Why I need to say no to rads and chemo, wouldn't you?

DianaNM · June 2015

In 2012, I chose mastectomy over lumpectomy, because I was told if I had the latter I HAD to have radiation. Just felt that I couldn't have rads. Not a great choice, many complications to mastectomy including losing 14 more lymph nodes than I should have.

Now I have another tumor in my left breast. Same type, much smaller. And it's been there since my first MRI, so not a recurrence. I am having a lumpectomy this time so as not to deal with the complications of a mastectomy again. My doctor is planning to put in an appliance to allow me to do 5 day focused radiation if my nodes are clear. So far they appear to be clear.

Once again, I'm freaking out about rads. In my 20s, I spent a year working at a nuclear weapons plant that has since awarded a class action type settlement to former employees that have contracted cancer. I worked there five days short of getting an award.

In my 30s, I worked at an office on a local base that had old jet fuel leaking into the well that supplied our building. I drank a lot of fountain water, and yes sometimes it stank and was yellow. Didn't drink it on those days! Anyway, I got very very sick and was diagnosed with chemical sensitivities. Took early retirement, others from that office have had major health problems. That is why I would never consider chemo, anyway.

But I'm also thinking because of the radiation exposure, I should also not consider rads. I blame tumor #1 on wearing my iPhone on my purse strap many hours at a time, #2 on many hours sitting with my iPad on my lap with the wifi on. This may not be a problem for everyone (well kids shouldn't do it), but it seems to be for me. So more radiation seems like a very, very bad idea.

I've searched for studies about rad treatment for cancer after radiation exposure when younger. Can't really find anything, not a recognized problem I assume. But if you were me, wouldn't you feel that you need to try everything else besides chemo and rads?

Surgery, yes. Now to try and explain this to my surgeon. Radiation is radiation, right?

Italychick · June 2015

did he mention IORT? Intraoperative radiation therapy. That is where they do radiation at the time they remove the lump. It is a one shot deal, but not all women qualify for it. And not all facilities have it.

DianaNM · June 2015

No, hasn't been mentioned. It's still radiation, right?

Italychick · June 2015

Yes, but you get one dose directly into the tumor cavity at the time of surgery.

DianaNM · June 2015

I don't think it's done here. Sounds like an option though.

Tomboy · June 2015

It sounds like that is what you are going to have done-- the appliance he would be installing is like a bubble type thing, where they would hold the radioactive substance? Brachytherapy?

SpecialK · June 2015

IORT and brachytherapy are not the same thing. Here are some points about both techniques:

IORT:

http://www.breastcancer.org/treatment/radiation/types/intraoperative

My understanding about this technique is that you need a fair amount of breast tissue surrounding the excised cancer, so it may not be appropriate for small breasted women, or those with larger lumpectomy sites.

Brachytherapy:

http://www.breastcancer.org/treatment/radiation/types/internal

My understanding about this technique is that it is most commonly used for post-menopausal women, so age and menopausal status is a factor.

Tomboy · June 2015

Thanks, Special!

Sabel · June 2015

Hi DianaNM,

Like you, I was diagnosed with IDC in 2012. I was willing to have a lumpectomy, but no further treatment. Annual mammograms I could handle, but I wanted to be able to enjoy what years I had left and I have.

My original prognosis was a two year survival rate and I passed that a year ago. The oncologist sees me once a year, but has told me that if there's something unusual , I should phone him. So far so good.

My decision regarding treatment might have been different if I had been younger than 70 at diagnosis. That's why I think that our choices should be personal based on our own parameters.

DianaNM · June 2015

Thanks for the information on IORT. I will do some more research if there's any available. Hard to tell with something new. It sounds like less, and more specific radiation if I decide to have radiation. My surgery is scheduled for the 18th, so I need to move quickly.

Sabel, I am 62. Except for a difficult recovery from mastectomy, my health is the best it's been since my early 30s. By diet and supplementation, and avoiding bad things, and now a walking program, I'm free of joint pain, clear headed, no stomach problems. And I don't get sick. I just get tumors, apparently.

I really like having a nice quality of life. It's hard to risk it. I wish I knew the right answer, but praying it will come to me.

DianaNM · June 2015

And it isn't done at UNM. Not in NM. I could got elsewhere I guess, but since I'm iffy on radiation anyway not much point.

labelle · June 2015

It really is your choice. Radiation treatment is pretty standard after a lumpectomy, but you do not have to consent to have it done. I often read on here of people who seem to believe they have to do whatever a doctor recommends. Doctors work for us, not the other way around. Given your fears and if you are node negative and they get good, wide margins, I'd think twice too. But I think the choice to get the kind of RADS you are talking about rather than regular has to be made at the time of surgery not later. Talk to your doctor more, make a decision and make sure your doctor is aware of your wishes. If you don't want radiation treatment, do not consent to the procedure they are talking about, it is radiation and you should be informed of all your choices, the pros and cons of this procedure prior to giving consent.

Italychick · June 2015

if you decide to do no radiation, tell your surgeon to be very generous with tissue removal. You want to try to get at least 1 cm. clear margins all around the tumor site if possible. They can always fill in the dent later with your own body fat. I had 8 cm x 8 cm x 4 cm removed to get wide margins, but I am a size D breast. I am almost five months post surgery, and I have a small dent on the side of my breast, not a big deal and you can't even tell with a bra on.

I think IORT can only be done at the time of the lumpectomy, and I'm not sure if they would go back into the site a second time later. I haven't researched it much

I would never judge what you do or don't do, but with no radiation, the wider the margins, the better.

Keep us posted on how things go!

DianaNM · June 2015

labelle, I absolutely agree. My body, my choice. I do hold my tongue sometimes, but when my 85 year old aunt was diagnosed with BC, I did tell her DON'T have rads or chemo! She was being urged to by her doctors.

And Italychick, I was thinking this at my last meeting with my surgeon, but didn't say it. Guess I didn't want to say at that time that I wasn't planning rads. I will tell her though, before surgery.

Italychick · June 2015

I'm not sure I would tell your surgeon if that is your choice. A lot of them will start beating on you and trying to wear you down to do the standard of care, and then fear creeps in. I treated mine as an excisional biopsy, reserving my right to do rads or a mastectomy at a later date, which I have discussed with my surgeon. But I have never said no rads to a surgeon, that raises all kinds of red flags. Hopefully that makes sense. I also resisted biopsies and went straight for surgical excision and said take as much tissue as you need to in order to get wide margins so I can keep my options open.

Some surgeons get funny if they know you are not doing rads, and they may not want to do the surgery. The less you tell the surgeon, the better. So I would opt for saying get wide margins, I want 1 cm. margins to maximize the effect of surgery

DianaNM · June 2015

Theresa, I was just told no biopsy, no surgery. That was by the radiologist though. So I had the biopsy. Good for you, standing your ground and getting what you wanted. The seeding from the biopsy worries me.

Meow13 · June 2015

My surgeon made it sound like I was legally bound to do full breast radiation if I had a lumpectomy. Absolutely no choice so I did mastectomy. I was bully to do chemo but I said no way in hell. I was made to feel like a coward or worse but I held my ground.

Italychick · June 2015

you can request that they take out the biopsy track when they do your surgery. I have seen other women post that they did that.

meow13, so 3 and 1/2 years out you are still doing well?

Meow13 · June 2015

yes doing good can't wait to be done with AIs

Italychick · June 2015

that is awesome, so happy for you

SelenaWolf · June 2015

You may find the following articles helpful. Many are beginning to realize that - for some groups of women with certain breast cancer profiles - lumpectomy without radiation may be a valid choice. Lumpectomy + radiation has become standard-of-care because both are needed in order to provide similar long-term outcomes to mastectomy alone. It's not that cancer centres "push" radiation per se if you want a lumpectomy, it's that they must give you a treatment option with comparable results to mastectomy. A lumpectomy alone has a much higher incidence of local recurrence and, since cancer centres are geered towards providing "curative effect", offering you a lumpectomy without radiation would be unethical. That's why it seems like it's "pushed" and why some cancer centres will not perform a lumpectomy without the accompanying radiation.

However, if it's your personal choice to have the lumpectomy alone - fully aware of what the potential recurrence risks may be - then it is your decision. Talk to your treatment team about your cancer profile; you may fall into the growing category of women for whom lumpectomy and hormonal therapy provide adequate protection against recurrence.

http://www.cancernetwork.com/oncology-journal/lumpectomy-and-without-radiation-early-stage-breast-cancer-and-dcis

http://www.radiologyinfo.org/en/info.cfm?pg=breast-cancer-therapy

DianaNM · June 2015

Thought i would update this. My surgery on June 18th went well, with clear margins and nodes. I did ask the surgeon about the biopsy track, and she said that's not usually a concern with breast cancer (more with lung cancer) and the radiation would take care of it.

Now it looks like I'm going to Phoenix in 2 or 3 weeks for brachytherapy. Tumor is Luminal B with a ki-67 of 58%. Surgeon said I need to start radiation four weeks after surgery and my recurrence odds are "astronomical". Ok, I'm convinced. I found a member here that had the same treatment and has been wonderful about answering questions and soothing my fears.

Is this going to affect my thyroid, does anyone know? I'm already having problems with it and taking meds. Possibly Hashimoto's, but will deal with that later.

labelle · June 2015

The radiologist who treated me said "scatter" from the RADs would almost certainly hit my thyroid if he did the superclavical area as he'd planned. I do have Hashimotos and definitely didn't want to irritate my cranky thyroid, so I told him to skip the superclavical area and he said "Okay, it probably won't matter in your case." So, WTF was he going to do it for to begin with? Yes, they are practicing.

However, if you are having brachytherapy I don't think "scatter" will be an issue.

Why I need to say no to rads and chemo, wouldn't you?

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