TRIPLE POSITIVE GROUP

i saw my oncologist yesterday.  im triple positive.  im also her3 positive (but newer studies have shown that 320mg of aspirin can be a receptor blocker for it (supposedly the her3 sits inside the molecule and doesnt react unless it mingles with the her2,  the asprin blocks the her3 from mixing with the her2) .  he also is doing another gene test on me to see if maybe another chemo treatment might be more affective.  such a foreign language for me.  i start treatment on jun 27 carboplatin/docetaxel/herceptin  (the caboplatin and docetaxel with be for six months with infusions every 3 weeks and the herceptin i will start with the other two but continue for additional six months)  he also is putting me on tamoxafin for 10 years afterward.

Hi everyone! I haven't posted in a long time but I still follow the thread all the time. I have a question for all those who were premenopausal and had their period stop during chemo. Did you period return? How soon after chemo? What have you been told by your docs about how this affects prognosis/risk of recurrence?

I'm 2 years PFC and I'm turning 44 this month. My period just returned. I knew something was up because the hot flashes gradually ended, the insomnia ended and I suddenly developed worse acne. I used to have really bad migraines (12+ monthly) but the migraines completely went away while I was chemically in menopause. Well, now the migraines are back along with my period-arghhh!

My biggest concern is how much this affects my risk of recurrence with more circulating hormones? I'm seeing the MO later this month and I'll get his opinion but when I asked in the past I was told that they would not consider removing my ovaries until my late 40's because of the risk/benefit. Anybody else in this boat and how are you handling it?

I'm not in that group but I had plastic surgery when I was 41 or 42 years old (about the age you were when diagnosed).  At 41/42 I was perimenopausal and my periods had stopped (no breast cancer involved).

I had the plastic surgery and within a month my periods started back again and they were fairly normal for a year and a half.  I asked the plastic surgeon about it and he attributed it to the steroids given post-surgery.  Of course, I'm sure they weren't anything compared to the volume of steroids we get during chemotherapy.  I relay that only for the steroid factor.  I have no idea how long the effects of steroids can stay in our systems.

I hope TonLee checks in because (IIRC) she had an oophorectomy and she's in her early forties (I think).  

dragonfly - Hi!!!  I had a complete hyst/ooph at 45 - cholesterol went up, was put on a statin (which I just got off of - yay!) and also developed osteopenia, which worsened with chemo and an AI.  These are pretty common issues when a hyst/ooph is done at that age - I am guessing this is why the hesitation.  I had that surgery because I had fibroid tumors too numerous to count and a never-ending cycle that went on for months. They put me on birth control pills for 6 months - didn't help.  They yanked the ovaries since they were in there - a fairly casual attitude - but it was prophetic because I had a pre-malignant 3cm mass in the right ovary that was undiagnosed.  I don't image well so they may have missed it - they missed my 2cm breast tumor and positive nodes also, so at least I am consistent, lol! What about Lupron and an AI in lieu of the surgery?  That way your estrogen would be suppressed instead of blocked.

SpecialK-Hi!!! Yes, I'll ask the MO about Lupron to start with because at least there is the option to stop it if I'm miserable. No going back after surgery. It's just so complicated. I hate the thought of having periods and migraines again but I equally hate the thought of the sexual SEs. It's been a terrible 2 years in that department and it seems that there is a chance it will improve now. I need to find some real data/statistics (if they exist) about how much risk this poses for recurrence so I can make an informed decision.

Hi ladies,

I saw my ob/gyn last week and there is a possibilty that I may need to remove my uterus and ovaries. I was supposed to take Tamoxifen last month but I delayed it to see my ob/gyn. When I saw my oncologist the last time, I remember him saying that even if I take my ovaries out, I still can take Tamoxifen instead of AI, but the chances of it helping me as far as reoccurrence may be a little less than AI. But Tamoxifen is better for my  body than AI.  Is this true? I am scared of having ovarian cancer or cancer of the uterus b/c of Tamoxifen and taking the ovaries and the uterus puts my mind at ease since I am ER+, PR+, HER-. I am 51 years old and still premenopausal. Has anyone here stayed on Tamoxifen even after the ovaries were out? I had double mastectomy last January and radiation afterwards. Do you think taking the ovaries out is a good decision? I had a polyp in my uterus and my ob/gyn said that he has to take the polyp out before I start Tamoxifen. Then I started to think why not take all of them out? What do you think?

My mom had her last period at 37 but she's always been a very heavy smoker.  My last period was at 43.  

So interesting to read everyone's experiences. Thanks for updating us, dragonfly. I had assumed that the tamoxifen would keep you in chemopause. Now I have one more question for my MO next week.

Hi dragonfly!  I was just reading about this yesterday and came across these two articles which I found interesting - 

Menopausal status and adjuvant hormonal therapy for breast cancer patients: a practical guideline

http://www.ncbi.nlm.nih.gov/pubmed/22795229

Adjuvant hormonal therapy in perimenopausal patients

http://www.ncbi.nlm.nih.gov/pubmed/21922394 - 

Omaz, thank you for these links.  I go for Herceptin in about an hour and a half, and they are going to put me on one of these drugs.  I think I am a confusing patient.  I haven't had my period since December of 2010 (I'm 53 years old) but I haven't had any symptoms of menopause either.  They drew hormones 3 weeks ago, and I see my estrogen is very high.  So what they are going to do with me, I have no idea.

I don't want Lupron! 

It helps though, to be armed with knowledge!

well my hot flashes are worse and i think my joint pain is marginally worse, other than that no other SE  -

as for testing - i was tested in sept 2012 and was told i was in menopause,  december i get my periods back.  My gyn told me that for pre-meno women even if your levels are menopausal you can 'snap out of it" very quickly, which i did so i dont think this is reliable for those of us who are far from natural menopause.  There is absolutely no consensus on this but my MO did tell me that they know that in a mets setting women do better with ovarian suppression and an anti-hormonal so she suspects they same would be true for early stage women trying to prevent a recurrance.  We had a long discussion about this as i wanted to stop the shots because of the flashes (they are pretty bad) but she made a compelling enough argument that i am willing to deal with the SE

Playing catch up here. I'm in So Cal with my daughter and granddaughter and have been here 8 days. So much great information here as always.

Pbrain I lost all the chemo weight but the last few years I put on a few and can't seem to get them off. Menopause really slows your metabolism. Granted I am not fat and some of it might be muscle weight but at least 5-6 lbs must go. My doctors don't seem to see a problem with my weight.

Pbrain..

My son bought a 100 year old house with a big front porch a few years ao and my gift for his bday was 2 rocking chairs. We had to call in a carpenter and he had to take them home to redrill all the holes and cut the dowels etc. Had to make some new ones. Give you credit for trying.

janiepants Usually when you're HER2+ they don't do an oncotype test because you do get chemo if your tumor is over 1/2 cm. If the FISH says you are negative then you are.

Your age does play a part in this. The best thing you can do is go for a 2nd opinion, even a 3rd. I highly recommend a teaching hospital or an NCI treatment center if you haven't gone to one already. Check out this link as a guide: linky 

I agree you don't want to overtreat. If your tumor is grade 1 then I would really be sure to seek another opinion. Chemo tends to work better on faster growing tumors. Grade 3 would be the fast grade, grade 2 moderate, grade 1 slowest. I would talk to your oncologist about that too.

Also I would ask if it would be better for to supress your ovaries with a drug called luprin so you can take an aromatase inhibitors like Anastrozole (Generic Arimidex) instead of Tamoxifen. Either way these might be the best drugs for you. Also if you are on Tamoxifen the new studies say 10 years on the drug not 5. Another thing to ask your oncologist about.

Feel free to come back and ask us questions but ALWAYS check with your doctor. None of us here are MDs.