I Can't Get My Oncologist to Listen!!

IDunnoWho

folks, I need your help with a problem I'm having withy oncologist in Saskatchewan.

I am taking tamoxifen after a bilateral mastectomy in May/14.

I am experiencing tinnitus, hair thinning,  weight gain, mood swings, insomnia,  and HOT FLASHES. Major hot flashes.

The oncologist will not agree that the weight gain, tinnitus, insomnia and hair thinning are related to the hormonal suppression therapy, but everything I've read here says it is.

She gave me venlafexine (Effexor) to help with the hot flashes. Stopped it in it's tracks, but the headache, nausea, insomnia, and feeling like I was only running on 1/2 power all the time were worse than the hot flashes.

Can anyone out there PLEASE give me some concrete arguments to use to tell her she's got to do some more investigation?

Any information is appreciated.

Thanks very much.

theresa45

Your symptoms are most certainly side effects of tamoxifen.  After almost 5 years on tamoxifen, I've experienced all your symptoms with the exception of tinnitus.  My side effects improved after about 6 months.  Oncologists often play down side effects of tamoxifen because it works really well at protecting against hormone positive breast cancer.  They really want you to stay on it.  My oncologist  gave me a prescription for gabapentin to alleviate hot flashes.  I didn't end up taking it, but you could ask your oncologist about it. I hope you get some relief soon!

Momine

I checked your DX and TX. It seems to me that since you have had your ovaries out and your cancer was stage 1, it is really debatable how much benefit you even get from the tamox. Also, because you have had your ovaries out, you could try an AI instead. 

ruthbru

I second Momine. Since you are menopausal due to having your ovaries out, you should be on an Al anyway (more effective in preventing recurrence & less side effects). Here is what the BCO information page says:

"A number of studies have compared aromatase inhibitors with tamoxifen to see which type of medicine was more effective in treating early-stage, hormone-receptor-positive breast cancer in postmenopausal women. Based on the results, most doctors recommend that after initial treatment (surgery and possibly chemotherapy and radiation therapy):

• an aromatase inhibitor is the best hormonal therapy to start with. When treating early-stage, hormone-receptor-positive breast cancer, aromatase inhibitors have more benefits and fewer serious side effects than tamoxifen"

 

Another upside to the Als is that, since there are 3 of them, if you experience side effects from taking one aromatase inhibitor, you can try a different one. Arimidex and Femara have similar chemical structures. Aromasin has a different structure. You can play around to find the best fit for you.

 

Get back to the doctor and demand to switch.....he is working for you, not the other way around!

 

Golden01

Or find a new MO. If she doesn't listen on this, she is not likely to listen when you have other concerns. Do you have a cancer research center near? You could even just go for a second  opinion and then make your mind up on who to see. 

Anonymous

I agree with everyone here; get a second opinion and/or a new MO.  The best thing for me is to think of all my relationships with all my medical team as a business agreement: I'm paying THEM for their expert service.  I've hired them to work for me. If a flooring guy came in and argued with me that he wanted to lay my hardwood floor in another direction than I had told him to, and he refused to listen to me, I'd fire him on the spot.  

Good luck with all this. I'm sure you'll get it straightened out, and it seems that you could stop  the med temporarily at least until you find someone who will work for you, not the other way around....

Claire

208sandy

Next appointment take in the pamphlet from the Tamox and highlight the se's that are listed - if she doesn't agree then that you have se's - time to find a new MO - I mean really do you want to have to deal with someone who has an "attitude"!  Also I'd ask to go on an AI - if you're past menopause that's what you should be on.

IDunnoWho

Thanks, everyone, I'm glad, first off, to know I'm NOT  losing my mind and that my oncologist might just be off her own rocker.

We don't have a research Center anywhere near us here. We gave a generic Cancer Center run by the Saskatchewan Cancer Association. I have to drive 2.5 hours from home one way just to see this woman, and then I've got no choice...it's a matter of "this is who has been assigned and that is that". Gee, thanks for assigning me to someone you just hired and hasn't proven herself....

She gave me suggestions first to take vitamin C for the vasomotor symptoms (medical term for hot flashes). Well, that didn't work, of course. Then she insisted that I take the venlafexine, telling me it would fix the hot flashes and "perk up your mood a bit". Excuse me? I am not feeling b**chy or blue...I'm HOT! My husband wasn't pleased with her comment, either. When we found out it was Effexor XR (I was on it for a long time, almost broke up my marriage!), we decided we would look for relief elsewhere.

She is bent on me taking this stuff, so I need other alternatives. She said she would put me on other meds (started with an "L"), but that might cause osteoporosis.  Good grief, woman, SERIOUSLY?! She is ordering a bone density test, that's on Wednesday. If nothing else, I'll see if the calcium supplements were worth the money.

I am looking into having acupuncture treatments. Some women having the same symptoms as I am, but with natural menopause, have had some success with that. Does anyone here have any thoughts on this treatment? Any successes?

There are no support groups accessible to where I am. Being able to bounce these ideas and frustrations around with people "in the know" is awesome, thank-you all so much for chiming in here!! 

Lou10

I'm wondering if what your MO means by the "L" medication is letrozole, which is one of the aromatase inhibitors (AIs). Bone loss is a side effect of the AIs, so doing a bone density test would make sense. I had a terrible time on Tamoxifen and was switched to letrozole. Good luck.

P.S. Letrozole is the generic form of Femara.

Momine

OK, by "L" medicine she means letrozole, as noted above. It is standard of care AND a really good idea to do a baseline DEXA before starting letrozole, because it can accelerate bone loss. So she is not off her rocker on that score. Also, effexor is commonly prescribed for this situation. Not that I would want to take it, but it is helpful in reducing hot flashes for many women.

As for those hot flashes, I had them on letrozole as well. Like you I had a hysterectomy as part of my cancer treatment, followed by starting letrozole. It is a major double-whammy, no gentle slide into menopause.

However, it eventually passed, just as it normally would in "natural" menopause. I think for me, the first 6-9 months were kinda killer, and then it slowly and gradually eased up. I am now 2.5 years out from the hyster and start of letrozole, and I really have minimal SEs and only very occasional and minor hot flashes.