What next?

WayTooYoung · 02-03-2013, 07:17 PM

Hello sisters,

So after many weeks of trying to figure what to do since my 2nd chest wall recurrence, I finally had surgery to remove the nodule Friday. I am healing nicely, but oncologist wants me to consider taking out my ovaries now and starting Femera/Herceptin. My tumour profile shows I am 100ER+ and of course Her2+. Do you think that is my best course of action at ths point?

My head is spinning from all these decisions...not sure what to do. Any feedback will be appreciated.

Joanne S · 02-03-2013, 09:31 PM

Hello WTY,
So glad that surgery is behind you now and that you are recovering nicely.

The decision to have your ovaries removed is a very difficult one, but it's one only you can make. Some of the woman here had their eggs saved on ice for possible future use when they opted for surgery. But I imagine it all depends on each individual's personal situation. My understanding is that younger women (those still having periods) are at higher risk of mets than post-menopausal women. And I know of the two younger BC ER+ women at my oncologist office, both opted for oophorectomies.

If I could go back in time, I would have gotten my ovaries out as I now have mets after five years of NED. My situation was different than yours, as I was 50 at the time I was diagnosed and was done having children. Now, I just can't help but wonder if I would be NED now had I had my ovaries out 5 years ago. Unfortunately, I don't think there a way to ever really know. However, on the other hand, I may still have gotten mets after 5 years without my ovaries, but then I would know that I did all I could do decrease my risk.

All I can say is take time to weigh all the pros and cons, as well as, your risk is before making the best decision for you.

Wishing you all the best and conintued improvement! Hugs, Joanne

KristinSchwick · 02-04-2013, 07:47 AM

Way too young,
One more thing to consider about saving eggs. In order to harvest eggs, they pump you up with hormones (yes estrogen) to stimulate multiple ovulation events. Then another complicating factor is that eggs (themselves) don't freeze and thaw well. I believe there are only a few healthy babies born (in the US) when freezing was done prior to fertilization. To really have good chances of having a healthy baby (regardless of who carries it), you need to freeze the fertilized embryo. This was basically a deal breaker for me, I couldn't bring myself to create life (multiple embryos) store them in a freezer and potentially never use them. I'd always be thinking "poor little (name)" still stuck in the liquid nitrogen.
Kristin

That is why I chose to say farewell to my ovaries and eggs, and be open to the idea of an egg donor if God gives me the opportunity.

tricia keegan · 02-04-2013, 01:09 PM

Hi and I hope you continue to recover well from your surgery, I had my ovaries removed but I was forty six and not sure I would have done it at your age as a preventative. I was wondering if you could take Lupron shots to shut down the ovaries and enable you to take Femara which seems to be a bit less drastic!

Cathya · 02-04-2013, 04:04 PM

Waytooyoung:

If you want a second opinion I have an wonderful oncologist in Ottawa and would be glad to give you our information. Just email me. These are hard decisions and at your age very life changing. My oncologist is very experienced and I would not hesitate to recommend him to you.

Cathy

linn65 · 02-05-2013, 06:59 AM

How do you know if you should get your ovaries removed??? I am just on my 4th week of Rad's have not even had time to think about my ovaries. I have the Mirena now, and I keep thinking I should have that removed, but everything is a process. I know you need to be your own advocate for things so how do you know what you are supposed to do. Do you go to your GY doctor and ask or what??

kk1 · 02-05-2013, 07:47 AM

an alternative is to use zoladex to suppress ovarian function and then you can still take an AI such as femara . I did that for many years. They just need to monitor you hormone levels to make sure the zoladex is doing its job.

K

KristinSchwick · 02-05-2013, 08:30 AM

Are you on any type of anti-hormone therapy? I would seriously consider a second opinion if they have not discussed anti-estrogen therapies with you.

linn65 · 02-05-2013, 09:06 AM

Kristin if you are talking to me I just started taking Tamoxifan, and they have not discussed removing my ovaries. Then I did noticed in my signature line I had 73% for ER+ but it was 30% I messed that up if that makes a difference.

LoisLane · 02-05-2013, 04:15 PM

WaytoYoung. Sorry you are going through all of this at such a young age. I dont know who your oncologist is at Sunnybrook but I am sure that he/she is suggesting to you options that they feel benefit you the most to protect you. You certainly could get a second opinion with another oncologist in Toronto if you are conflicted about this advice, or go back and speak to your oncologist again. take care.

KsGal · 02-05-2013, 06:13 PM

I think getting a second opinion would be an excellent idea. As Kristin said, if it is something you need to do, there are a lot of other ways to have children when the time comes. Im sad that you are in a situation where you have to face such a difficult decision as such a young age. Im in my 40s. Gather all the information you can. Certainly sending prayers your way.

Jackie07 · 02-05-2013, 10:45 PM

How about banking the eggs so you can use them later with a sorrogate mother if you strongly wishes to have babies?

Even though I was fifty when I had my hysterectomy/oophorectomy, my doctor still put me on Tamoxifen for a while before switching to an AI. And my Er was only 5%...

WayTooYoung · 02-12-2013, 08:08 PM

Hello everyone and thank you for all your advice. I spoke to a gynecologist yesterday and I signed the paperwork to go ahead with the oopherectomy. Although I still wasn't sure at the time of signing, when she checked her calendar to book me for a surgery date, she was booked up till May! She gave me a prescription for Zoladex in the mean time and I felt much better about going that route first. If the shots work and not too much a pain, I can always push back the surgery if need be.

Now my next question is...what types of symptoms can I expect to feel? The DR told me some but I wouldn't mind hearing from people who have actually removed their ovaries and tubes or have had Zoladex.

I wonder if there is a difference in symptoms between Zoladex and oopherectomy?

Joanne S · 02-13-2013, 12:41 AM

This might give you some answers: http://www.rkefford.com/ZoladexandSt...heovaries.html

roz123 · 02-15-2013, 10:06 PM

WTY - I just started zoladex (Lupron) shots, I've had 2 so far. I get them monthly. I was recommended to get them because my period returned (with a vengeance) about 14 months after chemopause. I will see how I do with them and then decide if I want the ooph
as for side effects, my hot flashes are back (they disappeared a few months leading up to my period returning which was a red flag that my ovaries were up to no good and producing estrogen) they are no worse then when I was in chemopause. I really haven't had any noticeable SE, nothing new -still achy, creaky joints but that happened when I started tamox

NEDenise · 02-16-2013, 08:58 AM

W2Y,
I had Lupron shots when I was about your age and the worst SEs for me were the hot flashes (mostly at night, and they were epic) and difficulty controlling my temper.

It would flame up, I'd bite someone's head off, or otherwise behave badly, and then it would pass and it was as if a different person had been in my skin for those minutes.
Very unsettling.
The good news is...my gyn at the time said that my anger issue was a rare side effect.
The hot flashes though...sorry I think they're pretty common.

I bet compared to everything else you've been through lately...Lupron will seem like a walk in the park. Good Luck! Keep us posted.
Denise