DCIS, no bio-identical hormones allowed - now what?!

imgonnamakeit · Guest

Ok. So I had only just started taking bio-identical hormones for a melange of issues (night sweats, hot flashes, cystic acne, irritability, lack of concentration, crying jags, etc.) when I was diagnosed with DCIS and the oncologist said "you should not be using any hormones". This is my biggest GRIPE of all. I want back on those bio-identical hormones! I used the creams for about 3 1/2 weeks and it was unbelievable how they changed my life.

My question is....what do I do now? I'm sick and tired of crying at the drop of a hat, waking up 2 or 3 times a night drenched in sweat (and that fragrance is not pretty), having to grab the nearest fan or piece of paper to cool off, acting like a nit-wit at work because I can't think straight, and seeing red unsightly cysts on my face that never seem to do anything but cause pain and make me feel self-conscious.

I want to start back on the bio-identical hormones but I promised the oncologist I would stay off of them until radiation is over.

Has anyone gone back on the hormones after being diagnosed with DCIS with a Van Nuys Prognostic Index of 9 (3 for margins, 3 for grade and 3 for size)?

Sorry for griping....

leo · Contributor Joined: 23 Sep 2004 Posts: 1575

Hello

As a doctor, our advice is obivously to not use any hormones once you've been diagnosed with breast cancer. As you know we use drugs that counteract the effects of hormones to prolong survival (tamoxifen, aromatase inhibitors etc).

For your menopause symptoms, there are other means to alleviate your suffering, I'd as your doctor for guidance about specific alternatives.

regards,
Leo
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Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

BFagan2067 · Experienced user Joined: 07 Oct 2004 Posts: 54

As someone who has experienced most of the symptoms that you are describing (except the acne) and also tried all the remedies for such as flax seed, vitamin E etc.. I can only say that the thing that worked best for me was a small dose of antidepressant... it made the world of difference in all these areas. The antidepressant that I took was Effexor. I just stopped them this past june. I stopped after 5.5 years. It was a low dose and I had to increase it over the years but still a low dose compared to that given for clinical depression. I also have many friends who take other antidepressants and feel that all of the symptoms associated with menopause have become much more tolerable. I never took hormones prior to my diagnosis thus could not tell you the difference in the efficiency of such. I would tell your oncologist that you are tempted to go back on the hormones and see if he can come up with an alternative treatment for you. Ask him about the antidepressants. Good luck and let us know what you decide to do...
HUGS!
Barbara

MuttsMom · Guest

Hi,
I wasn't taking any kind of hormones when I was dx Stage III ILC at 43 years young, but I can assure you, I would never even consider taking them now, no matter what. I was having all the same things you were describing when I was taking Tamoxifen, but I just had to accept the fact that for now, that's the way it was going to be. As Barbara said, their are antidepressants that help and the main one I've heard of is the one she mentioned, which was Effexor. I switched to Arimidex, and most of the symptons stopped, so I decided to stay on Paxil instead of switching.
You're playing with fire if you take any kind of hormones and it absolutely makes me mad beyond words that people are letting Suzanne Sommers come on their shows and promote the bio.....whatever hormones. She said that she refused chemo because it was poison, but she's taking mistle toe extract, which is nothing but poison and she's taking it for 3 years....... give me my 6 months of the "poison" chemo that's known to work, I'm not playing with any of this alternative medicine. My opinion is all it is, but that's after alot of researching, reading, studying because I wanted to live to be a ripe old age. No, there are no guarentees, but I'll go with what gives me the best chance. I do take a multi vitamin now, that I never did and I think as long as it doesn't interfer with chemo, suppliments are great.
I guess it's obvious I feel real strong about this subject and don't mean to sound so "bitchy" LOL.
You've had your onco, Leo who was so wonderful to start this forum and 2 ladies that were both dx Stage III and have been where you are saying the same thing. Please check with your onco about Effexor or another one that he might suggest and try them until you find the right one.
Best wishes
Nancy (who's on day 2 of not smoking and I'm sure doesn't have a delicate way to write things tight now..... ugh) I'm just trying everything possible to make me the healthiest I can be. If I were my ex, I'd be afraid, very afraid........LOLOL just kidding, he's not worth the effort)

Guest

Hi Nance!
I'm Nancy too! Loved your post....really. I appreciate your frankness. Funny that Efexor has popped up as I just talked to my oncologist today. She told me that my DCIS (high grade/5.5 cm) was 90% estrogen receptive. She said that's good news except she knows I don't want the Tamoxifen. I just have an aversion to anything that may affect my lower 1/2 due to all the trouble I've had with that area in the past. I'm all for the radiation though.

I did ask her if she received my last blood workup on my hormones as she mentioned the other drug (Arimidex) but said it's for post menopausal women. I don't know that I'm quite there yet as I'm in the thick of the hot flashes/night sweats etc. Drats. Maybe by the time I'm done with my radiation, they can do more bloodwork to see if I'm there yet.

Thanks again for your note Nance. Take care.

MuttsMom · Guest

Hi Nancy,
I'm glad I didn't offend you and come off as I had my claws out.....LOL
You're stage III like me, but mine was Lobular. You didn't notice if you had positive nodes or not.
I was 78/79% estrogen/progesterine positive and you being 90% is even better because that shows that you're more apt to respond to Tamoxifen/Arimidex in preventing a reoccurence, but of course we know there's nothing definate with this damn disease.
I wasn't even pre MENTALpausal when I started chemo, and that's why I was started on Tamoxefin. When I hadn't had a period for 6 months after I was done with chemo, the onco did a blood test that showed I was post MENTAL (sorry, that is such a more appropriate spelling...lol) pausal and switched to Arimidex.
My suggestion..........again.... lol is talk with your onco and weigh the pros and cons of Tamoxifen. With your hormone reseptors being so high, again, it could really be a huge benefit to you.
E-mail me anytime as I don't get on here very often.
I really like your name too LOL
Nancy

MNlady13 · Guest

Nancy, I took Paxil for a while, and it really did a number on my libido. No sex drive at all. It was all right with me, but DH had a problem with my lack of interest. Wink

Doctor switched me to Wellbutrin, which helped on many levels. Good luck with kicking the smoking habit. I am not a smoker and never have been, but both parents smoked. Mother kicked the habit about 20 years ago. Dad never did, but it was kidney failure and heart failure that did him in. Anyway, just want to wish you luck. Three days now, right? Hugs, Lauri

Guest

Hi Ladies,
Thanks for your replies and humor (much needed right now)!

Nance - you mentioned Stage III? I thought DCIS (non-invasive) was Stage 0? The Van Nuys Prognostic Index showed the highest risk factor (9) due to size, grade (comedo/necrosis) and margins (the first time around). I didn't opt to do the sentinel node biopsy as the doc said most times with DCIS, the report comes back clean.

I'm definitely going to talk to the oncologist about my bloodwork to see if I can take the Amiridex instead of Tamoxifen. I think that would make me feel more comfortable all the way around.

As far as the Effexor, I'm a little afraid of taking an anti-depressant for the hot flashes/night sweats. Most of my life people have said to me "you're always so happy" that I'm afraid if I take something like Effexor, somehow I'll lose myself. That probably doesn't make sense to anyone. I don't know how else to describe it. Kind of like my fear of taking Xanax (for my panic attacks which only started in '95 when I got injections of Depot Lupron for endometriosis). Thank goodness I don't have to take it daily - or even weekly...only when my mind gets the best of me and then my DH insists I take it as I get so tearful and immobile from putting off taking it.

As far as the Paxil goes, no worries about the libido issue. I've been "non-existent" in that area for years. DH has had horrible trouble with hips for years and years and only recently got the left one redone (8 hour surgery) and then the right one was done this past May. I guess it's good that he and I are in the same boat...but kinda sad too but you never know what God has in store. I sure hope He's planning on us being health in 2005 though!

Take care and thanks again for your kind replies.
Nancy

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