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intravascular leiomyomatosis intravascular leiomyomatosis

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  #1  
Unread 12-24-2011, 04:28 PM
intravascular leiomyomatosis

Early 40's/no pregnancies:

I have intravascular leiomyomatosis. A supposedly rare form of myoma or fibroid that in my case migrated up my IVC and into the right heart. I had radical surgery to remove the tumour several years ago but the pelvic tumours were not removed and it grew back. At present No further surgery, especially not heart surgery. Instead treated with total oestrogen deprivation, Zolodex and the aromotase inhibitor Femara, which I think is key. This combo has led to RADICAL shrinkage. Still between a rock and a hard place. Side effects from the drugs are tough, especially chronic insomnia but the alternative was re-open heart surgery! This condition is rare but not as rare as the surgeons think. Please explore all options. It MAY be that you can avoid radical surgery, esp open heart surgery, by taking hormone suppressing drugs, which you would almost certainly have to take in any event given that oestrogen is made in fat and adrenals and not just the ovaries. Make sure you are under an oncologist too! This thing can kill because although histologically benign it is mechanically malignant and left untreated can get into heart, lungs, liver etc. However in my case it is clearly hormone related. The best treatment MAY not be bypass surgery. Whatever you decide. A diagnosis of intravascular leiomyomatosis need not be the end of your world. Good luck & feel free to get in touch.
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  #2  
Unread 01-08-2012, 04:22 PM
Re: intravascular leiomyomatosis

Hi Allison,
I was also diagnosed with intravascular leiomyomatosis. I had a total hysterectomy on 12/12/11. Going in they did not know the diagnosis but the plan was to keep my ovaries unless it seems dangerous to do so. While in surgery they found the IL and so took the ovaries so as to remove estrogen from my body and prevent further growth. Once the biopsy results were in they found that it did not yet go to my ovaries so my heart will probably be okay, but I need to have a scan of my heart to be sure. I do have to avoid estrogen replacement for the rest of my life because apparently the tumors could grow back in different parts of my body.
There is so little information about this on the internet and every day I have new questions. Did you have a hysterectomy and your fibroids grew back anyway? Even though I have no ovaries anymore is there still estrogen in my body? I was confused what the drugs you are taking do. Is there any place on the internet that you found good information? Is there anything I can do to help you? (Probably not since I'm newer to this than you are, but if I could help let me know.)
Amy
  #3  
Unread 01-08-2012, 04:56 PM
intravascular leiomyomatosis

Hi June,

Really great to hear from someone else with IL.

I have not had a hysterectomy. I take hormone suppressing drugs.

Yes, oestrogen is also made in the adrenals and fat cells.

You didn't say what drugs you're on if any.

You may decide to insist on having an oncologist's input or at least establish that your clinicians have considered the need for you to take an aromotase inhibitor (mops up the oestrogen produced in the adrenals etc).

You may also want to ask for endocrinology input or similar to discuss bone health, osteoporosis in particular. A side effect of no ovaries and or hormone suppressing treatment is osteoporosis. Lots you can do to limit this such as calcium supplementation with vit D. You can also ask for regular Dexa scans to check your bone density.

Don't be afraid to ask questions and get well considered answers. Above all, get regular follow up. Get them to check your heart (cardiac MRI is the best imaging) and your lungs (ct is best for this).

The kind of experts that I think are needed are oncologists, perhaps with expertise in sarcoma and or gynaeoncology.

This condition is not as rare as the medics think. The information is there if they look for it. You may have to encourage them!

Best wishes


QUOTE=june221967;3657521]Hi Allison,
I was also diagnosed with intravascular leiomyomatosis. I had a total hysterectomy on 12/12/11. Going in they did not know the diagnosis but the plan was to keep my ovaries unless it seems dangerous to do so. While in surgery they found the IL and so took the ovaries so as to remove estrogen from my body and prevent further growth. Once the biopsy results were in they found that it did not yet go to my ovaries so my heart will probably be okay, but I need to have a scan of my heart to be sure. I do have to avoid estrogen replacement for the rest of my life because apparently the tumors could grow back in different parts of my body.
There is so little information about this on the internet and every day I have new questions. Did you have a hysterectomy and your fibroids grew back anyway? Even though I have no ovaries anymore is there still estrogen in my body? I was confused what the drugs you are taking do. Is there any place on the internet that you found good information? Is there anything I can do to help you? (Probably not since I'm newer to this than you are, but if I could help let me know.)
Amy[/quote]
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  #4  
Unread 01-08-2012, 05:12 PM
Re: intravascular leiomyomatosis

Thank you for this information. My surgeon was a gyno-oncologist and he ordered heart scans but I just haven't made the appointment yet. He recommended waiting until I felt a little better. I'm going to call about it this week. He didn't indicate that I needed follow up with him, but he will be following up with me after the scans so I can ask then. I am not on any drugs at the moment. I am concerned about osteoporosis and other side affects from not having ovaries. I've started to take calcium and I am going to follow up with a primary care doctor soon. I am actually changing primary care doctors because I am not impressed with mine at all. I basically had to orchestrate the entire diagnosis until I got to this surgeon because I knew something was wrong but couldn't make him care. The surgeon gave me the names of two doctors that he likes so I'm starting there first.
Thank you for all the information. I really wasn't worrying too much about it, but I can see there is a lot to consider. I appreciate knowing the right questions to ask. Thanks.
Also, I don't know if you know this, but if estrogen is made by fat cells I'm guess maintaining proper weight is pretty important? Have you heard anything about that? I guess this is a good strategy for anything, but I'm wondering if it is needed more so now. I'm doing my best always!
Have a great week. Thank you for sharing. While I don't wish this on anyone it's nice to hear from somebody who has been diagnosed too. Best of health to you, Allison.
  #5  
Unread 01-08-2012, 05:27 PM
Re: intravascular leiomyomatosis

Hey June, you are well ahead of the game. Don't be afraid of the heart scan and only do it when you feel strong enough. The good news of my story, which is why I shared is that someone with this in their heart (not you) may want to try hormone suppressing drugs only. I am fat and need to lose weight! Yes, it's another motivator. You're doing great!
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