomy? My scar is on the bottom - my tumors were five o'clock. At the end of the incision, on my side, I've got two small lumps. I didn't have them before surgery. I was wondering if anyone else had anything like that? Could it be from the swelling and incision? -
BatCat and SDB -- I am in the gainers club... Between craving comfort food and the steroid puffiness, I have put on about 12 lbs. Feel like a sausage stuffed into my jeans -- ugh! -
count me in the gainers club. I gained about 25lbs since being diagnosed and doing chemo. My weight levelled off after chemo. Part of it was the steroids, part of it was the grazing to keep the nausea at bay and part of it was that I kept eating the same as I was when I was training for a marathon with the exception that barely had the energy to go for a walk. I'm now waiting until after the new year to get back into shape and better eating habits. No point with the holidays just around the corner. I love to bake and I'm not going to deprive myself of home baked cookies!
SlowDeepBreaths - I too had a lumpectomy, but I don't have lumps near the incision on my breast. I do have a nice seroma (build up of fluid) in my armpit from the node dissection and my incision there looks lumpy. They did the stitches on the inside and I think that this is what I'm seeing. Maybe it's something similar in your case? -
Oncearunner, I didn't have any lymph nodes removed. The two lumps I'm feeling are actually right under the end of my breast incision. My incision goes almost to my left side. They are slightly under the incision and to the left of the end of it. Right where the bottom of your breast crease goes into your side. I'm wondering if it's from tissue redistributing. I will mention it to my surgeon this week. I was just wondering if anyone else had the same experience. Any new lump tends to make me paranoid - but it did happen right out of surgery, so I'm thinking they must be related. I will also try getting the extra weight off after the holidays.
TeamKim, I just dread buying bigger size jeans. It's a shame they don't make pant expanders like tissue expanders. It would save us all a lot of money. Then we can just shrink them back down to size when we lose the weight. Sorry, I'm rambling here -
SDB -- I have had lumpiness along my incision from my Lumpie -- it comes and goes. Massaging with vitamin E oil or Aquaphor seems to help to smooth it out as it heals. You are still very close to surgery, so scar tissue is bound to be there. By all means ask your surgeon, but I would be surprised if it is anything. My surgery was in July, and I still have some little bitty lumps along the incision! but they are getting smaller with time and massage. -
Met with my RO last week and have my simulation today. Thursday will be 4 weeks from surgery and with the holidays meaning I would have to miss a day here and there he decided to start radiation on January 6 for five weeks. I'm looking forward to it as it means I'll be done with this treatment and can mostly get back to normal! -
aeryno, Congrats on getting the simulation done, and at least having a plan, appt. to get started. I get so frustrated waiting. I do not even have a appt. yet with the RO, hopefully it will be next week.
Oncearunner, I also have a thickening ( or is that fluid ? ) where the incision is from the node removal. I stretch, and am doing some preventative LE exercises. When I met with the RO, 4 1/2 months ago, before chemo, his nurse seemed on top of the what to do for range of motion, preventative stuff. I have never seen a PT, or look at those incisions much. Still battling side effects, bone pain & fatigue.
Interesting reading the weight issues, who lost, who gained. I assume I will put back 10 lbs. pretty quickly. My taste buds are slowly coming back. Still very little appetite. I have jeans in 3 sizes, & yoga pants in 2 sizes. Since I took a medical leave of absence, I am not having to dress in "buisness" type clothes. I work at a school, which the dress is somewhat casual.
Thxs to all...being part of this group makes this process a lot easier.. -
Hi,
I am scheduled for a consult the first week in January at Massachusetts General Hospital (MGH) in Boston for followup to include radiation and hormone therapy. I had my lumpectomy and sentinel node biopsy at MGH on December 3rd. I live in upstate New York and went there because this is my second cancer in three years. In 2011 I was diagnosed with Stage IV laryngeal cancer and went to MGH because the cancer is rare and they treat hundreds there. The treatment was very hard, high dose radiation for 7 weeks (35 treatments) concurrent with chemo, second degree radiation burns on my neck, feeding tube for 4 months, etc. etc. Basically I lost 6 months of my life that year and was very depressed because the recovery went on for months before I had any energy and could eat again. Luckily the treatment worked and I recovered to near full health with only a few residual symptoms.
So it was a kick in the teeth to find out this October that I have another cancer. I guess I shouldn't have complained back then that my cancer wasn't as popular (pink ribbons, etc.) as breast cancer. Luckily the results of the pathology report are as good as it gets if you have to have breast cancer. The surgeon got it all during surgery, it is not too big (1.2 cm), ER+ and the nodes are negative. The radiation oncologist said I am eligible for the 1 or 2 weeks treatment (Partial breast irradiation external) and also the 4 weeks and 6 weeks whole breast radiation course. I want the short partial breast treatment because I already got lots of radiation 2 and a half years ago and i want to go to Boston for the treatment. I would be interested in hearing from others who are getting the short external partial breast radiation.
Overall my mood is so much better than the last time around. Funny how having gone through another cancer and recovered makes me less anxious about this one. Hey maybe they can use the tatoo from the last time around. Every doctor tells me the treatment for breast cancer is so much easier than what I went through before. The odds for recurrence and survival odds are much better for me this time around. So I get through this and hope another cancer doesn't pop up.
My recommendation for healing the incisions is cocoa butter and vitamin E cream. I still use it on my neck every night. I've been using it on my underarm and it keeps the skin soft and helps when I stretch that area.
During my prior radiation treatment I used Aloe straight from the plant (messy but no additives) and Aquaphor which is what they use on burn victims.
I was a frequent visitor on a head and neck cancer board when I was going through treatment. I got a lot of practical advice and think these boards are one of the best examples of how the internet can help people. -
Thanks TeamKim for starting the thread! I'll be meeting with my radiology oncologist on Wednesday. When I met her last she told me it is my decision to get Rad or not. I'm going to do it but am more anxious about it than chemo. I'm really scared it will ruin my implants and make my lymphedema worse. I'll read up on the links from the moderators for more understanding. My friend says from walking into the office, changing clothes, getting Rads, changing again it takes maybe 1/2 hour. Good luck to you all. -
Welcome Lizzy, your first go around with throat cancer sounds horrific. I cannot imagine how difficult a feeding tube would be. Sorry that you are having another health crisis, you did not mention chemo so I am assuming since your nodes were negative you will not have to face that.( that is a good thing cause its not pretty) I was very ill 2 years ago, had to have 1/3 of my colon removed due to diverticulitis. I lost 35 lbs then, gained 15 back, diagnosed last July with breast cancer, lost 20 lbs. This website has been so helpful, I did not find it until I was almost done with chemo, but I have making up for lost time.
Keep posting... -
Hi Everyone,
I had my 1st of 25 Rad treatments today. It was easy but it is mentally a bit overwhelming. I almost got weepy but pulled myself together.
I met with the nurse afterward and she said to use Calendula ointment every night along with regular cornstarch put in my bra everyday to absorb moisture. She said if I start to get red I can use the Calendula twice a day but to wipe it off before my rad session. I was told to use only natural deodorant like Toms of Maine or Crystal.
I am having prone rads (face down) since I am larger breasted so I do not have a mold. The radiation machine had arms like others mentioned that moved around me.
Rosecal - I hope you're doing OK. I get really stressed out at times too. It's is just hard, period. Even if you have a good prognosis. I have good moments and not so good ones with all of this. It is very disruptive to our lives and long term side effects of treatment are concerning!
I don't know about you all, but as much as my husband, family and friends try to be there for me, they do not understand. I am grateful that I have not had to go through grueling chemo or a mastectomy but this is still hard!
Teamkim - Your last Chemo is coming up! How are you? -
hi Holeinone
Sorry for your health challenges. I have a family history of colon cancer and have been getting colonoscopy's since my late 40's. I always thought that would be the cancer I would get.
They are going to do a OncotypeDX test on my tumor to determine the risk of recurrence. If it scores high then they will suggest chemo before radiation. I am hoping for no chemo. I had 5 rounds of chemo the last time around at the same time as the radiation for the laryngeal cancer. I know from experience how sick it makes you. Unless they can tell me it improves my odds significantly (better than 5%), given the small size and negative nodes, I will say no to chemo. -
Dawn, I agree its all hard, sometimes emotionally, & the physical pain is wearing me down. I walk now like I need my hips replaced. I was training for a half marathon ( walking, too old to run ) 6 months ago. Life has thrown us a major bump. Family and friends don't understand because they are not living it. We would be the same, supportive of a friend or relative, but clueless about the distress this causes. That is why it is so important to find support with this website...
Team Kim ...looks like you have your LAST chemo on Thursday..? Is that chemo ? I am not familiar with it.. -
Evening all..... Had my first radiation treatment today - one down and 32 or so to go! I'm not sure if its all in my head or not, but I thought I noticed a little irritation from my bra. I thought my RO had said I could probably wear my prosthesis and mastectomy bra for a little while, but I'm thinking I might not wear it at all during treatment. The radiation nurse gave me some cream to use. On vacation this week and next, though not much of a vacation with rads every day! -
Good evening everyone, Had treatment 4/30 today and I thought I felt a couple of tingling feelings in my chest already on Sat. & Sun. Today after #4 I can definitely feel something burning, not so much in my breast but more toward the middle of my chest. Could this be so? Isn't this a bit early to feel any burning? Is it only anxiety? I also feel a slightly more tired, but I run tired most of the time, although this feels a little more so. I was calming down more Sunday, but when it came time to drive to the hospital for rads treatment, I experienced severe anxiety, chest hurt, digestion problems. I did feel better after the treatment. I was really disappointed how the anxiety came over me and so fast. I was glad too I didn't lose any weight over the weekend. I know some of you have gained weight, wish I could put on a just a few lbs. Kind of scared. -
Welcome Lizzie & mcgis -- our winter group is growing and growing -- lots of friends to be in our pockets for the zip zap! Lizzie, so sorry that you have to revisit the big C -- I can see, after all that you went through, that BC seems much more manageable.
Everyone who is taking the plunge with first rads tx, I hope it gets easier. We are here for you -- feel free to vent, rant, ask any questions, etc.
Dawn & Holeinone -- Thanks for asking about my chemo -- Almost done -- Yay!! I had 3 tx of Cytoxan & Taxotere, but the Taxotere gave me a rash which got worse each time. After tx 3, I had hives over about 40% of my body and it took 5 days of Prednisone to conquer it, so the MO says it is too dangerous for me to have Taxotere again. So for my last tx, he is splitting it up -- Cytoxan alone, which I got last Thurs, and then one infusion of Gemzar to replace the T which is coming up in two days. Gemzar is used for a number of cancers -- most notably pancreatic cancer -- not just BC. Believe me, I lobbied to just be done -- but MO thought that wasn't a good idea. The fatigue hit me BIG wig this Cytoxan infusion -- I spent 15 hrs sleeping yesterday. My rads will start in about 3 weeks after last chemo.
Have a peaceful evening, radiant ones!! -
Things I Wish I Knew Before Beginning Rads
I am currently in the middle of my rads treatments and wanted to list some of my observations, in case those who are starting rads soon or in the winter will not be as clueless.
1) Radiation can involve use of radiation tattoos. Initially, I was told that they would use temporary tattoos made with Sharpie markers. They later told me on the day of the scans that the tattoos would be permanent because permanent tattoos are better and the machine is more precise that way. These permanent tattoos are about as big as a pencil eraser and are made with needles and ink/henna. The needles do burn or sting as they go into your skin.
2) Radiation itself is not bad so far. The machine I am on is in a prone position. You lay on the table and will hear loud buzzing sounds a few seconds apart. There is no pain involved.
3) Today I had the CT scan for the 5 boosts which will be in a few weeks. What I did not know and wanted to share with you is that for the boosts I will be in a different machine where I will be laying on my back. The technician had to do more radiation tattoos with the needle. I was not aware of any of this before today.
4) Radiation can burn your skin. Mine is holding up pretty well so far. Whenever I began radiation, all the workers said that it would feel like a sunburn. I would have to say that this is not accurate. It is very painful at times and my breast is enlarged and swollen. It is more of a sensation of hurting from inside out than being a sunburn. It is more painful that sunburn. Today my doctor wanted to write a prescription that she said is used on burn patients; however, I am allergic to the components of it. So until I see her next week for a checkup, I will be using Aloe Vera Gel and Aquaphor Baby Ointment three times a day, as my doctor recommended. I also have to take Advil for the pain and use an ice pack to the area if the pain is a stinging type of pain. -
thx hobbesla, I have really stuck my head in the sand on the treatment & SE of what radiation will bring. I am still weathering the chemo storm but am quite crabby that I do not even have an appt. yet with the radiologist. I am really hoping I get that appt. scheduled tomorrow. Waiting is not my strong trait. I was really nervous for certain SE of chemo, some happened, some did not. I do have somewhat sensitive skin & the node incision hurts all the time, from doing the exercises for LE, & range of motion.
So are the boosts for the breast or the armpit area for the node incision?
Thanks again for your informative post...happy for you that you are 1/2 way through... -
Lizzie, I'm so sorry you are having to go through this again. You've been through so much already.
Holeinone, I can totally relate with the colon stuff. Ten years ago I had Necrcotizing Fasciitis and had to have a colostomy for about a year. It can be quite traumatic. This whole breast cancer diagnosis has me so nervous about getting NF again. Another reason why I'm so paranoid about radiation. I hold my breath with each treatment and every needle prick (got NF as a result of an injection for a hemorrhoid).
TeamKim, Congratulations on your last chemo. I was so glad to be done with that portion of treatment.
Rose, When i was going through chemo my MO had me take Ativan with each treatment. It really helped with my anxiety. He also prescribed Marinol for nausea and appetite. I didn't have to use the Marinol, but you may want to ask about it if you're trying to gain a few pounds. It's supposed to stimulate your appetite. I'm sending positive thoughts your way as you're going through your 5th treatment today.
Hobbe, Thanks for sharing your experience. It helps to know what to expect.
It's nice to be able to connect with people that are going through the same emotions and treatments. I'm so thankful for you all. -
Hello everyone, I'm joining this thread as I will be starting rads Monday 12/23. I go for my dry run this Thursday. I will be getting 33 treatment includes 5 boosts. My rads will be done in prone position is anyone else? I'm excited to get started and ready to start counting down to the finish line. I will spend some time tonight reading up on the posts on this thread for information so thanks in advance for sharing. I will post my experiences as well. -
Hobbesla -- thanks for sharing your "wish I knew" list -- good to know what to expect. I have heard the "like a sunburn" line too, and wondered how that could be all it was, especially if it is supposed to be treating cells from the inside.
Welcome candi07 -- Let us know how the dry run goes -- (((hugs)))
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Hi everyone...well, I did my simulation yesterday and it was much easier than I thought it would be. The tech was so nice, and my RO is really great. He is very laid back and says don't worry we will address any problems that come up, if there are any. I had 3 tattoos, one in between my breast and one on each side of my rib cage. I have to say they hurt a little (especially the one on the chest) but not that big of deal. The tech made a mold of my upper body then I went into the cat scan machine. It was quick and didn't bother me at all, even with my claustrophobia. The whole process was half an hour and that included getting undressed and dressed again. The dr. said it would go to planning, then they would call me in about two weeks to start radiation. I don't know what is included in the planning stage as he already told me I would have 20 treatments, 3 dimensional.
I really suffer from anxiety and I am so happy that I was able to get through this step without a problem.
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Holeinone - thanks for putting my feelings into words! You said it perfectly. I am sorry you are in pain and hope it gets better soon and that rads are not too bad for you! I agree, this board makes so much difference.
Teamkim - that rash just sounds awful! Hang in there ! You are almost done! I hope you improve very quickly - this all stinks and I feel for you.
Hobbesla - I seem to remember that you and I had our surgeries on the same two days. Thank you for your list but the burning really worries me! I appreciate knowing that it may happen though. My Radiation nurse also described it as a bad sunburn. I just hate lying on that table knowing they are delivering radiation to my breast and wonder how I will be changed forever. Please keep us updated on your progress. I am glad you are half way through.
Candi07- I am having prone rads too. It is a good thing because it helps to keep the radiation away from your heart.
I had treatment #2 today. It was a snowy day today but there was no way I was going to miss a session already! No side effects yet. I wanted to also say that I have two tattoos and they are so very tiny - one is so small that the rads tech has to use a flashlight to find it. Because I had very large margins, I will not be having the boosts.
As always, I am so glad to have you to talk to!
Dawn
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Ginger - We were posting at the same time. Yay!! You did it! I am happy for you! Just keep plugging away and it will all be over!
Dawn
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I glad to hear that everyone's treatments appear to be going well. I find to great to also read all of the different ways we are having our radiation treatments done. My list of questions for the radiation oncologist keeps growing as I read this threat! Don't worry, that's a really good thing for me. I'm one of those people who would plan every single detail of every part of my life if I could. I don't do well with uncertainty!
I finally got my pathology results yesterday after over two weeks of waiting. This means that I can finally meet with the radiation oncologist tomorrow and discuss treatment plans. I'm happy to report that I had a pathologically complete response to chemo!
Hoping that everyone having a treatment today has good driving conditions and an easy time at treatment.
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