to radiate or not...

indahood

Hi All, I have just joined and am happy to be able to participate in this online community. Right now, I don't have much wisdom to share but hopefully I can contribute in that way as time goes by. At the moment, I am looking for mostly unbiased balanced opinions and experiences from women who decided to forgo any recommended therapies. I have had a lumpectomy last week and received my path report yesterday. Very happy to say it's a great report with an excellent prognosis. Grade 2, Stage 1, excellent 4cm margins, no lymph node involvement. With that in mind, still the surgeon recommends having radiation and hormone therapy. I've always been a very healthy person with an excellent immune system (runs in the family) and I worry about messing with my overall good health in order to give me better survival percentages. I'm wondering about forgoing either radiation or hormone therapy or both and making radical lifestyle changes. I haven't yet met my oncologist but would like to discuss experiences here before that meeting. If you feel you can give me sound advice or share an experience, I would greatly appreciate the support from any woman walking ahead of me on this path. with love, courage and strength to all,

Laurie

gb2115

You said you're looking for opinions from women who decided to forgo therapy. So maybe my opinion isn't one you want, I don't know. I did the recommended therapy, but just wanted to say that the surgeon recommended radiation and hormone therapy to you because it's standard of care after a lumpectomy. With a mastectomy the radiation isn't a given, but is more dependent on the situation (i.e, location of tumor, node status). The purpose of radiation after lumpectomy is to try to eliminate any remaining cancer cells that may have escaped the area (like the needle track from the biopsy). They also focus radiation on the scar area because that's where most recurrences tend to pop up. So recommending radiation is not dependent on positive nodes, or on the surgical margins. It's just their standard of care. Same with hormone therapy for ER/PR positive cancers. The medication targets receptors throughout the body to snuff out any tumor cells that may have escaped to distant sites, keeping in mind that they can sneak by lymph nodes (undetected) and also travel through the lymph nodes in the chest that they don't really biopsy.

Anyway, just giving you more information. This is how my oncologist explained everything to me! All of that said, it's completely your decision what treatment you do or don't want. I had a positive node which got me radiation to extra areas (I was glad they did this rather than go in and take them all out), but my tumor was small with good margins.

Glad to hear you had a good pathology report---get some rest and keep healing up for surgery!! I'm sure your oncology visit will be helpful. Has anyone discussed doing an Oncotype or a Mammaprint to determine need to chemo? I think most oncologists end up doing that if you have hormone positive receptors. My surgeon ordered mine ahead of time so that it would be ready by the time the oncologist saw me. It got me out of chemo, so this was a good thing for me.

chronicpain

You are stage I but Grade 2 and you look pretty young on your picture, if it is recent. You are not describing any specific relative contraindications to XRT. Docs skip XRT in early stage ladies over 70 and in 60-70 the trend is to consider it ok not to do it, but no one has said it is ok to skip it in younger women, especially without hormonal rx.

Talk to your MOC and RO in detail, including about a five-day twice a day option. Read about possible XRT side effects, including on the threads on this forum, there is one for each month, ladies chronicle their day to day.

I am opting against any radiation for my 9 mm Stage I grade I lesion because I am 63 and have a lot of autoimmune problems and chronic pain and a borderline heart, all increase potential for trouble ( plus I am pretty sure I could not keep my arms over my head in a fixed position for a half hour). Stats for survival in my case with and without XRT are also the same, statistically, recurrence risk at five years is around 4% instead of 1.5%.

If I were younger and grade 2 like you, I would probably try to do it to assure longer life

indahood

Thanks GB, that was an excellent answer, just the kind of insight I am looking for. I should amend my post so it reads to anyone who has advice or more experience period since I am not convinced either way at this point. I am leaning towards traditional therapy route but wanted to look around here first. I have a friend who is adamant I not do all that treatment since she did and has since joined the group of people who put their faith more in homeopathy etc. Anyway, I wanted to thank you again. I am going to get the tumor tested for oncotype and recurrence but it might get me into chemo. I've had my surgery, now just waiting on an oncologist to call. Maybe it's a Canadian thing but we have surgery first then meet with the oncologist to do treatment plan. So here I am in the hurry up and wait again.

Thanks again for your insight.

Laurie

indahood

And KB, I'll look into Brachyradiation, thanks.

Laurie

Moderators

Hi and welcome, indahood -- here's a link from the main Breastcancer.org site on Internal Radiation (or Brachytherapy).

We hope this helps!

--The Mods

gb2115

Not just canadian---I had about a 3-ish week wait between surgery and seeing the oncologist for the first time. In my case it was pretty straight forward that surgery would be first. Then I saw medical oncology and radiation oncology on the same day (what a day that was), and things moved quickly from there. I do know that the surgeon presented my case to an entire team though, so at least it was being discussed by a team!

It's a busy time but soon enough you'll be on the other end being like, wow, has it already been a year?

indahood

thanks for the replies, ladies and to Chronicpain, thanks for the compliment. So so young as all that, 55 years old. I guess I am having wishful thinking. I just wish that I didn't have to do any damage to my health. It's surreal having breast cancer and everyone fussing around but not feeling in the least unwell. The only thing that has been slowing me down is having a bad case of chronic sciatica that I have been suffering from for the last 2 months, that definitely isn't fun, but not linked to the breast cancer. (I checked). Anyway, thanks for the info so far. I will continue my quest for information.

with love courage and strength to all,

Laurie

tgtg

Laurie--

You asked for experiences, so here's mine. While I initially did not want to do radiation after my lumpectomy, at the urging of my surgeon and my husband I saw the common sense wisdom in "cleaning up" the surgical wound, ridding the area of any rogue cells that could cause trouble later. After all, we clean up lacerations with iodine or whatever to prevent infection in the wound, and radiation performs a similar protective function--even with no nodal involvement and clean margins--since those rogue cancer cells are basically invisible, until, that is, they grow and cause trouble.

As for hormonal treatment, after doing much research in medical journals, I did reject anti-hormonal treatment, since at my age then (71), and with my stats (below), doing the anti-hormonal route would have increased my expected longevity by just three months--and the price for those three months would have been the possibility of stroke, DVT (we do at least one long-haul Asia flight a year), uterine cancer, glaucoma, osteoporosis, and the list of co-morbidities goes on. Instead I carefully shed 15+ pounds, continued to work out at the gym and to eat perhaps slightly more healthily than before, and relaxed and laughed at life a whole lot more. Besides, I found it ludicrous that MO's advise us to "lose weight" in one breath, and then in the next breath prescribe a drug that causes weight gain: tamoxifen causes the weight gain directly, while the AI's do it indirectly, by causing joint pain that impedes one's desire and ability to exercise or to just keep active!

I can also report that I just had my fifth anniversary visit with my surgeon and successfully hit the first milestone, being NED for 5 years--without hormone therapy! But, as I said before, my decision had a lot to do with my age and otherwise excellent health at diagnosis, with the profile of my tumor, and with my prognosis. It is not necessarily the right decision for everyone, but you wanted--and got--one survivor's experience of not caving in to the oncologists' "standard of care" argument, as if one size fits all.

indahood

Thank you tgtg, for your insightful answer. It's exactly the kind of experiences and wisdom and thinking I want to gather before making decisions for myself. Truthfully, I am open. I am open to radiation if it is the right choice for me. I am open to hormone therapy if I must but I want to make an informed decision that is right for me and, like you said, not just follow the one size fits all "standard of care". I'm thinking if I don't do the hormone stuff and change my estrogen levels through diet and weight loss then that's the way I would like to go. I am ESTORGEN + PROG - .

I have been carrying a good 30 pounds of unwanted weight for the last 5 years and this last year while traveling was drinking a little bit everyday. Addicted to sugar... all things I know were bad for me but I just liked my easygoing lifestyle. Even before the Cancer diagnosis I knew It was time for me to get on it and improve my lifestyle choices and now, the Cancer diagnosis, is for sure motivating.

I'm going to look into the differences in life expectancy too. I am 54. Stage 1 Grade 2 IDC

Again, thanks for your story. Laurie

indahood

Hi KB870, I live in a small town outside of Calgary Alberta. So I'll do my treatment in Calgary

Doofuscat

Hello,

I am on the fence too about radiation. I am Grade 1A, Oncotype DX 5, Estrogen and Progesterone +, H Negative. I had a lumpectomy with clean margins and 3 sentinel negative nodes. I understand cleaning up the surgery site with radiation but if my Oncotype score is low and I am planning on doing hormone therapy which should suppress any stray cells, why am I doing radiation? I am 59 and post menopausal and overall in pretty good health.

Any thoughts or advice are welcome!!

Veeder14

Hi Doofuscat,

I don't have any advice as I'm wondering the same thing but still waiting for my first appointment with the radiation oncology dept.

Indahood,

You mentioned 4cm margins were clear. Did you mean 4mm? My report says 1mm margins. I had margins in cm with melanoma though.

Runrcrb

Idahood - if I'm reading all this correctly, you're 55? Active and healthy except for this little thing we call cancer?

I was 55 at diagnosis. Had a few more spots than you so mastectomy was my surgical route rather than lumpectomy. Four lymph nodes led to chemo. Radiation was explained as killing any rouge cells but also making the area in-hospital for future growth. Who knows if I understood it correctly even after two conversations with my radiation oncologist. I'm E+P+ and am doing the aromatase inhibitor with minimal side effects. Talk to oncologists - both medical and radiation. Find doctors who listen to you, answer your questions no matter how many times you ask the same one, and with whom you feel comfortable.

I was back running 6 weeks post mastectomy; I swam and walked during chemo, walked to running during radiation. None of it was easy but all was manageable due to active lifestyle pre cancer and support of my medical team of my desire to be active during treatment.

Read all you can from reliable sources. I chose a traditional path of treatment but did veer from the original recommendation of a double mastectomy.

good luck with your decisions - what ever you chose will be right for you.

Georgia1

Hi Indahood and Doofuscat. I too was in the "lucky" category of small tumor, no lymph node involvement and clean margins. And I too struggled with deciding whether to do radiation and hormone therapy, ultimately doing both.

Radiation is excellent at killing any stray cells still in the breast on which you had surgery. You are probably eligible for three weeks of whole breast radiation or one week of partial breast radiation, rather than the standard six weeks. Do ask about those options since the side effects with shorter courses are much less than what our sisters with more advanced BC can have. I found it pretty painless and I liked the reduction in risk. That said, if you are over 50 and post-menopausal, there is a clinical trial called the "IDEA trial," that is testing the theory that some low-risk women in that category may not need radiation. So it is an interesting guidepost to discuss with your doctors:

https://clinicaltrials.gov/ct2/show/NCT02400190

Meanwhile hormone therapy is designed to reduce the systemic risk of spread to your other breast, bones, etc. Again, the risks vs benefits were clear for me since my ER+ was 95 percent which meant I'd get a truly useful reduction in risk; I think it was cut in half. And of course you can always stop taking the pills if you get side effects; your doctor will want you to try to commit to five years but studies show even taking Tamoxifen for two years helps:

http://www.breastcancer.org/research-news/2-yrs-of...

Hope that helps. I'd just advise getting as much information as you can, and realizing that we are all likely to live into our 90s. That finally pushed me into doing the three weeks of radiation - even a risk of recurrence of 4 to 11 percent was something I wanted to reduce as much as I could.