Skipping Chemo, Thinking About Skipping Radiation...

Pooki

I'm hoping to hear from people who have skipped radiation and/or chemo and how their journey on this crazy ride has been. I've declined chemo (had a Mammaprint on both the tumor and a positive 20mm LN filled w/ cancer that came back low risk) and I just had a planning session for radiation treatment done yesterday. I've been on the fence about radiation, but felt like I should do it since I am not doing chemo and will just be taking tamoxifen.

I was supposed to have a patient radiation education session yesterday, too, but they said that they would just answer any questions that I had while in treatment. I have pushed back and asked for an appointment to go over my questions and concerns before I go for my first treatment. I'm going to an NCI, but this radiation doctor doesn't seem to want to take the time and address my questions.

Anyway, I was diagnosed at age 40, IDC, 2.5cm tumor, grade 2 (one path review said grade 2, another said grade 1) ER+ (100%)/PR+ (100%)/HER2-, 2/20 positive lymph nodes, had a lumpectomy and axillary lymph node dissection. My final pathology showed extranodal extension 2.5mm and that LVI was present in the tumor and one of my lymph nodes.

Has anyone been in a similar situation as me and skipped radiation and/or chemo, and if so, how are you doing? I will also post this in holistic/alt medicine, because maybe it fits there, too....I will be taking the tamoxifen though, which I will start after radiation if I end up doing it.....Thank you for any responses!

AliceBastable

Not needing chemo based on low Oncotype or Mammaprint scores is not really the same as "declining chemo".

hapa

Radiation therapy is standard if you have lumpectomy, and you may have lymph node radiation due to the LVI and extracapsular extension.

JosieO

Pooki,

I suggest you try to sit down with someone connected with your case and get the answers you need. If the radiation oncologist can't speak with you, what about a medical oncologist? Has one been identified as part of your treatment team? If not, can you go back to your surgeon and ask for a referral?

Let me offer you some thoughts to better clarify your note.

- you did the right thing to get a MammaPrint test. If the results defined you as low risk, what the test is saying is that you would not benefit from chemotherapy. If no benefit, an oncologist would not advise you to have it.

- as Napa said, radiation therapy is usually done after a lumpectomy to kill stray cancer cells not removed by surgery. Killing the stray cells is intended to lower the risk of cancer recurring

- because you had cancer in two lymph nodes, the radiation will also help to eliminate any stray cancer cells in the lymph node area. As lymph nodes move lymphatic fluid throughout the body, not addressing the lymph node area means a higher potential of cancer recurring.

The best way to get the information you need is to:

- go to the details of your MammaPrint report. There you should find a further breakdown on the risks of recurrence, usually expressed as a percentage. Generally, radiation reduces that risk

- also, given the level of hormone receptiveness you have (with both your ER and PR at 100%), you are likely going to be given hormone therapy. Usually tamoxifen is used for women who are pre-menopausal, aromatase inhibitors if you are post menopausal. This drug therapy usually follows radiation. So another part of your treatment plan to understand.

- Finally, ask the radiation oncologist what treatment is like, and what adverse symptoms, if any, you should be aware of and how they would propose to address them. That will help you better understand the risk vs benefit of radiation.

Really, until you are talking to the medical professionals who will treat you, i'm no sure you will have confidence. So keep pushing and ask for the meetings that you need and have a right to.

Once you get this info, the posts that you read here will make a lot more sense. People want to help, but your most important help has to come from the people treating you.

Best wishes as you move forward

Pooki

Thank you all for your input!

JosieO - I really appreciate you taking the time to provide me w/ all that info - it was super helpful!

hapa and AliceBastable - The MO recommended chemo for the LVI, but left it up to me as to whether or not I should do chemo. The radiation was recommended because of the lumpectomy and because of the extracapsular extension.

I had been debating radiation, but I meet with the RO on Tuesday to go over all my questions. Hopefully that will bring me some peace of mind.

CindyNY

Pooki- my RO met with me and explained procedure and treatment. But the majority of questions we're answered by her nurse. They go over what to expect of your skin, what soaps & deodorant you can use, no shaving that armpit, lotions to use, etc... I think after you get answers you'll feel much better.

Best wishes to you either way - getting rad's or foregoing them.

JosieO

Pooki,

Glad to be helpful to you. My diagnosis has a lot of similarity to yours - a fairly large tumor, one positive lymph node, and a MammaPrint test that suggested no value to have chemotherapy. After my lumpectomy incisions healed I met with both a radiation oncologist and a medical oncologist. I had already received a solid explanation from my surgeon, so I knew what they would cover. Both were great- very thorough and answered every question I had. I was convinced that radiation was necessary and did undergo treatment with minimal side effects. The medical oncologist explained my entire MammaPrint report, especially the risk percentages and even before I started radiation I knew what hormone therapy I would receive afterward. All of my cancer team knew the plan and constantly reviewed it with me and with each other. I had confidence in the plan and their excellent care. I am at peace with the decisions and the treatment plan.

This is the outcome you need.

I’m not the only one-others have shared their experience and I can see good relationships and plans.

Have confidence, ask as many questions that you need to, and go forward.

This site is a valuable resource as well.

Again, best wishes to you moving forward. Keep us posted

Rav

Hello Girls,

Sorry for jumping in. I was looking for “skipping chemo".

Not sure if it will be offered as I don't have the pathology results yet.

Just wanted to say “hi" and get to know others who might skip chemo as wel. It would be good to know how people who skipped the infusions are doing.

All the best to everyone here.

PebblesV

Hi Pooki - my story is very very similar to yours so thought I'd post here as I too skipped chemo, but went through radiation (a full 30 sessions!) and came out just fine. Actually feel really good that I did the radiation treatment as I feel more confident now that it helped.

Here are my stats compared to yours:

- Age: 43 (vs. you at 40)

- Type: IDC ER+/PR+/HER2- (same, and like you, very ER+/PR+, mine is above 90%)

- Tumor Size: 1.7cm (vs. your 2.5cm)

- Oncotype DX 21 (vs. your low risk Mammaprint)

- Tumor Grade: 2 (same as yours)

- Nodes: 2 positive (same as yours - difference however is that I declined the bigger axillary node dissection, just did the sentinel node dissection, due to the high risk of lymphedema with AND and some studies that the survival rates were statistically the same - stronger even - for those who did just the sentinel node biopsy https://www.ncbi.nlm.nih.gov/pubmed/28898379 ... but because of that, having the radiation treatment was even more important for me as they would treat my axillary nodes just in case)

- Surgery: Lumpectomy (same as yours)

- Plan: Surgery, Radiation, Tamoxifen - No Chemo (same as yours)

RE: Chemo, I also declined like you. Luckily I had the Oncotype score to back it up as it projected the risk of recurrence with tamoxifen alone vs. tamoxifen plus chemo was exactly the same. But I completely get that you still decline even if you had the low Mammaprint risk as for me, while my Oncologist said that based on my Oncotype, he could not OBJECTIVELY recommend chemo, and admitted it would not make sense to introduce that extra toxicity to my system if the stats told him there would be no benefit, but then he said that SUBJECTIVELY he still might just because I'm younger and some women like to do "everything they can". I responded that I AM doing everything I can do to beat the cancer, but for me that's with the additional diet/nutrition and exercise vs. chemo.

Anyways, I was always fine with doing the radiation. And when I spoke to the radiologist, he said that those with more side effects tend to be people who have gone through chemo first, or those with fairer skin, or women around 20+ years older than us. So I knew I had the odds in my favor having skin that tans easily, no chemo, and being in my 40's (the hospital is the only place that calls this age young!). So I went into it with confidence that I could do this with minimal side effects, and also stayed vigilant about lotioning and hydrating and keeping positive, and it all worked out for me. I actually had one of the more aggressive radiation treatments with a full 30 sessions (a lot of others have 16-20 sessions) and also they targeted my nodes, not just the breast, so it was pretty aggressive overall. And I came out of it just fine!

So I wanted to provide that encouragement and shared story. We're all snowflakes so we are all different and you just have to choose what's best and right for you. I feel good about the path I chose re: the surgery, radiation and no chemo. Right now my current uncertainty is around tamoxifen and those side effects, haven't started yet... so that's a whole other story.

Best of luck and please keep us posted on your decision and how it goes for you!

KBeee

If the radiation oncologist will not answer your questions, ask to change to one who will. It is important that you feel comfortable with the person treating you should you go ahead with it, and that if you forgo it, that you decide to do so with all of the information you need. Ultimately it is up to you, but as a person who Tamoxifen did not work for and dealt with a local recurrence, I can say that recurrences suck. And I am one of the lucky ones because mine came back locally versus metastatic (and I eat a very healthy diet, am athletic, thin, and exercise each day...so those things did not work for me either, though I continue them). That being said, we are all individuals, and your situation is unique to you. You may have things that would make radiation riskier for you, and like in all cases, you just have to weigh the risks versus benefits. When I am questioning whether to do something cancer-wise, I make a pro/con chart. Seeing it written out helps me decide what's best for me. Best wishes with whatever you decide.

Cat5

greetings cindy - my diagnosis very similar to yours- 56y.o/dcis left side/stage 0-1/grade 3 /est +, prog -, herr2 -, onco score 25/removed sentinal & lumpectomy w/all clear margins;; this all began last april & i have recently decided no treatment; i did begin arimidex 4 months ago but between 3 oncologist (opinions) recomendations varied from radiation to chemo to mascetomy single to mascetomy double w/ongoing radiation. am going to stay on arimidex for 5 years & aggessively monitor w/3D & ultrasound; welcome any /all opinions .... be strong everyone & be a gladiator!

Cat5

am doing the same - best to you!

exercise_guru

I can't speak to the chemo because I had to have it and as far as radiation, I would be concerned especially because of those lymph nodes. I was 41 when diagnosed and so n.j I get that perspective. I would worry about stray cells getting away from the main tumor and setting up house somewhere else . Have you thought of using some natural stuff in addition such as mushrooms, broccoli sprouts and flaxseeds. You could look at nutritionfacts.org for that. Tamoxifen doesn't stop breast cancer it just slows it down (atleast that is my understanding) so those positive nodes would concern me

Meow13

I skipped chemo did AI drugs I am fine 7 years out. Supposedly I had to have chemo according to my oncologist but there are many factors at play.

MoonGirlJess

My first meeting with my RO was 1.5 hours. Not with a nurse but with the doctor. Find a RO you can talk to and have your questions answered. I just had my third radiation treatment of 33. Rads to whole chest, supraclavicle nodes, and chest wall. I was 41 yo at diagnosis and had 3 positive nodes, with an AND. I just finished chemo 4 weeks ago.

Best wishes to you! These decisions can be tough.