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

[Binkandabee]

I know over the past several weeks, I've posted on here alot. This one is likely to be a long one, so bear with me as I really need some well thought out advice here.

A bit about me, in case you are unaware. I am 36 years old and was diagnosed with breast cancer in September of 2012, when I was 35. Because of the type of cancer I had, mastectomy was my only treatment option. Because of my age and family history, I chose to do a double mastectomy. I did not require chemotherapy, radiation, or a hormone surpressing regime since my cancer was not invasive. My cancer, however, was hormone receptor positive for both estrogen and progesterone, meaning it was fueled by those hormones.

I had the breast cancer gene test done and mine came back as not having the two known mutations associated with breast cancer, but my gene isn't normal, it's what is known as a "variant". Basically that means the gene isn't normal, but there isn't enough data yet to make a positive determination that my particular variant is associated with an increased risk of breast cancer. Basically nobody knows what it means.

DH and I are finished having children and I've been trying my hardest to come up with a permanent form of birth control. I haven't taken birth control pills since my diagnosis (due to the hormones) and I am completely stressed out about getting pregnant. Not only that, it's possible (but nobody knows for sure) that I may be at an increased risk for ovarian and/or uterine cancer.

I am having a reconstruction revision surgery in September and have been trying to figure out if I want to do a permanent birth control/ovarian cancer risk reduction surgery in conjunction with it.

I spoke to my breast surgeon, consulted with my local obgyn, and consulted over the phone with my obgyn in New Orleans.

Here's what my options are according to them:

1. Tubal ligation with ablation. This is the least invasive of my options. Surgery is straightforward, recovery is minimal. My ovaries and uterus are left intact and there is no hormone disruption. Is a permanent birth control only, does nothing to reduce risk of any future cancer.

2. Partial Hysterectomy. Removal of the uterus only, leaves ovaries in tact. Reduces risk of uterine cancer, but not ovarian cancer. Is a slight possibility that ovaries would fail after this and I would be in menopause.

3. Total hysterectomy. Removal of everything, uterus, ovaries and tubes. Recovery is a few weeks. Originally I had thought it was inadvisable that I have hormone replacement therapy, but my docs seem to agree that a small dose of estrogen (something less that what my body would make on its own) is fine. ETA: Technically it isn't a total hysterectomy, but a hysterectomy (removing uterus) plus a oophorectomy (removing ovaries).

I'm going to be blunt here and the ONLY reason I hesitate about either the partial hysterectomy or the total is the potential negative effect on my sex drive. I have no issues with sex drive whatsoever and I don't want that to change.

My Docs are in agreement that any of these options are a reasonable course of treatment considering my history and genetic results.

Here's where I'm at, I think...this seems to change depending on the day. I am leaning towards doing just the tubal and ablation and putting off any type of hysterectomy. My thinking is that if it's reasonable now, it will be reasonable in 10-15 years as well. The problem with that thinking is by then it may be too late And if it were...I would feel AWFUL about not having done this when I had the chance.

So, if you've made it this far, any advice? What would you do if you were me? What would you tell your daughter to do?

[BabyBearsMom]

First, I'm so sorry that you are going through this.

Have your doctor's discussed how they would monitor you for uterine and ovarian cancer if you don't have the hysterectomy? Could they just test you say every 6 months and then if anything looks off just do the surgery then?

I understand not wanting to impact your sex drive. It is an important part of a marriage and your own mental well being.

If it were me, I would probably do the full hysterectomy because I am extremely risk averse and I wouldn't want to worry about it later. But, that is a very personal decision, and I wouldn't judge anyone who chose the other two options or consider them bad decisions.

[wellyes]

What a tough set of choices.


I think in your shoes, I would take option 3. Like the PP, I am risk averse. I'd rather feel a sense of control in finding ways to deal with the effects of a hysterectomy versus not be able to control what's happening in my body.

[almostmom]

So sorry you have to make this decision. It must be so hard.

Just another question - If you do the tubal ligation, what sort of monitoring will they be able to do to keep an eye on any occurrance of ovarian or uterine cancers? I don't know what the survival rate is for these if the cancer is caught early. If it is pretty good, and you can have regular monitoring, then I would go with the tubal. But my instinct is this is not the case, that these are pretty aggressive cancers. On another note, I have seen my sex drive fall (for no good reason) and it is very frustrating and challenging.

I think if it was me, I might do the tubal right now, and think about the other surgery for awhile. Maybe you don't wait 5 or 10 or 15 years. But maybe in a year you'll feel like it is too scary to now know and you want to make sure you minimize your risk. Or maybe you feel calmer without the risk of pregnancy in your life, and you feel comfortable with the monitoring that your doc is doing. Or more studies come out about your gene that say the risk for those cancers is not as high.

Obviously I can't tell you what to do. But that is the way I might think about it.

Good luck--

[TwinFoxes]

What a tough decision. I also am curious how would they monitor you if you choose just the tubal ligation. That would play a big part in my decision.

I have to say, I would be concerned about sex too. It's actually one of my first thoughts reading your post. Have the doctors told you what you can expect in terms of negative effects on your sex drive?

I don't know if I could have a hysterectomy if there was just a chance I was at higher risk for ovarian/uterine. If I definitely was at higher risk, that's a different case.

[mommylamb]

First, I'm so sorry that you are going through this.

Have your doctor's discussed how they would monitor you for uterine and ovarian cancer if you don't have the hysterectomy? Could they just test you say every 6 months and then if anything looks off just do the surgery then?

I understand not wanting to impact your sex drive. It is an important part of a marriage and your own mental well being.

If it were me, I would probably do the full hysterectomy because I am extremely risk averse and I wouldn't want to worry about it later. But, that is a very personal decision, and I wouldn't judge anyone who chose the other two options or consider them bad decisions.

to all of it. OP, I am so sorry you have to deal with this. These are not choices anyone wants to make.

If you decide that you want birth control, but not the hysterectomy, what about having your DH get a V so that you don't have to go through surgery again?

[Snow mom]

to all of it. OP, I am so sorry you have to deal with this. These are not choices anyone wants to make.

If you decide that you want birth control, but not the hysterectomy, what about having your DH get a V so that you don't have to go through surgery again?

Is there a reason a V is off the table? It seems like you've been through a lot and your DH could take care of the pregnancy worry here while you determine more about the cancer risk and monitoring. I'd expect my DH to have a V over me doing a tubal in your circumstances.

[lizzywednesday]

IIRC from other threads about this, the OP's DH has had complications with even simple procedures in the past and that makes it more stressful for them to consider anything for him at this time.

OP, I agree with BabyBearsMom about wanting to know how your docs will monitor your ovarian/uterine cancer risk/status if they do not do the hysterectomy.

Also, due to your type of cancer being hormone-receptive, I would be fairly wary of leaving organs that do produce hormones (i.e. - ovaries) for fear that their presence would exacerbate an already delicate balance in my recovering body, much like the "of course they're fake; the real ones tried to kill me!" tees that some tongue-in-cheek Survivors wear at many of the breast cancer charity events I've participated in.

If it were me, I'd have more questions for my doctors, especially those relating to hormone receptive tumors and why they feel it's OK for me to keep my ovaries.

One of my Survivor friends even avoids phytoestrogens, like the ones found in soy, because her cancer was also hormone-receptive, so I don't think it's necessarily something that should be gone into lightly, especially if it means I'm still maintaining some element of risk.

I also would like to know if there were support networks in the Young Survivors Coalition (or other groups - Y Me is another, I think) that deal with this decision - and how to handle the conjugal aspect of a hysterectomy if you ultimately decide that's your best option.

[Binkandabee]

DH is a medical disaster. He's never had anything done that hasn't had complications. I would benefit in other ways as well because my periods are long and I have several days where they are extremely heavy, almost unbearably heavy. So, I'd likely be doing an ablation at the very least anyway.

I am going to call my Dr. with some additional questions and one will be the monitoring for ovarian and uterine cancer. From what I understand now, at least for ovarian cancer, it is hard to detect as it presents itself with very common symptoms (bloating, frequent urination, etc.) I'm honestly not sure what the routine monitoring would be, but I will definitely ask about that. I also need to ask what the long term side effects of menopause at such a young age is. I believe there are bone density issues that could crop up later on in life.

About the sex drive...some additional info. I have zero feeling in my breasts any longer. They are 100% numb all over, which is completely normal for mastectomy patients. I really hate to take the risk that our sex life will be further impacted, but then again, I would hate to die of ovarian cancer. I could really use a crystal ball about now!

[Percycat]

I have zero feeling in my breasts any longer. They are 100% numb all over, which is completely normal for mastectomy patients.

Thank you for sharing your very personal story. I have never thought about this aspect of breast cancer. Cancer robs so much -- even from survivors.

Saturday, I am running in my first 5K - the Komen Race for a Cure. I am running partly in honor of a few family and friends who have fought cancer. I will remember you too.

I'm glad to hear that you are cancer free. I hope you get good advice from your doctors and are able to live a happy and healthy life.