MIDDLE-AGED WOMEN 40-60ish
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Lynneia - so sorry about your diagnosis but take the time you need to get through all your appointments. It was a month and 1/2 between my diagnosis and surgery.
About the node study, in my case I too had the dye put in two hours before surgery. Knew up front we would BiMX, did the SNB first and the first node showed signifigant changes and was diagnosed cancer, surgeon took 9 more and 4 were cancer. I wished at that time they would have halted the reconstruction since I would need both chemo and radiation but I was under so had no say. Have had nothing but problems with recon since. Got of track, in the study they only talked about lumpectomy's right? I did not see any thing about mastectomy's so not for sure if it was applied to that. I wonder if it is judgment of the BS at the time how many to take?
About boost, my RO told me my boost would only where my mx scar was since it is concaved and the regular treatment did not reach it. They used the same plastic shield they used for my bolus treatments where they radiate the skin area only not the whole breast. So is boost treatments different with each type of surgery?
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I had six or seven boosts at the end of my radiation. It was supposedly for where the surgery site scarring was and also to get the surface skin (since my tumor was very close to the surface.) NativeMainer seems to be knowledgeable about the boosts...Do women get them for different reasons? It does seem like they mainly give 5 or 7 boosts. Why do some women NOT get them? What exactly is the bolus, also? NM?0
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Interestingly, to me the boosts make MORE sense than the whole breast radiation. My cancer was way up high, MRI and mammography indicated nothing else in there, so WHY would my entire breast need to be zapped? I can totally see doing concentrated zaps to the area where cancer developed in the first place. Especially in my type of situation, where the tumor was in an area that was otherwise pretty much chest muscle and skin. Not much tissue to take, no chance to get big margins, and obviously a possibility that a small, microscopic bit of horror could have been left behind, even if I'd "gone big" and gotten a mastectomy instead. So to my mind, with my situation, radiating the bottom of that breast seemed goofy. Why not radiate the OTHER one, just in case? Actually, I suppose a good part of that other breast DID get zapped with radiation, now that I think about it. I wasn't a candidate for the more concentrated radiation techniques, because of the aforementioned location of my tumor.
Also - I had a situation where the technicians were trying to align the boosts with my incision scar, which is actually several inches below the area where the tumor actually was. They were insistent that this was the place to target, but I was insistent that I get a chance to confirm that with the radiation oncologist. Turns out I was RIGHT, and they re-drew the correct target area.
I do hope we continue to see more movement toward "less is more" with treatments, so it's nice to see the change to more SNB vs AND.
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I didn't get any boost in radiation, but they did use the bolus on me, EVERYTIME. My RO told me it was to keep the radiation to the top of the skin. I had a dmx (right side cancer). So at the beginning of every treatment they put the bolus on. They didn't want the radiation to go into my chest wall & rib cage.
This was while they were shooting from the front. When they would go around to the back side they would take it off. The bolus also caused me to have 3rd degree burns since it did keep it to the top. At the end, the RO said we could wait a week before we continued, but I only had @ 3-4 treatments left. I told her to just do it so I could get on with healing.
We finished and I had @ a week of healing with sylvadine(sp) cream. Didn't miss any work for this except the week I was healing. Had to sit around the house with no top on for a week. I have had a sore spot on my back, where the radiation was, ever since, and if I bump it or hit it in any way it hurts. Kind of like someone is shoving a knife into my back. They also radiated my neck. The skin there is always itchy and dry no matter how much lotion I put on it. I have a spot right between my itty bitty titties that itches too. It's also dry and thick.
I just found this on ibchelp.org it explaines it very well.Hope you all don't mind me putting it on here it's kind of long. Sorry in advance if it annoyes you.
Radiation for Inflammatory Breast Cancer Patients:
Radiation therapy (or radiotherapy) uses high-energy rays to stop cancer cells from growing and dividing. Radiation therapy is often used for IBC patients to destroy any remaining breast cancer cells in the breast, chest wall, or axilla (underarm) area after surgery. Occasionally, radiation therapy is used before surgery to shrink the size of a tumor. Radiation treatment may also be used to provide temporary relief of symptoms, or to treat malignancies (cancers) that cannot be removed with surgery.
External Beam Radiation
The most common type of radiation therapy used on women with IBC is called external beam radiation. External beam radiation is delivered from a source outside the body on the specific area of the body that has been affected by the cancer. IBC patients usually receive it in the axillary (underarm) area as well as the affected breast area. They may also receive it in the supraclavicular (above the collarbone) area.
Procedure
Before radiation therapy begins, the physician will measure the correct angles for aiming the radiation beam at the specific area of the body and make ink marks on the patient's skin. Sometimes discreet tattoos the size of pinheads are placed on the chest to ensure the exact positioning and accuracy of the treatment. As part of treatment after breast surgery, patients are typically treated with radiation five times per week for at least six to seven weeks in an outpatient clinical setting.
High energy x-rays are skin sparing. Because IBC requires a need for skin irradiation because of skin involvement by the cancer cells, the addition of tissue-equivalent bolus material placed over the radiation field can circumvent skin sparing. Bolus, a flabby, rubbery material, is used to 'fool' the radiation beam so it will deposit the maximum dose on the skin surface instead of a fraction of an inch deeper, as it would otherwise. Therefore, a skin reaction is almost inevitable in this scenario. Bolus is usually incorporated into radiation therapy when a surgical scar, such as a mastectomy scar, needs to receive a full dose of radiation therapy.
Each treatment generally lasts a few minutes; the entire radiation session after machine set-up typically lasts 15 to 30 minutes. The procedure itself is pain-free. The IBC patient will lay on her back on the treatment table with the affected arm raised above her head. Patients are asked to remain still during the procedure. While the radiation is being administered, the technologist will leave the room and monitor the patient on a closed-circuit television. However, patients should be able to communicate with the technologist at any time over an intercom system.Side Effects
Side effects of external beam therapy vary among IBC patients. These possible side effects depend on the dose and schedule of the radiation and the previous chemotheapy that the patient has received. Some patients require an antibiotic or steroidal cream or ointment. Some also need pain medication until a burn heals.
Patients who have received chemotherapy shortly before or during radiation therapy are more susceptible to a skin reaction, and the higher the dose of radiation therapy, the greater the risk of a skin reaction.
The side-effects include:* Fatigue and malaise
* Erythema (reddened skin)
* Edema (swelling)
* Desquamation (The sloughing-off of the outer layer of skin)
* Hyperpigmentation (Increased skin pigmentation)
* Pruritus (Skin itching)
* Skin pain
* Atrophy
* Increased susceptibility to infection
* Neutropenia (reduction in white blood cells)Lymphedema:
Radiation therapy of the axillary (underarm) lymph nodes may cause lymphedema (chronic swelling of the arm) in some IBC patients. Patients who have radiation to the lymph nodes will usually be instructed on arm exercises and other activities to help prevent lymphedema.
Care for the Side Effects:
The following recommendations may help reduce pain from skin reactions to radiation therapy:
* Avoid any additional sun exposure to the area
* Wear loose-fitting clothing, preferably cotton or other material that 'breathes'
* Use warm or tepid water when bathing, rather than hot water
* Avoid constricting bras (if a bra must be worn at all)
* Use cool compresses (not cold or ice packs, as that may cause additional skin damage)
* Lotions or powders on the treated area are generally not recommended
* Specific creams should be approved by the radiation oncologist. Often, there should not be any substance on the skin that could affect the radiation treatment or lead to a more serious burn injury (such as oil).
* Patients should talk to their physicians about soothing oils or creams that may be allowed between (not during) treatment sessions.Hope this helps to answer some questions.
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So I had 5 boosts; because I was getting so fried the techs gave me 2 of my boosts early-I still had 2 or 3 regular burning sessions on tap, but they were giving my skin a break by just doing the 2 boosts, then finished the regular ones I had left & my last 3 days were the last 3 boosts. My tumor was approx 9 o'clock and mid tissue; my scar surrounds that side of my areola-the boosts were directed at 9 oclock area.
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My tumour sat on my chest wall at the bottom of my left breast alone the wire-line at 6 o'clock. I knew better than to try radiation as it would have surely affected my heart and lung. I chose mastectomy instead. Reading all these horror stores validates my decision. My heart alrady has issues and I'm pretty sure radiation would have finished me off!
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I had radiation after chemo and was surprised how well my skin held up. I am very fair skinned, a red head, and was fearing the worst, but did not have any problems. Of course none of us know if there will be se's further down the road. But with all my node involvement and TN status I am glad to have had radiation in my tx package.
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leisa - thanks for your post. Very interesting and informative - I like to know how to take care of my skin and how to prevent problems in the future.
My RO told me the boosts (I had 5) were focused on the area surrounding the tumor, because he said IF the cancer recurs, 80% recur in the same area as the original tumor.
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heartnsoul - What kind of problems are you asking about?
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elimar - Love the box of chocolates at the top of the thread.
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Hey jo - actually, I have no problems, fortunately. I saw my wonderful RO on Wednesday, and I'm supposed to go back in 6 months, but I still thought this was informative for anyone who may be having problems or even to prevent a potential problem. Lots of good information there.
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leisaparis, then all my boost did use the bolus too, but they never once used the word bolus for it. They just said something like, "We're putting this pad on you to keep the radiation near teh surface." In a way, the boosts were easy...although the oval that got hit by rads turned bright pink, the larger rectangle area started to get less sore and inflamed even while I was finishing up with the boosts. I peeled a tiny bit in my boost area, one thin layer like a sunburn.0
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Ooooo Eli, are you asking me? Yes, of course I'll be your valentine if you'll be mine?....lol Great pic Eli.
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Eph--mine was sort of like yours. When I had 5 regular tx left they did the 5 boosts to give my skin near the clavicle a break and then finished those 5 regualr tx after the boosts. That really helped a lot! The bolus was used on me every other tx, but not during the boosts. The boosts were jsut for the scar area. I had a left mx, but still needed rads due to 3 nodes. My skin peeled, but never blistered or got real sore. I used Aloe and then Aquaphor when it got bad.
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chrissyb, you will have to ask me in a more chocolatey way!
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Good evening A little emotional today told my family they have been very supportive. I know I have all your support to. I am glad I have found this website I will have many questions along the way.
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Is this chocolatey enough?
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chrissyb, more than enough...Now you just know that's gonna leave a ring!0
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Damn Eli........I didn't think of that! Guess I'll just have to get the ol' tongue in shape to clean it up.....lol.
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JAYS...I'm doing the post as I go routine ... WOOO HOOO for good results ... that truly made my day hon.0
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Okay, I'm doing my "read and post" thing, as I frequently do. Shaz - I was on tamox for 3 yrs and hten switched to aromasin for 2 yrs ... changes in gyn are normal, but need to be watched closely. I had a pelvic ultrasound and a d&c while on tamox because of changes. As long as you go to gyn every 6 mos and have needed tests, you should be okay, but it's very very important that your gyn knows you're on tamox. good luck hon
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Okay now for some other opinions!
Rads - I had boosts and was told it was for the "target" where the tumor was, same as (sorry, someone, Barb?) said.
The new study - I wish like hell that was known when I had my tx. I had one sentinel light up and they took my axillaries - I later developed LE (lymphedema for newbies) but no axillaries were positive. From all I have read on that new study, and I think I read it all, there was no reason to take my other nodes, meaning I would not have developed LE, which is not the highlight of my life to put it mildly. I am trying to put a good spin on it - that others won't go through what I am and will always go through, and that truly makes me happy for them. For me, not so much...sorry, I get pissy about the LE now and then. On the up side, I liked the part of the study where htey said that early BC with only "mild" positive nodes were over 80% free of cancer or likely recurrence AFTER 5 yrs. Music to my ears
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Why don't they do the rads "boosts" first? Kill the active cells, then move out to kill any stray cells. I've read that the cells double every 180 days, so doesn't it make more sense to hit the hardest at the active site? Hey, I'm just saying....
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Barbe - I agree with you. It would make more sense to hit the target area first then move to the other areas. When I think about it - it seems the ROs do it bass ackwards.
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Dear lynneia.. you have landed in the hand of most supportive group. Dont, worry.. you just follow the treatment plan your doctor has set for you very carefully. Nowadays breastcancer is nothing but just like a normal desease. You can fight it positively with strong will power provided yourself not to breakdown. There are thousands of supporters in our group ... I am sure you will get all the replies .. at the right time. Dont hesitate.. to ask questions on your problem. Before I joined this group, you know I was always confused to think about future prognosis but now i got clear myself and very happy to go through every posts ,which has given me a new life and now I dont care for anything.
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I like what raj said, but want to add, that you will probably have a melt-down or two. Don't knock yourself up over it. Let it happen and let the anger and sorrow OUT!!!
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Lynn- we all are here to support you anyway we can...
Shaz...anything we can do we will...we all care
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lynnia,
We are here for you. it has been wonderful to have trhis group of strong women as a support group. they know where you are, they have been there and i love that they are at all stages of the journey. I agree that you have to keep as positive as possible and know you can beat this, but you will need to run through lots of emotions and you have to allow that as well. I too found telling my family hard especially my sisters, since i was not only telling them about me but bumping their risk as well. they (and my brother and mom have all been wonderful and adding to the support of DH & DS's.
on the node study it did only apply to lumpectomy with radiation.
3 jays- so happy for you!.
thanks for all the rad info. i have some time before the chemo phase is complete..sound like I need to reread the rad information.
on another note I thought Chemo stopped your period? is this a gradual thing? For some reason my body decided it would be fun to start that up again after 6 months...cramps the works....i was hoping a one time occurrence but its back again barely 3 weeks later....now I know why my back hurt last night....oh well it will make me stronger!
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Lyniea- I told my siblings in an email same as I told the 25 teachers I work with...started it off gently with "I have something to tell you..breathe first..."....it is scary for them for sure...makes their mortality a little closer to home for sure. So..buy a box of kleenex (I recommend 3ply! no handlotion int he kleenex though!) and let it out...this is scary stuff and deserves some howling, sobing, hysterical laughing and calm reflecting. You will certainly do it all...from wanting to talk about it to not ever wanting to talk about it again....we are here should and when you need us.
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How do I do a search within a forum? I stumbled on it once but don't recall how.
Anyone? Thank you.
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