FINAL UPDATE IN 55/UPDATE IN 38 An honest plea for well thought out WWYD replies

[elektra]

I had read your original post OP, and is such a big decision- I was not even sure what I would recommend!
I do think you made the best decision possible at this point though. I really think it's the best way to go, all things considered. Good luck with everything!

[Globetrotter]

That sounds like a good plan, vigilant without taking extreme measures.

[Still-in-Shock]

My gut says to put off the hysterectomy, since a few years down the road, they may find a way to deal with uterine and ovarian cancers that are much less painful than is done today. It would also give you one less thing to think about in the short term. I am glad that you were able to find out as much info as you did about your breast cancer, even though there isn't enough info these days.

[lizzywednesday]

What a relief! So glad you got an answer that includes a plan for future action, Binkandbee!

I hope you do well with the upcoming surgery and this procedure.

[twowhat?]

I talked to one of my Dr.s today and he said at this time, with the information that we have, and considering my age, it is perfectly reasonable to do the ligation and ablation only and monitor me for ovarian cancer as if my gene mutation puts me at an increased risk for cancer. That means, transvaginal ultrasound and a blood test every 6 months. I asked if this is the recommendation he'd give his own daughter and he said yes I've got one last call to make, but I really think this is what I'm going to do.

This is what I would choose as well, given that you have a variant for which there is no conclusive data, and the folks on your side of the family who had breast cancer did not also have uterine or ovarian cancer. The monitoring sounds like a good plan. You can't predict the future...you can only weigh the pros and cons. Maybe if it helps to see a therapist who can help you come to terms with your decision to try to nip the constant worrying in the bud, then go for it.

Hugs, P & PT to you!

[ecofem]

Do you have a Gynecological Oncologist? I am not in the exact same circumstance as you are... but there are similarities. On my team of medical professionals, I have a Gynecological Oncologist at the helm at my nearest NCI center. This expert is the Chair of the Breast Center and coordinates/orchestrates care from my breast surgeon/plastic surgeon/local OBGYN/local PCP/and Genetic Counselor. I am in the process of considering prophylactic surgery for my "female parts" and my GYN Oncologist is the guy advising me on both surgery and monitoring protocol. I see him every 6 months.

I really recommend FORCE as a resource. There are folks there like you, who are bc cancer survivors, and are making decisions on the rest of their plumbing, so to speak.

Good luck!

[Binkandabee]

I don't have a gynecological oncologist, no. I suppose this is what is making this so hard on me is I feel like I'm a bit in the dark. My breast surgeon is the one who ordered the gene test and is basically the one guiding me through this. Well, him and the ob/gyn in the same city (I traveled out of state for my mastectomies and reconstruction).

I have an appointment with my local ob/gyn and will get his advice on this as well as he needs to be on board with the monitoring. I just don't have anything telling me that being so aggressively proactive is the right things to do....it's all a big maybe. Now, if I were to get any indication in the future that I'm at a higher risk, then I will have no problem removing everything. My thinking is that at that point, the side effects of the removal outweigh the risk of getting uterine or ovarian cancer. I'm just not there right now. I may change my mind over the next year or two if my anxiety every six months during the monitoring starts to get to me, but for now, I "think" I'm ok with that.

[Binkandabee]

I had an appointment with my local OB/GYN today after a strange turn of events these past three weeks and it turns out that a hysterectomy is now the recommended course of treatment for me over an ablation and tubal ligation. An ablation will likely stop or reduce my periods, but it won't stop the pain that I've been having these past several weeks. So, hysterectomy it is and I am 100% confident that is the right choice. The question now becomes....take the ovaries or not?!?!?!

I had a long discussion with my Dr. (an hour) and he was confident he could get a hormone replacement regimen in place that I will be happy with. He was not confident that he'd be able to monitor for ovarian cancer successfully. Apparently there are studies that show the monitoring tools available now are not very effective at detecting it (I did not know this earlier).

I've been praying for something that shows me I'm making (or not making) the right decision. I'd decided to do the tubal ligation and ablation....and then lo and behold, I have a heavy, painful, never ending period and I read an article about Pierce Brosnan's daughter dying at 41 from ovarian cancer when (presumably) she was being monitored. I'm 99% sure I'm having the ovaries removed at this point. With these new facts, would any of you care to weigh in now? I've got a bit of time to decide, but I need to get to a place of peace with this. It's driving me crazy. This would be MUCH easier if I had anything in my history or genetics that was conclusive. Problem is every single bit of it is a big maybe.

ETA: Something that is weighing on my mind is insurance. Right now, I have phenomenal insurance and with my history everything would be covered. I'm nervous about what the future of healthcare holds and am a bit afraid that if I decide to hold off for 10 years or so until menopause, that a psuedo-elective surgery (ovary removal at this point) won't be an option at all. And then there's the possibility that I may not even have insurance in 10 years. It seems a bit unreasonable, but it's certainly crossed my mind.

[Rainbows&Roses]

I had an appointment with my local OB/GYN today after a strange turn of events these past three weeks and it turns out that a hysterectomy is now the recommended course of treatment for me over an ablation and tubal ligation. An ablation will likely stop or reduce my periods, but it won't stop the pain that I've been having these past several weeks. So, hysterectomy it is and I am 100% confident that is the right choice. The question now becomes....take the ovaries or not?!?!?!

I had a long discussion with my Dr. (an hour) and he was confident he could get a hormone replacement regimen in place that I will be happy with. He was not confident that he'd be able to monitor for ovarian cancer successfully. Apparently there are studies that show the monitoring tools available now are not very effective at detecting it (I did not know this earlier).

I've been praying for something that shows me I'm making (or not making) the right decision. I'd decided to do the tubal ligation and ablation....and then lo and behold, I have a heavy, painful, never ending period and I read an article about Pierce Brosnan's daughter dying at 41 from ovarian cancer when (presumably) she was being monitored. I'm 99% sure I'm having the ovaries removed at this point. With these new facts, would any of you care to weigh in now? I've got a bit of time to decide, but I need to get to a place of peace with this. It's driving me crazy. This would be MUCH easier if I had anything in my history or genetics that was conclusive. Problem is every single bit of it is a big maybe.

ETA: Something that is weighing on my mind is insurance. Right now, I have phenomenal insurance and with my history everything would be covered. I'm nervous about what the future of healthcare holds and am a bit afraid that if I decide to hold off for 10 years or so until menopause, that a psuedo-elective surgery (ovary removal at this point) won't be an option at all. And then there's the possibility that I may not even have insurance in 10 years. It seems a bit unreasonable, but it's certainly crossed my mind.

The monitoring tools for ovarian cancer are not very good. The blood test usually doesn't indicate cancer until it is advanced and ultrasound is hit or miss for detecting at an early stage. I would not leave your ovaries if you are taking other organs.

If you follow the kids boutique clothing world, the owner of Matilda Jane was just diagnosed in her 30s with her main symptom being bloating. She is stage IV from the sounds of it. It just seems like it is becoming way too common and every time I think I am being an alarmist about taking them out, I hear about someone else being diagnosed. I am actually in the process of getting a genetics consult and trying to get them to do the Breastnext test for me since my sister and I am came up BRCA negative. That tests for a bunch of genes and may give me further reason to take my ovaries. I appreciate PP mentioning the gyn onco as I read that somewhere else so I guess I need to try and get into one if they will see me. I would prefer to keep my uterus for structural issues and I know someone in almost my exact situation who did just have her ovaries out without needing progesterone potentially because she is on tamoxifen? I need to find out from her exactly why she is able to do that. I know if you don't have periods on tamoxifen due to the drug or being induced into chemopause, they do an ultrasound to measure your uterine lining annually.

Anyway, good luck with your decision. I really hope by the time my dds are older we have either figured out a cure or some better way of monitoring for ovarian cancer so these kind of decisions don't have to be theirs.

[wellyes]

I am glad you got your "sign" just in time, to help you feel peace with your decision. Good luck.