Ovaries are being retired...chemically. Need advice

europa · 01-20-2015, 05:35 PM

So my new onc wants to start injections to shut my girls down. I have been dealing with major cysts since my ovaries were fried during chemo. I may or may not be getting my uterus out. But the ovaries are going dodo starting tomorrow.
Any you have had this done? Any side effects I should be aware of? I have had some rather weird side effects with Tamoxifen so I bracing for something horrific with these injections.
Anyone?

sassy · 01-20-2015, 06:21 PM

Europa,

I was on Lupron for four years to chemically shut down my ovaries. We took this route at the time because was surgeon was not in favor of my having additional surgeries at that point due to previous complications. When my surgeon gave the ok for the surgery to remove-- my oncologist wanted me to stay on Lupron because research was showing a benefit from Lupron in terms of recurrence. After four years we determined that I had gotten all the benefit possible, so I had an oophorectomy.

The Lupron can have some side effects. I was on Neurontin to combate both the discomfort and hot flashes. Stopped the Neurontin ahen I stopped Lupron and I felt like a new woman! If I could go back--I probably wouldn't change courses-- but the Lupron/Neurontin combo slowed me down mentally and physically.

What is your onc's reasoning for chemical suppression over oophorectomy? Will this be done with Lupron?

europa · 01-20-2015, 06:57 PM

So a new study showed a significant benefit to taking either tamoxifen or an AI in addition to either chemically shutting down your ovaries or removing them. I also suffer with reoccurring cysts that can get quite painful.
My concern is longterm. Shutting down your ovaries in premenopausal women increases the risk for heart diseases significantly and also increases the possibility of dementia and Parkinson's. So I'm wondering if the risks and the side effects are worth it. Or should I rough it out on tamoxifen until I'm closer to a menaosal age (I'm 40) and then get my ovaries removed. Thoughts?

sassy · 01-20-2015, 08:16 PM

We shut down my ovaries in order to allow me to go directly to an AI as opposed to Tamoxifen. I was 45 at DX showing no signs of approaching menopause. I was highly ER and relatively PR positive.

Your signature indicates that your hormonal levels are very low-- so I would Definately weight the possible benefit of suppression against other possible negative effects. Bring up the concerns with your onc to discuss.

Best to you,

kk1 · 01-21-2015, 08:09 AM

Hi Europa;

I think you need more information on your ER+ status. You need to know the total score not just the 10% of cells stained. For example if 10% of the cells are very weakly stained then you are on the borderline of being ER positive, and as Sassy suggested you might want to hold the course with Tamox. If however 10% of the cells were intermediately or strongly stained then you might be strongly ER+ and should consider and AI and Ovarian suppression. Usually they combine the scores of % stained and strength of staining to give you a score of 0-8. With 3-8 being ER+ and anything above a 5 being strongly positive.

I had lupron suppression for 5 years I was 42 when Dx ,the night sweats and hot flashes were terrible and never got better. Once I had the oophectomy they were much more tolerable. I get warm now sometimes but not with all the sweating and red face of the past-- which is nice. If I had to do it again I would have gone straight to an ooph. But I was stage IV and done with having kids.

all the best

europa · 01-21-2015, 04:07 PM

I spoke with my oncologist today and we went over the whole enchilada in great detail. I will go ahead and start zoladex or lupron injections for 3 months in combo with tamoxifen and see how things go. I will not be going through the hysterectomy just yet because once you have a hysterectomy and leave the ovaries in its much more difficult to get them out later if you have to. I feel good about this decision, the risks definitely out way the benefits. Thank you all for your comments. I love this group.

roz123 · 01-21-2015, 08:46 PM

hi
im on Lupron, 2 years now. I feel tired, hot flashes, achy but im not sure if its the shots or menopause? its really hard to tell. I think its menopause because I did get my period on tamox (which is why they shut me down) and I felt really great. The lack of estrogen is awful. I will get my ovaries removed closer to natural menopause. My onc is really pushing this as the SOFT results really supported AI+Ova suppression for pre-menopausal women who are er+

Cari · 01-22-2015, 03:07 PM

Hi everyone =) I am 32, triple positive. HIGHLY er+ and Pr+.

My physician is using ovarian suppression with Trelstar + Aromasin. So far, so good. Chemo sent me into chemopause, so I had the hot flashes and the night sweats already. *joy* I began Effexor and it really helped out a lot. So far so good, I am not having additional symptoms. I am actually pretty darn happy about that.
I am having my tissue expanders swapped out soon for the final implants, so I am excited about that.

europa · 01-23-2015, 06:36 PM

And the plot thickens. Looks like my uterus lining is thick and cystic. So off to surgery I go to remove a layer of the lining. Then, they are shutting down my girls. I will do the injections for a few years if it goes well and then I'll get a hysterectomy and oophorectomy.

sddinkinsmom · 04-07-2015, 10:21 AM

I am 37yr. old and my ER score was 8 and PR score 8. With tamoxifen for 7 months and cont. to have very frequent periods. Have had 2 uterine biopsy's both negative, but thick wall. Ovaries working overtime. They would like to do a total hysterectomy, bilat. oophorectomy. I have had a hard time with the tamoxifen, terrible mood swings.....all over the board. Has anyone felt better after a oophorectomy/hysterectomy after having a very hard time on tamoxifen? I am very worried I will feel worse. There was talk of Lupron, but with but with U/S results and ovaries working so hard, and high ER, PR scores the recomend this. Anyone else?

Jan. 15th 2014Dx with Her 2 + ER+ PR+ entire right breast tumor..10cm in craniocaudal dimension.
Grade 3.
Right axillary lymph node 2.3 cm. and biopsied positive for HER 2. Multiple enlarged right lymph nodes. Enlarged lymph node in pectoralis muscle.
Jan. 2014 PET scan done, no other organ involvement.
29 Jan. 2014 Port placed, 1st round of neo-adjuvent chemo started. Perjeta, Herceptin and taxotere.
April 2014 Admitted to hospital for pneumonia/sepsis.
13 June 2014 bilat. mastectomy.
18 July 2014 start 5 weeks radiation.
18 Aug. 2014 start tamoxifen.
Oct. 2014 Frequent periods, every 2 weeks. Uterine U/S and biopsy. Biopsy negative.
Dec. 2014 dx with lymphedema.
Dec. 2014 right arm infection to lymph system.
23 Jan. 2015 Last dose of Herceptin.
6 Feb. 2015 last reconstruction surgery.
March 2015 lymphedema with a right hand cellulitis.
March 2015 still having frequent periods every 2-4 weeks. Another uterine U/S and biopsy. OBGYN and Oncologist recomend ovaries removed. OBGYN would like to do a total hysterectomy.

Heathcliff4 · 04-07-2015, 08:49 PM

I just saw my oncologist today (ugh). I have had my ovaries suppressed with Zometa for about 8 months now. I was in chemopause for 6 months or so and we watched my estrogen levels to make sure I never got my period. Outside of hot flashes, vaginal dryness and looser joints (easier to injure), I have felt a hell of a lot better than when I was on Tamoxifen. I felt almost as bad as I did on chemo when I was on Tamoxifen.

If you are at ALL ER positive, they will suggest some type of hormone therapy along w. your ovarian suppression. Studies show that the combination is more successful in reducing recurrence. I was hoping that my doc would say that having ovarian suppression was good enough as I also tried Exemestane (and ovarian suppression) and after 5 months felt like complete hell. Nope. She was very, very insistent that I do the ovarian suppression and now try yet another AI. I've been on a break from hormone therapy for about 3 months, just doing the ovarian suppression, and it's been so nice.

So, to answer your question, ovarian suppression's not bad for me.

Good luck. I hope it's easy for you.

Kathryn

sassy · 04-07-2015, 09:09 PM

Heathcliff,

FYI, I tried all three of the AI's over the course of 8 years to see which was most tolerable. For me it turned out to be Arimidex.

Exemestane was the worst-- my hips were so stiff and painful I had difficulty walking.

Femara causeed joint stiffness mostly in my feet, ankles and legs overall, that did not seem to diminish with exercise.

Arimidex caused stiffness in my hands primarily in the mornings, and some overall body stiffness, however movement and exercise helped reduce the effect.

Hope this info might help!

PS- would that suppression be from Zoladex rather than Zometa?

Heathcliff4 · 04-08-2015, 07:29 AM

Hi Sassy,

Yes, I meant Zolodex.

We also had the Zometa discussion yesterday (among other topics including Neratinib and possible vaccine trials). I left feeling very defeated, as I expected. I'm 44 and hormone therapy has been absolutely terrible. I know it's my doctor's job to get me to take it. But, at what cost?

I appreciate your letting me know that your third attempt was acceptable.

Thanks so much.

europa · 04-09-2015, 04:55 AM

circling back here. I have been on Zoladex for two months and they are letting me off the hook. I know longer have to take it. Within three weeks of receiving my first dose I gained 10 pounds of water weight and then an additional 6 pounds 2 weeks after the second dose. I lost 50% of my hair and got menopausal achne. I am a site for sore eyes. Fat, bald and a face full of zits. And let's not talk about the fatigue. Ugh
So my Oncologist and I had a frank discussion. They ran tests on my estradiol levels before I got Zoladex and I was Perimenopausal. I have not had a period since I finished treatment. ANd my tumor was only 10% ER positive. WHat he told me was that the SOFT trial measured the combo of ovary supression and hormone supression in women in their early twenties to women at 35. I was 37 when I was diagnosed and what he also said was that the study showed great results for those that had estrogen raging through their bodies. Women that were having their periods normally or that were at an age where they naturally had a healthy flow of estrogen in their bodies. So I no longer have to do the shots. But at the age of 45 I will be having a complete hysterectomy and oopherectomy. Now I have to start losing this weight, load up on Biotin and go get some intense facials.