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I realize that none of you are doctors, and I’m not looking for actual medical advice, but rather for help finding options. If you know of an option for me? Something I should look into? I would love to hear about it!
I have a huge fibroid tumor. My uterus is the same size as a seven-month-old pregnancy, and I’ve been hospitalized three times over the past year-and-a-half and gotten 5-10 units of blood transfused each time. So it’s serious, and it needs to be dealt with now.
I do not want a hysterectomy. Instead I want a procedure called Embolization where a Radiologist cuts off the supply of blood to the tumor, and it’s allowed to shrink on it’s own. It’s minimally invasive, and it would allow me to keep my uterus - which is important to me.
The problem is that they have to rule out cancer first, and the test to do that involves inserting a cotton swab into the uterus, and swabbing, and then testing the material for cancer. Sounds simple! Unfortunately the tumor has grown around the entrance to the uterus, and that makes it difficult to get in there with a swab - so they put me completely out, and did the procedure, and the doctor showed me pictures of the inside of my uterus, and she said the tumor was all healthy white tissue, and she saw no signs of cancer - and she was very enthusiastic about the outcome. But when the lab results came back, they said she hadn’t collected enough material - so the procedure would have to be done again. It took almost a year to get on the schedule for the test - since they have to put me out to do it, it’s expensive - and so it was very difficult to make it happen again - but we finally did last week. The problem now is that tumor has grown even more in the last year, and the doctor had even less access, and couldn’t get the camera in this time - and she’s not sure if she was able to collect enough material for the lab to be able to rule out cancer. So we waited almost a year for this test, and we may end up with the exact same results - not enough material collected to rule out cancer.
I have an appointment in June with the radiologist to do the Embolization - but if they can’t rule out cancer before that, the appointment will be cancelled.
So here’s my question! Are there other ways to rule out cancer? Any other kinds of tests? I have an appointment in two weeks to discuss the results of the procedure, and if they tell me they didn’t collect enough material to do the test to rule out cancer - then I want to be able to ask them about other tests. I want to do my research before that meeting, so that I can go in informed, and know what questions to ask.
I know what the standard response will be - just get the hysterectomy and let them cut out the tumor - they don’t need to rule out cancer ahead of time for that option. But I don’t want a hysterectomy, and I’m scheduled for the Embolization, and that’s the plan I want to follow. But we have to rule out cancer first...
So if you know of any other tests to rule out cancer in the uterus? Blood tests? Or some kind of external tests? Any web sites with information on this subject? I just want to do my research ahead of time, and go in informed, so I know what to ask my doctor.
I had a UAE back in 2003 and glad that I did. I had a D&C prior to the embolization because I was bleeding so bad. Everyone tried to talk me into a hysterectomy and was so closed minded to any other type of cure for the fibroids. I had to find a doctor in another state to perform the procedure at that time as it wasn't very well known. My GYN in my own state told me that I didn't qualify for the procedure! I will warn you...it will throw you into early menopause. Good luck.
You only go into early menopause if they remove your ovaries. They can just remove the uterus and you can avoid it. Unless you plan on having kids, it's pointless to keep your uterus and I was told you don't need pap smears anymore once your uterus is removed.
There is no way to know whether a fibroid is cancerous without removing it.
Any testing done on material from the uterine lining will only rule out cancer of the uterine lining, whether done by a biopsy in the office or a formal dilatation and curretage or via hysteroscopy.
If your gynecologist saw nothing at the time of the first procedure to suggest cancer of the uterine lining, I am puzzled as to why you were not allowed to proceed with the embolization at that time.
The risk of cancer in the fibroid itself is very small, but any uterine artery embolization for fibroids will carry a very small risk of embolizing a cancerous fibroid. See here:
By the way, where are you located? Why does it take so long to get such a routine procedure as a hysteroscopy or D & C scheduled? The delays you have had seem extreme.
You only go into early menopause if they remove your ovaries. They can just remove the uterus and you can avoid it. Unless you plan on having kids, it's pointless to keep your uterus and I was told you don't need pap smears anymore once your uterus is removed.
Some, but not all, women who have the embolization procedure develop early ovarian failure afterwards. It may be that there is interference with blood flow to the ovaries.
You only go into early menopause if they remove your ovaries. They can just remove the uterus and you can avoid it. Unless you plan on having kids, it's pointless to keep your uterus and I was told you don't need pap smears anymore once your uterus is removed.
Cupcake, I had my UAE at Brigham & Women's in Boston and early menopause was one of the side effects you could get by having the embolization. I was 43 when I had the procedure. Apparently the blood supply is being cut off when they do the procedure and the veins run in many places. Maybe it was coincidental that I rarely had a period after the fact and then they stopped and I haven't had one in several years! I just double checked with my husband on what they told us prior to the procedure and he too remembered the GYN and the Interventional Radiologist telling us that!
I had a UAE back in 2003 and glad that I did. I had a D&C prior to the embolization because I was bleeding so bad. Everyone tried to talk me into a hysterectomy and was so closed minded to any other type of cure for the fibroids. I had to find a doctor in another state to perform the procedure at that time as it wasn't very well known. My GYN in my own state told me that I didn't qualify for the procedure! I will warn you...it will throw you into early menopause. Good luck.
Thank you for commenting tarragon! My doctor suggested the Embolization right from the start - and it's what I've always wanted - but every time I go into the ER every other doctor I encounter pushes the hysterectomy - it's definitely bucking the norm even now, to go for the Embolization - but I'm lucky that I have a doctor who suggested it.
Considering how minimally invasive the Embolization is compared to a hysterectomy, it's surprising that it's not more widely avaiiable - but I guess that will come in time...
You only go into early menopause if they remove your ovaries. They can just remove the uterus and you can avoid it. Unless you plan on having kids, it's pointless to keep your uterus and I was told you don't need pap smears anymore once your uterus is removed.
Pointless? To keep a part of my body? I just don't see it that way...
If there is no other option, and I have to have the hysterectomy - then I will. But if there are other options, then why not do it the minimally invasive way?
If your gynecologist saw nothing at the time of the first procedure to suggest cancer of the uterine lining, I am puzzled as to why you were not allowed to proceed with the embolization at that time.
I totally agree. My doctor was so certain, based on what she saw, that everything was fine - so it was devastating when they told me that until they could officially rule out cancer, they would not move forward with the Embolization. My doctor wasn't happy, but it's hospital policy.
Quote:
Originally Posted by suzy_q2010
The risk of cancer in the fibroid itself is very small, but any uterine artery embolization for fibroids will carry a very small risk of embolizing a cancerous fibroid. See here:
By the way, where are you located? Why does it take so long to get such a routine procedure as a hysteroscopy or D & C scheduled? The delays you have had seem extreme.
I'm in California, and it's beyond frustrating that it's taken so long, but this hospital is so busy, and the test is expensive, so they tried every tactic to get out of having to do it again. They really would prefer to just give me a hysterectomy, which doesn't require the tests first - so it's cheaper.
Cupcake, I had my UAE at Brigham & Women's in Boston and early menopause was one of the side effects you could get by having the embolization. I was 43 when I had the procedure. Apparently the blood supply is being cut off when they do the procedure and the veins run in many places. Maybe it was coincidental that I rarely had a period after the fact and then they stopped and I haven't had one in several years! I just double checked with my husband on what they told us prior to the procedure and he too remembered the GYN and the Interventional Radiologist telling us that!
That's not good news. I have a baseball size fibroid and I am a little bothered by it. I do not want to go into early menopause.
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