pre-menopausal - hormone therapy options

phoenix54

pre-menopausal - hormone therapy options

phoenix54

hi everyone

seems from my research that if you are pre-menopausal that the only hormone option for ER+ BC is tamoxifen.



am i correct in that assumption?

thanks

Barb

SISKimberly

Hi M-

I'm looking at making the decision about what to do after chemo and rads pretty quick here. I'm 46 almost 47, so perimenopausal at the moment. Did you have your ovaries removed or chemically shut down? Just curious to see what the options are and how others have done with their choices.



SIS KImberly

Anonymous

wolf--I had my ovaries removed (in my case, not by choice--ovarian rupture) and still take tamoxifen as there is still estrogen produced by the adrenal glands, skin and fat.

phoenix54

i have decided to have a hysterectomy - likely with everything out so i will go into surgical menopause. Here are my thoughts



a) no more tamoxifen - what happened to me is rare but the build up of uterine lining (5 cm yes that is cm NOT mm) and the huge polyp marks the end of this option. also the finding of atypical hyperplasia puts me at higher risk of uterine cancer.



b) although i am 53 i am not in menopause. i do not want to wait til menopause to take AI hormone therapy. it would mean at least 1 - 2 year wait until i am in menopause for sure to be able to start up again. think what could grow in those breasts in that time without that protection....



c) i want to get rid of the uterus where there is a high risk chance of developing uterine cancer. the BC roller coaster is enough let alone add in another one. the thought of 6 month uterine biopsies and d & C 's is too much for me to manage the axiety.



so i am waiting for my surgery date. and a breast MRI date - seems that the mammogram and US are not conclusive in looking my dense breasts and they want to check out the "girls" thoroughly - thank goodness!



Barb

phoenix54

i thought of chemically shutting down the ovaries - that is an option but check out the side effects. i decided not to put myself through that plus i HATE needles.

B~

Curlylocks

Hi Phoenix,

I was pre-menopausal prior to bc diagnosis at age 41 2 1/2 years ago.  My tumour was also IDC, 4 cm and 3 positive nodes, er/pr+, her-.  My oncologist wanted to be aggressive with my treatment due to my age and positive nodes.  I was put on Zoladex injections once every 3 months and Armidex.  My ovaries are being removed on May 26 so no more Zoladex....

Tamoxifen would be your only choice right now unless you either chemically or surgically removed your ovaries to take one of the AI's.

Your bc sister

Michele 

phoenix54

thanks Michele

sadly no other pre menopausal options so off to hysterectomy land it is!

phoenix54

thanks Michele

sadly no other pre menopausal options so off to hysterectomy land it is!

Curlylocks

Phoenix,

You dont need to have a hysterectomy to take AI's, just an oopherectomy which is the removal of your ovaries.

Michele 

Curlylocks

Phoenix,

You dont need to have a hysterectomy to take AI's, just an oopherectomy which is the removal of your ovaries.

Michele 

phoenix54

thanks Michele but there is atypia hyperplasia in the uterus that is higher risk for turning into cancer so the onc has suggested it all come out.



i guess a question is, if the ovaries do not produce estrogen will the atypia hyperplasia go away on its own?

B~

TenderIsOurMight

Barb,



If you take your ovaries out, hence allowing aromatase use, you signficantly drop your estrogen.



Is that enough to reverse the atypical hyperplasia, which is a histologic uterine lining change? I don't think anyone knows. Is that enough to prevent the atypical state from progressing? Probably yes, but no study done.



Also important: will just removing your ovaries reduce the past Tamoxifen risk of uterine cancer, in the face of atypical hyperplasia on D and C? Not until about four years from all cessaation of Tamoxifen.



I think your plan of both uterus and ovaries out sounds like a winner.

Tender

Curlylocks

Phoenix,

Sorry to hear that....it makes total sense to have the hysterectomy...

Your bc sister

Michele 

SISKimberly

AWB- I do recall you telling me this on a different thread. Ruptured cysts are so painful.



Phoenix- Sounds to me like you've gotten some good advice, and that you and your onc are on top of it. I want to do the total hysterectomy, too. I don't want to deal with the potential se's you've discovered could occur with Tamox...I'm not sure I want to take Tamoxifin...and to avoid it I need to remove the estrogen source. True the ovaries are enough, but if I take Tamox, there's a risk of uterin cancer...so why even go there? If I don't need the ovaries, I don't need the uterus or fallopian tubes either. The less available to attract estrogen based cancers the better in my book.



That's the thought right now...it could change.



Good luck to you,

SIS KImberly

phoenix54

Tender - thanks for your thoughtful answers - always appreciated! i hate the thought of major surgery but i think it is the best option



Kimberly - it is such a complex decision and there is no right answer



many women have taken tamoxifen with excellent results and avoiding the issue of major surgery. Apparently this happens but is not a common occurrence. AI's are not without their SE and risks too.



Good luck choosing! i changed my mind a bunch of times before i found the right answer for me

B~

Lynne

I was 43 and premenopausal when I was diagnosed. After my surgery and radiation (skipped chemo), I decided to have a complete hysterectomy (everything but the vagina). My tumor was both er and pr positive and my gyn had suggested for the past 3 yrs to have one (due to my extremely heavy periods). I have 4 children, so I was done with those parts anyhow (and less organs to get cancer)! I skipped Tamoxifen because there was only 2 months between rads and the hyst. I was put on Arimidex 2 weeks after the hyst.

Good luck Phoenix, with your surgery and Kimberly with your decision!

Lynne

windsor

I am on tamoxifen and suffering from hot flashes.  I can handle it during the day but at night I cant. Anyone taking anything for them.  I am canadian if that helps with names of drugs to take.  I have been on tamoxifen since august 2007.

Curlylocks

Hi Windsor,

For hotflashes over the counter I use Evening Primose Oil which does help a little.  Prescription meds would be Effexor (an anti depressant) but works wonders apparently for hotflashes, Megace and Clonodin (spelling might be work on that one).

Hope you get some relief soon, I am on Armidex and Zoladex injections so can appreciate your frustration with the flashes.

Your Canadian BC Sister

Michele 

phoenix54

windsor - ask about gabapentin - worked wonder for me and got rid of the hot flashes completely. it works better with some woman than others. i happened to be a great candidate for it thankfully

B~

windsor

I should of mentioned that I am currently taking gabapentin. Was taking it 3 times a day and now just at night.  It is not helping at all at night.  I stopped taking it during the day because it was not doing much and I can handle the hot flashes during the day.  I am seeing my doctor next month and I will mention the drugs that curlylocks mentioned.  I am extremely depressed and I am at wits end.  I just want to sleep at night without waking up 5 to 6 times. 

phoenix54

hey windsor - i took my gabapentin all at one - 600 mg at bedtime. maybe that would work better for you

lack of sleep makes it very hard to cope with life in general. a form of torture!

good luck

B~

windsor

phoenix54- Did you take 2 pills or 3 at night for a total of 600mg? My pills are 300mg each. Did you consult with your doctor or pharmacist on this or just tried it?  Do you take anything during the day. Thanks for your help. 

phoenix54

2 x 300 mg just at bedtime - dr recommended this. take nothing during the day.

goodluck!

mom2daughters

quick question if someone could clarify for me - If you take tamoxifen and then have your ovaries removed, do you switch to the other hormone drugs like AI's. I am in my 40's, and PR/ER+,  Trying to decide on a hormone treatment I really feel comfortable with.

  I had a T/V US done in November and they found ovarian cysts, not big enough to worry about now, and a thickened uterus.  Dr. didn't seemed concerned, said to follow-up on, then they found the BC the day after, so I took care of the BC first had mast in Jan.

  Now I need to make some dec. about hormone treatment.  So confusing--  with the tamoxifen and AI's and-- with/out ovaries.  I thought I read somewhere that someone was on Tamoxifen and had their ovaries out too, but then I thought I also saw someone had ovaries removed so the dr. switched them over to an AI.  Its all so confusing -   thanks for any help -

Cynthia1962

mom2daughters - you did in fact see both instances - women with and without ovaries taking Tamoxifen.  Before there were AI's, all women took Tamoxifen.  Now, some post-menopausal women take AI's, but not all.  AI's work completely differently than Tamoxifen and have different side effects, so some women choose to continue with Tamoxifen or switch back when they can't tolerate the AI side effects.  Some premenopausal women choose to have their ovaries removed in order to take AI's, usually because they personally can't take Tamoxifen or because they want to take an AI.  We are still waiting on research studies to find out if AI's are more effective than Tamoxifen.  It was initially thought that they were, but now that we know that not all women are good metabolizers of Tamoxifen, that needs to be considered as well.  It's also not known yet whether undergoing surgical/chemical menopause and then taking an AI has the same effectiveness as taking an AI after natural menopause.  There are still a lot of questions that need answering, but we should know in the next couple of years or so, I believe. 

I hope this info helps answer your questions and didn't confuse you further. It seems as if there's always so much to learn.  Good luck!

Cynthia 

cp418

mom2daughters - if you scroll through the earlier posts you should see several regarding oophorectomy and taking AIs. There are women here including myself who were premenopause and could not or would not take Tamoxifen. We had ooph procedure and then immediately were able to take AI drug.

Also read the posts from women who had side effects on Tamoxifen if they had a similar medical hx as you. This might help you determine if you will have any complications taking Tamoxifen and will help you decide what may be best option for you.

mom2daughters

Cynthia and cp418---THANK YOU THANK YOU THANK YOU.  You both have calmed some nerves.  I meet with a new onc. on Monday and am glad to go in with confidence to ask him questions on certain things without him thinking I am a complete fool. The world of hormones is so overwhelming to the newbie, thanks for helping - I'll see what happens on Monday, wish me luck. 

K

Seashell49

Hi All,

Starting Tamox end of March so just trying to educate myself.  What is Gabapentin?  Is it also an anti-depressant or ??

Thx

Sue

NativeMainer

Gabapentin is also known as Neurontin.  It is an anti-seizure drug that has been proven to be helpful in alleviating nerve pain.  Some of the pain from lymphedema is from nerves being irritated or pressed on by the swelling.  Narcotics do not work well on nerve pain, although they help some.  The drawback with gabapentin is that it often needs to be taken 3 times a day, and just about 8 hours apart to avoid withdrawal symptoms.  It also cannot be stopped all at once, but needs to be tapered off.  For me, knowing I will have pain for the rest of my life, I'm not at all concerned about tapering off.  I'm lucky enough to be able to take it twice a day and keep the pain at bearable levels and not have withdrawal symptoms in between. My onc says that her experience is that gabapentin helps LE pain in about half the patients she gives it to.

SISKimberly

Hey,

Just wanted to let you know I read on another thread that not only are some women unable to metabolize Tamox, but that certain foods like grapefruit and pommegranite (and others) and many anti-depressants react with the drug to lower or negate its effectiveness.  That's not good news considering many women are given antidepressants while on Tamox.

SIS Kimberly