Thinking about declining any further treatment....

Meow13

I don't know if it will reverse but I got some degenerative arthritis from AI drugs.

Icantri

It is so comforting to see others with the same thoughts as mine. And also very helpful to see alternate points of view.

My situation is very much like yours poopysheep. I chose a mastectomy in an attempt to avoid rads. We'll see, still waiting for final pathology from surgery last week. I also have many doubts about about being on Tamoxifen for so many years. "What if I don't even need it?" is the question that keeps popping up in my head.

But, I will try it. I have to trust the experts and the data that suggests this is best. I know if I had a recurrence or mets and hadn't taken it I would regret it.

There will always be cases that fell outside the majority numbers. And nothing is certain. As much as we want to control our fate with this disease, I believe this is part of the journey --learning to accept that we are not in control. Heck, one of us could get hit by a bus tomorrow.

I think you should choose what feels most right to you. Would you rather go live as close to your old normal and accept the risk of possibly shorter duration? Or maybe live somewhat more limited but have greater odds of longevity? (Notice all the indefinite??? Possibly, somewhat, maybe. This does all seem like a big game of chance.)

What's great is that no matter what you choose, you will have support here.

Sjacobs146

poppysheep, one thing to consider is that being on the younger side, you have more years ahead of you to possibly develop Cancer. That is partially why my MO recommended chemo for me. Tamoxifen is worth a try. Except for hot flashes (which may actually be due to chemopause), I have had no side effects. Not everyone has SEs, in fact the majority don't. You can always stop the Tamox if the SEs are limiting

Regen

poopysheep - I am on the older side yet my logic might give you something to consider for your situation. Decision making is often a gamble and I like to know the odds. So, I try to start with statistics and then factor in the personal stuff. The pathology report meant my tiny, average-growing, non-metasticized tumor could be dealt with by a lumpectomy plus radiation. Because radiation is localized and for a relatively short time, I was ok with it. Currently I'm on the 8th of 20 treatments with no difficulties to report so far. I like to think any leftover cancer cells in my breast are being fried into oblivion. However, it's the systemic stuff - chemo and hormone therapy - that bothers me. Fortunately, I don't need chemo, but AI is being suggested. I already have osteoporosis and some of the other side effects so I want to skip those pills. Next time I see my MO, he'll be punching the relative data into a prediction program of some kind. If it turns out that taking those pills will extend my life by mere months or reduce a recurrence by a couple of percentage points, I think I'll be opting out. But as Sjacobs146 says, I could start the pills and then stop. Knowing that actually makes this one decision a little bit easier

So poopysheep, all I'm saying is that sometimes knowing as much as one can and considering the odds can help in the decision making process.

Regen

Oh, and one more thing Poopysheep - about "losing 10%" of your lung to radiation - what kind of radiation is that? Is it 3D-CRT or something else like IMRT? The difference between the two is like the difference between regular TV and hi-def. IMRT modulates and shapes the radiation beam so it can bypass other body structures and pinpoint the tumor bed. Apparently it's not offered everywhere and insurance companies often balk at paying for it (too "new" or expensive). Nevertheless, maybe it's an option for you

poopysheep

a little update...

So I did end up declining the radiation. They risks and side effects just didn't feel right for me with my lifestyle and level of acceptable risk. No one in the medical community put up much of a stink about it.

I did decide to go on tamoxifen however, my onco score came back at 15 which was higher (i realize it's still on the low end) than i had expected. Two weeks and so far no SE to speak of. Here's hoping that holds!

Meow13

bosum, my gp doctor thought it could be from the AI drugs. I guess it could be from age but it seems to have come on all of a sudden.

https://www.ncbi.nlm.nih.gov/pubmed/20621535

Kind of suggests what I have. Mine is mild to moderate in L4 and L6 and in my neck area.

dtad

Hi all...as usual I will dispute that the majority of people don't have SE on anti hormone treatments. My MO at a major NYC university based teaching hospital confirmed that 50 percent of us do not complete the 5 years due to SE. Add the others that do stay on them with SE and that's a big number. I'm happy for anyone that does well on them and I'm not saying we should't take them. I just feel we need to make well informed decisions. Its also not true that there are no permanent SEs. IMO its important to speak up so there is a chance that better treatment options become available and we don't have to suffer as much. I realize that this is not a popular opinion but it is mine. Good luck to all navigating this disease.

gardengypsy

Superstar~

How ya doing? Chemo hit me real hard, too. Do you have someone there to take care of you?

Stay strong!

gardengypsy

Yes, dtad. Too many stop hormone therapy because of the SEs..

Meow13

I only did 4 years. The last SE did it for me really bad dry eye in right eye.

Regen

poopysheep, congratulations on your decision and I wish you smooth sailing on Tamoxifen. You said you are an athlete and extremely active. I wonder, in your discussions with your MO, did the topic of side effect severity and a patient's physical condition ever come up? I've wondered if physically active people might have an easier time with side effects than more sedentary people.

poopysheep

Regen - my MO is not my favourite person. She doesn't really get me so I just took the pills and go back in 3 months and then I can just go see my regular family doctor from there on out.

I'm getting a few side effects, mostly it's just being more tired. I've kept up basically the same activity levels (got 17 days of skiing in already this season WOOT!!), but I did cut back a bit on the running - more cause it's winter and I generally will run less anyway.

I've got some hot flashes, the dry eyes thing that I don't know if its the pills or cause it's been super cold and skiing in the cold can sometimes make your eyes a bit funky too. My partner said he thinks I'm more tired than usual. Nothing at this point is anything that isn't 100% completely manageable. I've only done about 3 weeks ish of the pills so I'm not sure when the real effects start. I'm interested to see if I get a period or not.

Will you be started Tamox?

Regen

poopysheep - I think I will be starting Tamoxifen soon but reserving a decision until I get the results of my Oncotype DX test at the end of this month. Having to take the pills bother me more than any other treatment so far. I want to see the recurrence stats. However, I know the numbers are not a guarantee of anything so I'll probably, at least, give the pills a try. I'm hoping a long-time healthy lifestyle and otherwise good physical condition will lessen side-effects or make them more bearable.

pammiegr

I didn't do chemo on a grade three triple negative diagnosis because it was small and didn't increase my odds much and I was mindful of the long term effects. It is hard to live with but I figure it's a lottery as others have said. It is whatever you can live with. I do think they oversell the lumpectomy route on early cancers as it can come back a long time later. My grade three triple negative was in the same breast 18 years after a tiny unaggressive node negative thing. Go figure. I'd wack them both off if I had my time again and save a lot of radiation exposure.