support for foregoing radiation?

[norkdo]

Hi.
I just finished all my chemo. I spent a week in hospital with an infection they at first thot was a superbug as i had eight days of diarrhea after the last taxo. i am apparently ok now after antibiotics but food still causes gas, heartburn, etc. no food feels like it is absorbing still.

I feel like hell and worry that chemo has permanently destroyed my gastro system.

I met with the radiation oncologist. I asked what the stats indicated for my future survival/mets possiblity, etc. were I to forego radiation altogether. He pushed it, of course. Said mets would stay away about ten percent more if i went ahead and did the twenty three radiations I am scheduled for.

I do not want to burn my skin and am afraid of radiation errors, etc. and have treatment fatigue right now. I understand that you have to wait a certain number of months after radiation before reconstruction. I am desperate for reconstruction and am scheduled to meet a surgeon next week.

Ideally i would just forego radiation altogether and go for reconstruction. What advice do you have for me? Anyone know what the stats are on survival and metastasis for those having the radiations and those not?

[Jackie07]

The statistics I read back in 2003 was that radiation reduces recurrence rate (after lumpectomy) by almost 10%. I believe that my recurrence was confined to the local/regional area because I'd had radiation treatment in 2004.

There are creams and lotions for reducing the burning on the skin.

Understand you feeling right now - you've suffered enough from chemo and the complications. But reconstruction is something can be done any time. Why take the unnecessary risk by forgoing radiation?

[Being the daughter of a WWII colonel, I tend to follow 'strict rules' even though the personality modeled after my Mother is the complete opposite... ]

[norkdo]

thank you sooooo much for that, jackie.
really appreciate it.

[ElaineM]

I would have the gastro intestinal issues checked out by a health care professional before radiation. Perhaps there is something that will help some of your gastro intestinal issues, so that your body will feel better and you will be able to eat more without discomfort during radiation. You need to be strong for radiation too.
There are various kinds of radiation therapies for breast cancer. Be sure you understand exactly what kind you will be receiving and what the possible side effects are if you decide to go ahead with radiation. Perhaps you will be more comfortable if you get a second radiation opinion before beginning radiation too.
Various creams can be prescribed for skin issues during radiation. Pure Aloe Vera gel is often used for skin issues in Hawaii.

[Ellie F]

Hi
Firstly I am really sorry to hear you have had a c**p time.
As for your stomach issues I remember it took quite a while before my gut felt normal after the taxane even though I didn't get any bugs. I managed it by eating small amounts often and avoiding to much dairy which seemed to make it worse.
One of the differences I have noticed from being part of this board is the number of rads that you get in the States. Here the
normal 'dose' seems to be 15 sessions if you have a mastectomy but an extra 4 booster sessions if you have a lumpectomy.
What type of reconstruction are you considering?

Ellie

[tricia keegan]

It took my tummy time to recover too and I had an endoscopy at one point due to weight loss a year after chemo, thankfully it sorted itself out and I just take a nexium now and don't eat too many fried foods.

I know how you feel about the rads, but you've gone through so much already to treat this aggressively why cut corners now you may regret??? Rads for me was a breeze after chemo and the newer machine's are very accurate, I used 100% natural aloe vera after each tx and only went a little pink and itchy, despite having boosts to my nipple area!!! I'd say go for it, chemo is systemic but there may be still some few stray cells around the surgery site, your decision of course but thats my thinking.

[norkdo]

ty very much. so i am not the only one whose stomach got wrecked by taxotere. they ran cultures to find out what bug was giving me the eight days of diahrea but none of their test cultures grew. they had me on antibiotic drip at the hospital last week. i just filled a cipro antibiotic prescription (thank god all meds except emend are free to all who get cancer in canada) and will start it today as the days since i am out of hosp ..my guts are in hell.

re ellie's comment bout number of rads. good q. my radiologist oncologist said the stats show same effect if you take thirty rads or twenty three cos they are giving you the same amount over thirty, in the states as they get more money from the hmo's for the sheer number of rads given, despite the fact it is the same amount as if twenty three given.

[norkdo]

trish did u say your tummy remained delicate for a year? oh no.

[norkdo]

ellie i dunno yet. would love advice there too. i.e. should i have my non cancerous boob removed as well in order to match?

how many months till i can have reconstruction after rads? anyone know?

is it true that i cannot have a belly fat transplant onto reconstruction (tram flap?) type of reconstruction if i have had a hysterectomy with horizontal scar at top of pubic hair?

thank u, sisters, so much for your help.

[mimi1952]

You need to wait at least one year after radiation to have reconstruction with tissue expanders and implants. Even then, no guarantee. I had 37 rounds of radiation because margin was less than 1mm to chest wall. If not for that, knowing what I know now, I never would have had radiation. The permanent damage that was done caused my lung issues(still dealing with) and having failed expander/implant reconstruction and had to do tram flap. I had hysterectomy scar too and dr. could still do a fabulous job with flap. I opted for bilateral mastecomies and bilateral reconstruction. Glad I did, looks good and can purchase normal bras!!!

[StephN]

Hi Nora -
I can't give advice on recon as I did not need it, but I did take taxanes and had to keep my tum under control.

Taking a stomach acid blocker from the start did help. I drank a lot of herbal teas that are good for your digestion and other innerds. Also, watched the citrus. Could not drink orange juice or eat grapefruit. Small amounts of cran raspberry juice a bit watered down were good for a pick up and hydration.

I ate a lot of bananas, and chicken broth with rice.

I had 30 rads with boost. Burn was not bad for me and I am quite fair skinned. Only the last few days did I get something like a rather bad sunburn, but without blisters.

Good luck.

[Jackie07]

Nora,

Wondered if the LBBC recording might help you make your decision on reconstruction?

New Podcasts on Reconstruction, Lymphedema, Menopausal Symptoms

Many LBBC programs are recorded and posted on our website so you can listen to them when your schedule permits. These recordings from our annual fall conference this past October are now available:

• Breast Reconstruction with Ariel N. Rad, MD, PhD
• Lymphedema with Wilma Morgan-Hazelwood, OTR/L, CLT-LANA
• The Big “M”: Managing Menopausal Symptoms with Beverly Vaughn, MD

Visit the lbbc.org event archive for a list of past programs.



Jaime’s Story: It’s a Celebration




“Usually when you talk about celebrating you think about birthdays, holidays, graduations, weddings, and so on. You think about the dancing, the balloons, the food, and the people you are spending your time with. You think about celebrating things that make you smile.
You don’t think about celebrating your battle with cancer. My husband has been telling me over the past few months he wants to throw me a party to celebrate my accomplishments over the past year. I keep putting him off on the back burner.”
Read the rest of Jaime’s story.

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[Debbie L.]

Nora, I'm sorry to hear you've been so sick. It would take anyone awhile to bounce back from 8+ days of diarrhea -- try to be patient with your body. I don't think many people have longterm GI effects from chemo, so let's hope that this was a nasty bug, and that it's gone. It can be hard to culture out the bugs, especially once you've begun treatment. And then treatment wipes out both good and bad bugs so it can take awhile to recover the beneficial "flora" (bugs) that help your digestive system function. Some recommend yogurt (with active cultures) to help with this. Your GI doc should be up on best ways to heal your gut.

Radiation after mastectomy. There is not a lot of evidence to go on, and what there is, is by definition -- old (based on older techniques of radiation). There are several studies showing a smallish benefit to survival with radiation after mastectomy for breast cancers with >3 positive nodes. And one more recent (but small) study showed an overall survival benefit (30-50%) for those with fewer (1-3) positive nodes.

Radiation is usually thought of as preventing only local/regional recurrences, so a survival advantage at 5 years, as that second study showed -- is hard to explain. The other bit is that a local recurrence after mastectomy carries a considerably worse prognosis than does one after lumpectomy, so logic tells us that survival would be better with radiation that prevented some of those local recurrences -- but still -- it seems that would typically take longer than 5 years to show up.

A few abstracts, without enough detail (but it's PPV to see the whole thing, maybe someone has access?):

http://cs.astro.org/blogs/astronews/...-survival.aspx

http://www.sciencedirect.com/science...53429609000460

As for reconstruction questions, I think that is an area still under investigation, with much variation between surgeons, in their opinions and preferences about the details. I don't think there are any standards that are accepted as gospel by all plastic surgeons. To add to the confusion, each person's tissue heals (from radiation) differently and and at different speeds. Here's one review study that seemed to prefer autologous tissue (flaps vs. implants) after reconstruction, at least in the abstract:

http://journals.lww.com/plasreconsur...tion__A.9.aspx

It seems like your first step is to give yourself time to recover from the GI stuff. Then when you're feeling stronger, you can tackle the decisions about rads and reconstruction. Gather information and recommendations from both your plastic surgeon and your radiation oncologist, keeping in mind that their recommendations may tend to be somewhat biased in favor of what they have to offer (smile). If possible, get a second opinion in both arenas. Ask for numbers -- specific studies (evidence) that support what each provider recommends. Especially for the plastic surgeon, ask how many of the recommended surgeries this person has performed.

I think it's hard to make decisions about two TOTALLY separate issues that are linked to each other. But it might help to keep them separate in your head, if possible. Your radiation decision should be made based upon cancer and survival concerns, first and foremost -- right? And then the reconstruction decision (although the outcome is affected by the radiation decision) is a separate quality-of-life decision.

As they say, in order to have quality-of-life, you first have to have life. So the first question is how much of a difference doing radiation might make to survival. When you have that information in hand, then only you can decide if the benefit, weighed against the downsides, is enough for you, individually.

Good luck, keep us posted. You'll be in my thoughts and prayers.

Debbie Laxague

['lizbeth]

Nora,

I skipped radiation treatment. I have 3/15 nodes and was stage IIb, multiples lesions, high grade, Pagets of the nipple, etc, etc, etc.

I had a mastectomy in January 2008 with immediate TRAM. Complications with the TRAM delayed my chemo 6 months, then did 6 treatments of Taxotere and 52 weekly treatments of Herceptin.

In January 2010 I joined one of the vaccine trials. In June 2010 started prescriptive exercise for cancer survivors. In June 2010 joined the ENERGY study and enrolled into training as a holistic health practitioner. I work to keep my stress levels low.

So I skipped radiation, but tried to incorporate 3 active strategies to keep my immune system strong and healthy.

In 4 days I will be celebrating 4 years since my cancer diagnosis and 3 1/2 years NED. Yeah.

[norkdo]

lots to think abt. deb, reading the studies there, it seems i really should do the radiation at some point, anyway, in case i am not as lucky as lizabeth.

how about radiation on right breast area AFTER reconstruction? is it possible?

[JillaryJill]

Hi Nora,

As you can see from my signature my diagnosis is similar. I was treated at a large teaching hospital in Chicago. My primary onc and my radiation onc said radiation was not an option for me. My onc has been at the forefront of Her2 treatment and was involved in the early clinical trials of Herceptin. She said you need to give yourself the best chance at a cure in the beginning. I had tissue expanders placed during the time of my mastectomy. I had the saline drained to a low level prior to radiation. 3 weeks ago I had the expanders out and my silicone implants placed. My plastic surgeon recommended I wait at least 4 months after radiation for my skin to heal which I did. I have fair skin, freckles with an Irish/German complexion. My cancer side drained much more than my non cancer side, and also has more post surgical swelling but I did not need the tram flap since my skin was in good shape. My plastic surgeon did do some fat transfer from my stomach to round out the edges around the implants. My stomach was very bruised and swollen for 2 weeks. My plastic surgeon explained since I had a mastectomy there was no breast tissue remaining, so the fat transfer is necessary to round things out. He also placed Alloderm at the top of my breast and the bottom. I am happy with the results and the pain was minimal.

[tricia keegan]

Nora, I did'nt have diarrhea all that time lol, but if I ate something fried or greasy I'd feel queasy, the onc became worried when I still had'nt regained the lost weight after a year and so did the endo to rule out anything suspicious.
I was told the anti nausea meds as well as chemo itself can do a number on our tummys during chemo and really I should have asked for Nexium or something similar when I started....hindsight is a wonderful thing!!

[norkdo]

trish and jill:
trish: sounds like i can expect a good year till tummy returns to normal.

Jill: you said "My primary onc and my radiation onc said radiation was not an option for me". but in your signature it says "33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area". ???????? On what grounds did they initially claim radiation was not an option for you? What changed their minds?

We have very similar Stage 3b b.c. so I am delighted you posted here so I can compare. One thing that REALLY discombobulated me and continues to do so is the fact my stupid surgeon told me my cancer was "so far advanced" that he refused my request for a double mastectomy and reconstruction back on june seventh of this year. i was diagnosed may tenth 2011, a month before the surgery. I tried REALLY hard to convince him to take both boobs instead of the one. I was turned down flat using scare techniques on me: "oh you are so advanced that we have to get u into chemo asap and six weeks is enough time for healing for one boob but not for two. you would need months for two boobs to heal.... with two boobs removed in the one surgery infection can result, delaying the chemo...blah blah."
WHAT a load of hogwash. Most of the women on this site get their chemo started way inside that six week "de rigeur" period for healing. most women with the same three b cancer got their surgery sooner than mine, with both boobs off if they wanted, and chemo done simultaneously, finished sooner than mine.
I think he just did not want to stand up in the operating room for five hours instead of two hours. I am still furious about it. why do i have to go get an entirely separate surgery to remove my ridiculous existing boob and install expanders when he could have done it all that day in june? tons of women here have that situation. dammit.

It sounds from what you wrote that it is possible four months after this reconstructive operation, for me to have the saline drained and then do the radiation. that is what i want. i am just so mad that i didnt get what i want back in june and now i have to delay radiation to get what he could have done then.

i appreciate your point that it is best that i do radiation immediately, but i am just sick of this single boob flying around, and the hideousness of my ugly ugly scar on my mastectomy site (the one that wouldn't stay closed during chemo and kept getting fungus growing in it, DESPITE the bull I was fed that "my advanced cancer required only one boob off at a time so it will heal before chemo starts".

what do you think..three months from now the reconstruction, then four months later a saline drain from the right side and a month of radiation? will that be soon enough for the radiation to be effective?

[norkdo]

jill: by ""My primary onc and my radiation onc said radiation was not an option for me", any chance you meant "said radiation-only was not an option for me"...?
did u mean u asked if you could forego chemo and just do radiation, and they nixed that idea?

[JillaryJill]

When I said radiation was not an option...what they meant was you do not have the option of NOT having radiation. I had a tumor in my right breast that invaded my duct and broke through the duct and invaded over 50% of my breast tissue on my right side. I also has 12 positive nodes out of 15. I elected to have my left breast removed. I have dense breast tissue and I don't believe in mammograms for dense breast tissue anymore. I had a clear mammogram 13 months before my diagnosis and that mammogram was clear, however I am 53 years old and had a mammogram every year since I was 40. I went back and looked at all my mammograms and each one had a standard disclaimer on the bottom..."Due to dense breast tissue, certain lesions may not be detected." My tissue expanders were installed at the time of my mastectomy surgery. I had my surgery November 17 and my first chemo December 31, 2010 so the wait was really not that long. My expanders were filled with saline a little at a time to the full stretch they needed to be ( I am a B cup and they were filled to about a C cup, they need to stretch beyond the implant size). Prior to radiation they were drained back down to like less than an A cup size. I ended chemo in April, then started radiation. Ended radiation in July 2011. I only started to burn about round 23 -25, then I had 8 booster doses to the scar only. These were a piece of cake and my skin already started to tan. I found radiation a breeze. My plastic surgeon checked my skin at 3 months post radiation and then told me to wait another month and he would do the surgery but the reason we went with 4 months is my daughter was married October 22 and he did not want to risk surgery so close to her wedding in case there was a complication. He did tell me however if he went in and found the deep layers of the skin were too damaged, he would have to do the trans flap which would be overnight in the hospital, more incisions etc.

Somehow you need to have your plastic surgeon and your radiation onc talk and work out a plan for you. They need to work together. My radiation onc and my plastic surgeon communicated by email, and my primary onc was the quarterback and told them, I want my patient's life to be saved and we are interested in a good cosmetic result. The lowest cut shirt I wear is a V-neck so it was not a vanity thing. I did not want a constant reminder of the amputation of my breast/breasts due to breast cancer. Even though I don't have nipples (not ready for another surgery) I do like that I don't have to use prostestic, special bras etc. I want my life going forward to be as normal as possible.

In my opinion from everything I learned, from my docs, if you want to know who my onc's are they are actually quite famous and alot of info about them on the internet you can contact me directly and I will share that info. My primary onc said, we are going to throw the book at you, Stage IIIc is still considered early detection. The lymph involvement is not as significant as it once was, since A. You removed the cancer via surgery and B. we will radiate the underarm and lymph area since I had some lymph nodes that had areas of extra capular spread C. We have a targeted therapy, that will seek out and destroy the residual cancer cells. But she was very insistant on mastectomy, chemo/ Herceptin and radiation.