What would you do?

Deamo1

3 weeks ago I had a dbl mastectomy. My cancer was lobular, 4.5cm, neg nodes, clear margins. ER+ 93, PR+ 98, HER2-. I took the MammaPrint test and it came back "low". The Mammaprint website says a low score means no chemo needed and/or hormonal therapy. My score came back 7% to 10% possibility of return in 10 yrs if no added therapy used. My Oncologist (who I do not like and I'm going to see another soon) is insisting I have hormonal therapy. I know it's my own decision and I really don't want hormonal therapy. I'm good with those numbers. Dr got pissy with me, disagreed and was very rude. What would you do in this case? Would you go ahead with hormonal if it was 7-10%?

beach2beach

Hi,

I would suggest also posting this under the Hormonal Therapy forum. May get more responses. You have to do what you feel is best. There are many who opt out or try and can't due to side effects.

Deamo1

Thank you! Will do!

Mucki1991

I would do the hormone blockers not everyone has terrible side effects myself included . I would also Get a second opinion but with a 4.5cm tumor they will probably agree.

Deamo1

Thanks for your input. Getting a second opinion soon.

dtad

Deamo...Glad you are getting a second opinion. Its a difficult and very personal decision. Ultimately its your body and your choice. I made the decision to refuse anti hormone therapy from the start. I have done several things to lower my estrogen naturally. Not tryin g to influence you. Just giving you some information on my choices. Good luck.

Deamo1

@dtad I would love to know what you are doing naturally. Please let me know.

star2017

I think I would go with the hormonal therapy, if it were me. You can always stop if side effects are bad

windingshores

The Mammaprint website says that a low risk score means no chemo and that hormonal therapy may suffice. Your post was confusing on this point and just want to make that clear. Here is a quote from the site:

"if a breast cancer patient is Low Risk by MammaPrint hormonal therapy (e.g. Tamoxifen) alone may be sufficient to further reduce her recurrence risk."

Oncotype only used Tamoxifen in their studies, and it looks like the same is true for Mammaprint. Aromatase inhibitors may be more effective. In any case, Tamoxifen halves risk of recurrence in the Oncotype studies which would mean your risk would go from 7-10% to 3.5-5%. 

Only you can decide. Many people take anti-hormone meds with little trouble or manageable trouble. I have many health issues but have been on them for more than 3 years. Yeah I get stiff, so I exercise and after 20 minutes it goes away. I had pre-existing osteoporosis which has gotten worse (can't take meds) but I would rather be disabled than dead (I have kids with special needs.)  So far, no fractures.

It really is up to the individual. I would try them at least, but that's me.

One other thing: I had reactions to all the generics (two different meds), and have to take brand name Femara. I got state help for the coverage gap. This is different from side effects but is more like an allergy.

Deamo1

NotVeryBrave

The hormonal meds are supposed to cut any residual risk in half. I guess you need to weigh the possible risks of them against the reduction of risk for BC recurrence. Make the best choice for you and try not to look back.

Some people have no or minimal SE's. Some of those SE's start right away and get better over time. Some risks of the medications occur over a long period of time. You should not be recommended to take anything if the risk to you is greater than the benefit.

I took Tamoxifen for only 3 months. I had a number of problems while on it. Most concerning were severe leg cramps that disrupted my sleep every night and a worsening mental or emotional state - which could have been related to the lack of sleep. I was still on Herceptin as well.

I worry a little, even with a great chemo response, about a recurrence. I've had a second opinion doctor also recommend Tamoxifen. So I intend to try again but will start with a really small dose (5 mg) and gradually increase it. And if I can't tolerate it or can't increase it - oh, well.

I'm of the opinion that most people should at least try what is offered after asking appropriate questions.

Peregrinelady

Not very brave, I started taking magnesium and it really helped me with depression while on Tamoxifen and I have heard others say it also relieves leg cramps. I buy a powdered form called Natural Calm at the health food store and put a teaspoon in my tea every morning.

NotVeryBrave

Thanks, but I did Magnesium, Calcium, Potassium, tonic water, hydration, leg stretches, pickle juice - basically anything and everything recommended to me.

I also quit a taxing new job and went back to my old job. And started seeing a counselor. And joined a fitness and nutrition class.

It took several weeks, like 6 or so, after quitting the Tamoxifen for things to improve.

Amica

I would try the hormonal therapy because it offers a substantial risk reduction. I was on Tamoxifen and then Aromasin for 10 years and had no bothersome side effects at all. So you could always try and see what happens.

I know I'm not a good example because of my recent reccurrence, but on the other hand the hormonal therapy may have helped keep me NED for as long as it did. who knows?

Deamo1

@NotVeryBrave--all good things imo! Good for you!

@Amica Good to know about not having side effects, thank you

urmysunshine17

from my understanding the return of cancer, or even developing a new cancer, is cumulative across your lifetime. I was told, for me, once my tumor is removed I have a 0.5-1% chance of it coming back each year. Which places my lifetime risk at 25%. That’s not a number I am comfortable with. I will be doing hormonal therapy on tamoxifen for 10 years. To me, it’s a necessary evil, and I will gladly take it if it means get to live a long life. But I trust my Oncologit’s. I’m glad glad to hear you will be getting