Hysterectomy for heavy bleeding/anemia after Breast Cancer

MamaShift · October 2018

Hello everyone!

I'm truly in need of some advice. It's a long story. Hopefully, I can be concise.

I am 50 years old, 51 in a few months.

I've struggled with anemia since the first days after chemo back in 2008. I did not have a period for 18 months following chemo. I've had my numbers up only once since then, in 2015, when I did IV iron infusions. My numbers started to drop again fairly quickly and now they are 8 for hgb, 10 for iron and 11 ferritin. I'm microcytic as well.

I have been bleeding most of the month (I get about 2 days period-free each month) since around December '17. At the same time, I've had periods of not bleeding (bad phrasing, I know!) that have lasted up to six months a couple of times in the past two to three years. I saw gyno in January and March of this year. Did vaginal u/s, no fibroids or polyps detected (I've had surgery for both), and now just did another u/s yesterday: again no fibroids/polyps. I have extreme leg pain at night during what could be considered the last 5 days of bleeding (the ones right before those lovely two days that I get).

In addition, I have struggled mightily with neurological pain in my left big to, which occurs only at night and only at rest. When I would drop off to slee, I would be jolted awake by a jerk and a pain similar to someone manually breaking my toe. I had surgery for a herniated disc two years ago so when I tell you the pain was an 8 you can believe me 'cause I know pain. I rather thought this had to do with my disc and possible nerve damage but my neurologist has diagnosed Restless Leg Syndrome secondary to anemia.

I am scheduled for an iron infusion on Monday.

The question is: gyno and I have scheduled a hysterectomy/oophorectomy for mid-November. It seems to me that the other methods of stemming this bleeding and getting my anemia and RLS under control (I absolutely MUST get off the pregabalin -- or Lyrica -- that I am taking for the RLS pain because it makes me feel truly horrible and causes me to sleep for 12 hours straight, meaning I can't get up to see off my youngest daughter before school) either won't be effective long-term (D&C) or aren't warranted for a former breast cancer patient (Mirena spiral, hormones, etc.).

I've added the oophorectomy because I was always meant to have one anyway.

The big question for me is: Should I just wait this out as I'm nearly menopausal? Testing in March showed FSH was 23.8 and E2 (estradiol) was 118, so menopause isn't necessarily coming anytime soon as far as I can tell.

I see the beneft of hysto/oophro in terms of: a) improving my quality of life greatly b) preventing certain repro cancers c) limiting permanent neuro damage in my foot (already have loss of sensation and tingling that will probs be permanent; I'm hoping toe pain won't be -- althougggh, this should all get better once I've had the iron infusion(s), though I do need to treat the primary cause.

But I'm concerned about: a) the finances (though we have excellent insurance) of doing this and going into menopause a few months later b) the possible side effects, like urinary incontinence, surgical menopause, etc.

Can anyone give advice or even just a "I would do it/not do it?" Thanks everyone!

Lisey · October 2018

if you do a search, I just posted about this a few days ago and there's a lot of responses. I'll try to find you a link.

https://community.breastcancer.org/forum/6/topics/867493?page=1

NotVeryBrave · October 2018

Have you tried a D&C? If not - it's possible that it could help by completely removing the lining and then you could see what happens next. It would be less invasive and less expensive with minimal recovery.

Why were you planning to remove the ovaries? That will bring on immediate menopause. Also - have you ever been on Tamoxifen? That can cause problems with the uterine lining. Perhaps the issue is that it isn't completely sloughing off?

You are at the average age for menopause. Do you have any symptoms of it like hot flashes? Your blood levels don't look like it but can vary during cycles.

I give you credit for going along like this for this long. Anemia can be serious and certainly something needs to be done. This is no way to live.

MamaShift · October 2018

Thanks for the link, Lisey! Going over to check it out in a moment.

NotVeryBrave, removing the ovaries was recommended to me back then. I had bc at the very same moment my mother did, though admittedly I haven't done the genetic testing as it's free for Austrian citizens but not for other residents who aren't subscribed to the national health care system (I have private insurance) and quite expensive otherwise.

It's a long story about the Tamoxifen, but basically no, I wasn't on it as it provoked my heart (premature ventricular contracttions -- or PVCs; I have approx 12,000/24hrs of them) and I was having to drive my girls to school at the time, so it was dangerous. I also had pretty much zero follow-up after chemo because I was living in a country with crap healthcare and when I showed up after having gone through chemo in the States (literally two days after finishing chemo because I had promised my eldest I would be there for her on Hallowe'en) and did some bloodwork, the doc at the only decent clinic in town literally said, "I don't know what to do with you."

No, I don't have any hot flashes or any indication at the moment that I might be near menopause -- unless bleeding constantly and passing fist-sized clots (sorry but I guess TMI doesn't really exist on this board) is any indication of being near menopause.

Yes, I do tend to "go this long" because I truly dislike doctors at this point in my life. But, to defend myself, I saw my back surgeon almost immediately about the toe pain, who chalked it up to my feet no longer having any padding and to a slightly 'hallux valgus" big toe and prescribed insoles, which delayed me about three weeks. Then I was at our house in France and saw who I could see in the summer there. This doc recognized the neuro nature of the pain and put me on the Lyrica but was limited in what he could do as I wasn't his patient. The Lyrica got me through dropping off daughter at college in the US. Then I saw my neuro here, a private practice but working with the public hospital. So had testing at public hospital; took two weeks to get any result. Etc., etc. The symptoms of the anemia and the extreme blood loss really picked up over the summer in France -- things I wouldn't notice as much here in an apartment became much, much more noticeable in a 3-story house!

Thanks for responding!

MamaShift · October 2018

Thanks Lisey! Just read through your thread. I did search hysterectomy but didn't come up with your thread -- although it looks like I could have browsed through this sub-forum first.

NotVeryBrave · October 2018

It sounds very complicated to manage your health care concerns in various countries with the added insurance and cost considerations!

You probably really need one good physician who can oversee your care on many fronts. Do you have a PCP?

I'm sorry that you've had a hard time.

MamaShift · October 2018

Thank you NotVeryBrave! It is complicated -- even more so because my youngest has an autoimmune disorder. I do have a PCP whom I thought very much I would like but I don't really so far. Was just there last week with my daughter who had a groin injury. I said, "You know, every time she has a pain like this my mind goes to rheumatoid arthritis." His reponse? "RA doesn't just come on like that!" Yes, I know, believe it or not. If I said that, I have my reasons, right?? Argh. Anyway, I've been shoving my blood lab results in his face for a year now. On the other hand, I absolutely adore my cardiologist. Why can't he be a PCP??

WC3 · October 2018

Mamashift:

The pain could be various things. One of my aunts had a pain in her leg and it was a deep vein thrombosis. Another one if my aunts had a pain in her legs that she though was from back problems pinching her nerves and it turned out to be MS.

Low iron can cause RLS but as far as I understand, RLS induces a feeling of one needing to move their legs, not an unanticipated jolt, I think that is more in line with myoclonus.

For myoclonus, what sometimes helps is going to bed before becoming excessively tired and also a small dose of melatonin...like 2.5mg.

As far surgery goes, I guess it comes down to how long you are willing to wait until natural menopause.

MamaShift · October 2018

Hi WC3! Thanks for your input! The dx of RLS is from my neurologist after conducting a physical, 4 pages worth of blood tests and doing a nerve conduction test. His reasoning is the pain occurs only at night and is relieved with movement. I was quite taken aback by the dx myself. I have found some literature, though, that would support this kind of jolt or pain in the toe being in line with an RLS dx. I'm still not convinced, though, I must say.

I will check out the myoclonus as I hadn't ever heard of it -- and am open to any other possible cause.

I agree that the hysterectomy is down to how long I can wait. I can't wait, of course! I'm the type of woman who would have had one ten years ago. :-)) So I'm not sure I should base my decision on that!

MamaShift · October 2018

So what was known as 'sleep myoclonus," which fits perfectly in terms of when & how the jolt & pain occur, is now known as PLMD (periodic limb movement disorder), which is still a disorder that falls under the umbrella of RLS and is still caused by, amongst other things, iron deficiency. We've ruled out all the other causes and pinpointed ID as the cause. I think instead of trying to pinpoint the dx (the main point being, probably, that the anti-seizure med I take does work quite well, though I hate its effects), I'm going to go with the idea that whatever it is, it's caused by iron deficiency, so I need to address the primary reason for the ID, which is excessive menstrual bleeding.

Hysterectomy for heavy bleeding/anemia after Breast Cancer

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