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Radiation for IBC

blue22
blue22 Member Posts: 172

I am getting ready to start radiation soon, and was wondering if anyone who also had IBC would share their experience with radiation. My understanding after my RO consult is that the treatment is not the same as for typical breast cancer.

Comments

  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019

    Blue I did rads for an IBC recurrence (I didn't do rads when diagnosed, they wanted to save it for when I became chemo resistant). They often do a much higher dose for IBC than they would for regular BC, and I think that may be the difference they were talking about. I did daily rads for 10 weeks, a total of 68 gray. No boosts. The standard dose is 40-50 gray. Mine was initially resistant, so they used a bolus to concentrate the radiation on my skin for quite a while until it finally started responding.

    Also, it was done over a very large area because my IBC was still spreading - part of my left breast all the way over to a section of my back, and from neck (supraclavicular) down to about 3 inches below my breast.

  • Leslie2010
    Leslie2010 Member Posts: 29
    edited September 2019
    blue22: I had total of 550 cGy, 22 cGy x 25 times, with bolous( to get the skin) from mid neck down to affected breast. I was told NOT to have anything loads with vitamin C, A & E which would counter the treatment. As I was taking Xeloda to sensitize the skin, the RO advised me to refrigerate the bolous and use it to cool the radiated area in the afternoon, dutifully slather the cream 3 times a day and drink a lot of water. Hopefully, your radiation treatment has started and a good theme song was picked. I picked Radioactive as my theme song, they would play that song first, I liked that song but it was hard to stay still with that strong beat. Did your RO explain which part of your radiation plan would be different? Not to scare you, the burn was pretty bad for me towards the end and the throat was constantly dry. Hopefully, your experience will not be too bad.
  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019

    It's weird how radiation affects each of us so differently. I am about as fair-skinned as you can get and I hardly burned at all. I was so worried about it because my skin mets looked like they were about to break through the surface, and they used the bolus for 8 of my sessions and that concentrates it even more on the skin. I was terrified because I'd read of others getting oozing wounds from rads (I already dealt with that once when the mets fungated two years ago) but I barely turned pink. I did get a wicked sore throat though.

    Oh yeah, and turns out I'm allergic to calendula, which is the primary ingredient in two of the creams my RO recommended, so after a few days I broke out in a horrible bumpy rash! I try to forget that part. Took about ten days to figure out what was causing it and I switched to using only straight aloe, had to use a steroid cream to clear up the rash. After that my skin had no problem. Even now, I don't even have a tan line like others get.

  • Leslie2010
    Leslie2010 Member Posts: 29
    edited September 2019
    LoriCA: allergic to the cream RO recommended, wow, that must have been long 10 days. You are such a warrior!
    My skin doesn’t burn easily, with Xeloda plus bolus, it got pretty bad, and the tan line got darker as years go by. The scary part was after all that zapping, the cancer center still found some cancer cells around margin which the local pathologist didn’t see.
  • sbelizabeth
    sbelizabeth Member Posts: 955
    edited September 2019

    My skin is pretty glorious in the sun--I tan like a carefully toasted marshmallow, and in my (MUCH) younger days I "laid out" and fried my skin with baby oil until I looked like the beach babes in Seventeen magazine. I was cruising right along with my rads, thinking this is no big deal, until they added Xeloda. I got an enormous oozing "radiation dermatitis" (they don't call it a burn) that took months to heal. And danged if the whole radiation rodeo didn't give me a frozen shoulder.

    All that being said, I'm sure my rads treatments went a long way to helping prevent a recurrence.

  • MissJane78
    MissJane78 Member Posts: 6
    edited September 2019

    Hi, I am just at the end of my radiation. 50Gy over 25 days, super clavicle lymph nodes & with bolus every day over left side of chest. Where I am in Australia, The bolus is used for all breast cancer patients who have had a mastectomy regardless of diagnosis. It takes about 15mins for the treatment and add15 beforehand for waiting. Put a sorbelene cream in your bag to rub on often. I am a bit tired, and my skin has gone very dark but not at all uncomfortable or painful. Goodluc

  • moderators
    moderators Posts: 7,694
    edited September 2019

    MissJane78, we're so glad you've found our Community and decided to post sharing helpful tips, welcome! We sincerely hope that BC.org will be a source of great support to you. Please continue to let us know how you're doing!

    Best wishes,

    From the Mods

  • blue22
    blue22 Member Posts: 172
    edited September 2019

    Thank you everyone for your responses. The RO talked about the effects upon the skin, that normally they would try to protect the skin but in the case of IBC they want to target the skin as well. I am just trying to figure out how much it will affect daily function. It sounded like near the end I might be feeling pretty terrible.


  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019

    Blue it's the fatigue that is the worse, as long as you don't have problems like sbelizabeth, or an allergic reaction like me haha. By the end of treatment the fatigue can be crushing. My MO told me it could take up to a year for me to recover from it (I had just done another round of chemo right before rads too, plus the higher than usual dose of radiation) if didn't keep trying to push through it, but I barely had the energy to drag my sorry butt into the shower and drive to the hospital. They will monitor your blood counts because rads can affect that too. My lab work stayed rock steady, but it still took me a couple months to recover from the fatigue.

    You might need to change how you dress if you are working or going out a lot. Since I "was" self employed I just didn't wear a bra around the house during rads so there was nothing irritating my skin, but some women find it more comfortable to wear a tank underneath their bra. And if you are going out a lot and want to wear a bra, make sure you have comfortable ones - no underwires, no skinny straps that dig into your shoulders, sports bras seem to be best. I switched to Coobie bras after so many women here recommended them, and they are very comfortable. And most models have a pocket for a prosthetic if needed.

    Leslie when that rash started, the more it hurt and itch, the more cream I would put on, and the worse the rash got, so I would put on more cream hahaha!!. Took me a while to realize that the rash kept worse every time I put on more cream! I switched to miaderm, and guess what? The main ingredient in miaderm is also calendula! I thought it was just a reaction to rads, and this was on top of active skin mets. After a week I was telling my husband that I didn't think I could finish, I was in tears because it was so bad, I don't know how I got the idea to google "calendula allergy", but glad I figured it out because even my RO had never heard of someone being allergic to calendula but apparently it's not uncommon. Anyone who has ragweed allergies will likely by allergic to calendula, and most ROs in the US recommend creams that contain it.

  • MissJane78
    MissJane78 Member Posts: 6
    edited September 2019

    I agree about the fatigue LoriCA. My doctor gave me Duromine to help perk me up. I take 1 on Sundays and it gives me an energy boost for about 3 days. Also Melatonin tablets are amazing, though We need a script for those in Australia.

    I am so glad I found this group, as far as I know there are less than 3000 people in Australia currently with IBC and only myself and 1 other in my little city.

  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019

    We're glad you found us MissJane, there aren't many of us anywhere and I don't know a single person with IBC. Our little group here really means a lot to me.

    I'm HER2+ and on Herceptin, which is cardiotoxic, so any drugs/supplements like Duromine that can affect heart rate and blood pressure are out for me. My MO told me to tough it out and push through it haha! He knows I hate taking any meds that I don't absolutely need, I'm on enough as it is, so he always suggests natural alternatives to try when possible. Definitely agree with the melatonin, I've been using it (with my onco's okay) to help regulate my sleep pattern because I didn't want to take meds to help me sleep. I'm surprised at how well the melatonin works.

  • blue22
    blue22 Member Posts: 172
    edited September 2019

    Welcome MissJane!

    I also don't know anyone with IBC personally. I don't live in a small town, so I am sure there are others around. The only breast cancer group run by my cancer center is stage IV only, so no chance for me to easily get to know other breast cancer patients at my cancer center. I haven't spent much time yet trying to find other groups in the community. It would be nice to be able to get to know other breast cancer patients and survivors, but even more meaningful to get to know other IBC patients. I haven't found much as far as groups online other than this one. I have seen mention of a facebook group, but I don't belong to facebook. I thought I might join just for that reason.


  • blue22
    blue22 Member Posts: 172
    edited September 2019

    How long did everyone wait after surgery for radiation? It has been over a month and a half and I still don't have my planning session. I am getting very frustrated. I am not at a small cancer center, it is a large university and they have a breast care clinic - so no reason for them to take so long. I was initially told that the wait was for the skin to heal, but this is dragging on.

  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019

    I joined that FB group for IBC, not sure if it's the same one, but for the few months I lurked there it was mainly just undiagnosed women who wanted to know if their symptoms sounded like IBC. Most of the people in the group did not even have breast cancer, let alone IBC, so I quickly lost interest. Even though there's only a few of us here, I think the people are more knowledgeable - for example TravelText, he's been to a lot of formal advocate training so he has a strong background in this stuff and knows what he's talking about.

    Sorry I can't help with your other question since I didn't have surgery. The IBC Network has a good treatment FAQ page that might help - https://www.theibcnetwork.org/faqs-ibc-app/#Treatment4

  • Leslie2010
    Leslie2010 Member Posts: 29
    edited September 2019
    Blue22: I will suggest that you be the squeaky wheel, contact your RO, tell the office it’s IBC, usually they will put priority on your appointments.
    I was lucky to ‘meet’ another IBC patient living close by online, we became fast friends. She was being treated in a large university/hospital, I was going to a small clinic, we compared notes often. Actually, as she was a couple weeks ahead of me in treatment, she really helped me a lot. Her mom even came to take care of me after surgery;-). IBC is rare, so this chance meeting is really something.
  • missmom79
    missmom79 Member Posts: 90
    edited September 2019

    blue, I just joined inflammatory breast cancer support group (IBC) and then in small letters it says the IBC network. I was amazed at how many woman are thriving with IBC in this group. Aldo there is a specialist from MD Anderson that helps with the clinical trials there and can answer any questions. Very nice group on fb

  • missmom79
    missmom79 Member Posts: 90
    edited September 2019

    image

  • MissJane78
    MissJane78 Member Posts: 6
    edited September 2019

    Hi Blue22,

    I had my surgery on June 20th, planning on August 05th & radiation started August 20th. So, about 8 weeks apart.

    The waiting game is definitely the hardest.

    I usually just call my Breast Care Nurse to chase my concerns too. She is good at telling me to be patient.

  • blue22
    blue22 Member Posts: 172
    edited September 2019

    Thanks MissJane! Hopefully I won't have to wait too much longer.

  • blue22
    blue22 Member Posts: 172
    edited September 2019

    Thanks Missmom - how are you doing? Did they officially diagnose IBC? I know there was some question about the actual diagnosis.

  • missmom79
    missmom79 Member Posts: 90
    edited September 2019

    it’s funny you ask. I just met with oncologist today and he examined me and said I do have IBC. Also my pet scan was clear. Thank god cuz I was so worried. So I’m at stage 3b. Do they consider it 3b because of the skin Mets? If there was no skin Mets would it be stage 2? I’m confused about that. He also said pet scan was good but it did show the skin affected on that breast. I have to have an echocardiogram before adriamycin + cytoxan 4 cycles followed by weekly taxol along with Herceptin and pertuzumab. I’m doing ok but worried about chemo now. I was worried about petscan and now that I’m over that hurdle I’m worried bout chemo ughh

  • blue22
    blue22 Member Posts: 172
    edited September 2019

    Missmom I am sorry that you actually have IBC. I was hoping that it would turn out that you don't The PET scan is really good news!

    IBC is always stage III or IV. If it wasn't already in the skin, it wouldn't be IBC, and because it is in the skin, it is at least stage III. I take it that you had no lymph node involvement that they detected? That is good! I already had enlarged lymph nodes when I went to the Dr., and they could detect them on the PET scan.

    The short term side effects of chemo are not fun, but honestly I find the mental part of cancer the worst. Chemo brain sucks. Drs. thinking they know what is best for you and treating you like a child sucks. Knowing your life is cut short and it can come back at any time sucks. I saw your anger post - and I COMPLETELY understand how you feel.

    Right now just celebrate the good PET scan results! And if you get chemo brain - you will forget how bad chemo was! I already started forgetting some of the side effects and only remembered them after asking my husband or reading my notes!

  • missmom79
    missmom79 Member Posts: 90
    edited September 2019

    thank you and I have seen many woman doing well with IBC on that group I showed you. One is 11 years out, 6 years out, 8 years out. I’m not sure if my life will be cut short. I could die from something else like getting hit by a damn bus lmfao....

  • missmom79
    missmom79 Member Posts: 90
    edited September 2019

    oh and an older women in her 60’s diagnosed back in 1989 with IBC believe it or not. I still should go for a second opinion though. The oncologist told me the symptoms can wax and wane (come and go) he said that can happen. Because your lymph may be trying to clear it up and then goes away for a bit. Oh and also yes they seen lyphm node involvement but he said not a lot but I was not surprised by that considering that I knew it was already a minute amount in my axillary node 3 weeks ago or less. I was freaking thinking it was spread somewhere cuz it’s been since July 25th since I noticed the symtoms.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited September 2019

    Just popping in here to say, crap, Missmom, I too was really hoping that the MO would say "nope, definitely not IBC" and you could head off to the Stage II forum.

    Very glad however that the PET results are good and that you have had the time to research and know that many people with IBC are successfully treated.

    Wishing you the easiest possible time with your upcoming chemo and other treatments!


  • missmom79
    missmom79 Member Posts: 90
    edited September 2019

    thank you beesie

  • lw422
    lw422 Member Posts: 1,375
    edited July 2021

    Bumping this older thread to ask a few questions about radiation treatment for IBC. I've been studying the MD Anderson Standard of Care after reading a few posts about IBC patients having their "neck" radiated. On the MDA document, it states radiation of "supraclavicular and infraclavicular" lymph nodes as well as the internal mammary and axillary lymph nodes are part of the radiation treatment. From diagrams, it seems the supraclavicular nodes are just above the collar bone (clavicle)... is that as high as the radiation goes? Or does the radiologist map the lymph nodes before treatment and that decides how high the radiation is applied? Here's a diagram of the node location...

    image

    A poster on the IBC Network Forum stated that she has a tongue cancer that was caused by radiation for her IBC. Though I'm sure this isn't common, it's just one more thing to for me obsess about. :hrmm:

    If you've had radiation treatment for IBC, how high did they go on your neck? Have you had any lasting SEs in your mouth/throat/neck?

  • sbelizabeth
    sbelizabeth Member Posts: 955
    edited July 2021

    LW422, my rads treatments went up into my neck. I don't know exactly how far up, but my rad onc was crazy aggressive about stomping out any smoldering cancer cells, and he wanted to get any that had wandered up the lymph nodes in the neck. I think he designed the treatment so the radiation wasn't as intense as it was on the chest, but to this day I have faint odd patterns on the skin of my neck and lower jaw. No one can see them, really, besides me.

    No tongue cancer! No lasting SEs (except the faint skin pattern). I did have some mild radiation burns on my neck toward the end of treatment but they were the least of my skin issues.

  • lw422
    lw422 Member Posts: 1,375
    edited July 2021

    Thanks, SBE. That just scares me, and I'm so freakin' TIRED of being scared. I don't want my neck radiated. :wondering:

    I remember reading Valstim52's posts about her stroke... she said, "My stroke was a blood clot stroke as well. They say my carotid artery was damaged by the rads to my neck area and caused a clot."


  • lw422
    lw422 Member Posts: 1,375
    edited October 2021

    Just thought I'd update the IBC radiation thread. I started rads on October 4 so tomorrow I'll have 2 weeks done. So far, so good. My dose is 50Gy over most of the area and under arm, and a relatively small area mid chest will get 55Gy. The RO ordered a Mepilex patch to go over the 55Gy area so hopefully that will help my skin hold up.