how to do talk to your surgeon about opting out of chemo/rad?

Hasta

A few weeks ago I paid someone to drive me 200 miles to see the "most recommended" breast surgeon in my state. I already knew I needed a MX on my right because my tumor to breast size ratio is large (A cup).

The BS was wonderful but she wanted me to get on hormone suppressors and Ibrance for 10-12 weeks (to try and shrink tumor) and also wanted radiation after surgery. I told her if I was going to have radiation it would be proton radiation and she mentioned that proton radiation wouldn't be applicable to my situation. But she said I can't have a sub pectoral TE and regular radiation too. She didn't mention anything about proton rads and TE sub pectoral. It was a 2 hour appointment where she was trying to convince me to have the surgery and treatment at her facility (including radiation and using her oncologist). She even called me at home later that day to clarify to TE/radiation issue. She also had the founder of the facility come in and talk with me and check out my breasts. I didn't think my insurance covered their facility but they (the founder and the BS) said they checked and it did.

I wanted a recommendation for a BS in my area since I'd need a TE if I was to have reconstruction after nipple/skin saving mx. So she recommended me to a woman that I considered originally. My appt is March 5th. I want to approach this appt much differently. I'm single, have no children, am 62 yo, and have lived a full life. I'd like to take the risk and not have any conventional treatment but surgery. What do you think?

Besides having BC I feel wonderful. I'm extremely athletic, have been meditating and been a vegetarian since my teens. I also have a naturopathic oncologist that has me on a very aggressive protocol. She said I don't have to have any treatment I don't want and gave me some examples of other patients of hers. If I'm so healthly why did I get BC? I blame it on high dose bhrt for 12 years. My tumor started growing 10 years ago.

ElaineTherese

Lots of extremely healthy people get breast cancer. Worrying about what caused your tumor is pointless.

Surgery is the most important treatment you can get. But, you might want to see the results from your Oncotype Test before you make up your mind about additional treatment. After surgery, your surgeon should send your lump out for further analysis. In many, many cases, ER+ breast cancer patients find out that they have a low oncotype score, and that the benefits of chemo are outweighed by the potential harms. However, if you get a high oncotype score, then you're dealing with a more aggressive tumor with a higher likelihood of recurrence and spreading to other parts of your body. At that point, considering chemo and radiation would be indicated.

Yep, you don't have to get any treatment you don't want. But, your oncologist should fully discuss the risks of refusing further treatment. You need to be fully informed to make the best treatment decisions for yourself. Good luck!

exbrnxgrl

All kinds of people get breast cancer from those living the cleanest lifestyles to those who exist on junk food. Of course you’re better off maintaining a healthy lifestyle but that is no guarantee against developing bc.

An important thing to remember in dealing with bc is that you are the boss! Regardless of what any doctor, naturopath, or wizard advices, you are the ultimate decision maker. I have never used alternative therapies or practitioners but all medical choices are mine in the end. All the best

edwards750

I agree with other posters about healthy people being diagnosed with breast cancer. I’m sure it’s especially upsetting when you do maintain a healthy life style but the fact is they really don’t know for sure why some women draw the unlucky card.

Of course it’s your call what/or if you have treatments, etc. but your medical team will make recommendations based on their expertise.

I had BC in 2011; IDC, Stage 1b, Grade 1. I had a lumpectomy and 33 radiation treatments. I took Arimidex the first year and Tamoxifen the final 4 years. My MO said I didn’t need to continue taking the meds after 5 years.

I also recommend taking the Oncotype test. My score was 11 so I dodged chemo thankfully.

Good luck whatever you decide just be sure you don’t second guess yourself later.

Diane

moth

Surgery IS conventional treatment & on its own gives the largest survival benefit. The other treatments are all to reduce risk of recurrence, especially metastatic recurrence (ie incurable Stage IV).

It's absolutely your choice to refuse any and all treatments. Breast surgeons do not make decisions regarding systemic treatments such as hormone treatment, chemotherapy or targetted treatments...though sometimes they recommend those be done before surgery to give a better surgical outcome (for example if the tumor is large or close to a chest wall then attempting to shrink it before surgery can be beneficial). You need to consult with a medical oncologist about what they're recommending systemically and decide whether you want to pursue those treatments or not.

You do not need to have any reconstruction if you do not want either. You can just surgically excise the breast and move on.

Calculators like Predict https://breast.predict.nhs.uk/

& LifeMath http://www.lifemath.net/cancer/breastcancer/therap...

can give you an idea of how much benefit there is from additional treatments. Also, your Oncotype score would show how much benefit from chemotherapy you'd get. Hormonal treatments are demonstrated to reduce risk of recurrence but again, if you do not want that, you do not have to take it.

Remember the primary goal of early stage breast cancer treatments is to keep you alive for your normal full lifespan which means preventing a metastatic recurrence. However YOUR goal and your risk assessments might be different and you can make different choices.

As to why - it's just crazy bad luck and genes and environment and the mix of all those. I was very healthy, should have been totally in the clear. Not only did I get it once, it came roaring back metastatic even though I did *everything*. Otherwise healthy fit active vegan non smoking, non drinking. Random stuff happens.

Hasta

Thank you Elaine Therese, exbrnxgrl, Diane, and moth for your thoughtful replies. You woman are wise beyond your years. I want to apologize for my flippant remark about being perfectly healthy. That was my attempt to be lighthearted in a serious situation. Truthfully I'm not perfectly healthy. I have thyroid cysts that have been biopsied for years and had to retire early due to reoccurring stress related duodenal ulcers.

This message board has been invaluable for me. I cry when reading some of the stories told here. My faith keeps me grounded and I don't feel like I've been dealt a bad hand with this DX. This is part of life as far as I can tell. This is a learning experience for me and I will continue to read and learn all I can on this site. Thanks again, Ladies!

Hasta

I'm tentatively scheduled for surgery April 15th. My local breast surgeon was nothing like the 1st one I saw. My appointment got delayed from a Friday to the following Monday because the surgeon had an emergency. I took this opportunity to draw a computer generated flowchart of how I wanted the BC treatment and surgery/recon process to go. Since she was double booked on the day I saw her, she basically just agreed to my plan.... no pre-chemo, no more biopsies, no full body CT scan, no full body bone scan, and she didn't mention anything about radiation. The only requirement was a chest xray and I had that done the next day (it was clear).

I asked her to draw on my small breast where she would cut and how much skin would be removed for the MX. I was surprised how little skin would be removed and she said there's a possibility I could go direct to implant but be prepared for TE just in case. My PS appointment was moved up from 3/29 to 3/15...I lucked out. This guy is very busy doing breast cancer recon. and highly recommended.

The best thing that happened was an old friend of mine from Tennessee is driving across country to AZ for a family function. She had been trying to talk with me for months but I couldn't talk without getting emotional. I finally told her what was going on with me (in a text message) and she offer to come to AZ early and help me through the whole surgery process. Even as I type this, tears are running down my cheeks with gratitude. She's exactly what I needed right now.

My NO is treating me aggressively and all the treatment is making me feel really good. The details are for another forum. If anyone is interested I'll post there. Thanks for reading my story.