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Need help with a few questions.... Need help with a few questions....

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Unread 12-26-2001, 09:46 AM
Need help with a few questions....

Hello to all. Hope everyone had a great Christmas. I have not posted on this site in over a year now. Used to go by the name angelgirlskm. My question is now about my sister. I knew that you all would be able to help, since you all helped when I had my hyst in 2000, and ovaries out in 2001. My sister is 23 years old. Hasn't had a period in years. Docs all said that she was fine. Anyway to jump right into it. She was just DX with leiomyoma, which I looked up and are fibroids. And leiomyosarcoma. Some type of cancer tumor. When they got the portion to test, is was located between the bladder and the uterus. They are under the impression that it is bladder cancer. Once I saw the fibroids, I realized it is the uterus. Her docs are wanting to do a partial hyster, within the next few weeks with no chemo, or radiation. My question is, what info should I be giving my sister, is a hyster the only choice, and what is leiomyosarcomia exactly. And which part is it effecting. Doctors dont seem to know. All they are saying is that they are taking the uterus,and half the bladder. I do not want my sister to have the hyster. I had one at 24 and life has not been the same since, however I dont want her to die from cancer either. Any info or advice anyone could offer would be great. Thank you all so very much.

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Unread 12-26-2001, 10:04 AM
Need help with a few questions....


Your sister is so fortunate to have a caring sibling! I am not a doctor, so other than knowing that a leiomyasarcoma is a fairly rare form of uterine cancer, I haven't a clue. I do know however, that all cancer diagnosis and treatment decisions are reallt serious! And for such a young woman!

I would strongly suggest (and suspect the other sisters will too) that your sister get an opinion from a gynocological oncologist. This is a gyn who specializes in cancer dx and treatment. If you search the boards, you will fins websites that have listings of all the certified gyn oncologist. At the very least she needs a second opinion. Having a hyst at your sister's age is a very serious matter, and she needs to be absolutely confident that it is the necessary thing to do.

All the best to you and your sister,

Unread 12-26-2001, 10:11 AM
Need help with a few questions....

Hi Laura,
I am very sorry to hear that your sister is going through this, and what a wonderful sister you are to want to help as best you can.

I am not familiar with fibroids, and hopefully others will be along who are more familiar, but I did want to tell you that many times the doctors need to get in doing the surgery before they know what they are dealing with. I am wondering if your sister has been seen by an oncologist?

My family doctor originally thought my bowel was the origin of my problems, but after seeing a gyn and having an ultrasound and CT scan it turned out that the tumor on my ovary was actually putting pressure on my bowel, and the bowel was not involved at all. I was sent to speicalist who discussed my case with an oncologist and then they had a very good idea of what we were dealing with. My oncologist attended the surgery with my gyn.

I am not sure where you researched for your information, but as well as are very good sites for research.

I know that sometimes we hope and expect doctors to have the answers but sometimes they really do need to get in to see what is going on.
My sister in law is a prime example of this. She was operated on for an ovarian cyst, and when they got in they realized that her problems originated in the bowel, and had spread to the ovary, which is very rare they said. She had the same oncologist as I did, and that just shows how some things are very obvious to them in the scans and tests as mine was, and other things they really don't know about until they are doing the surgery.

I am sorry to hear you have had problems since your own hysterectomy at such a young at. It may be that the doctors feel this is necessary to do if they are in fact dealing with cancer in the area though. They seem to know that by doing this she will not require rad/or chemo, which is always very good news. Treatments can be very hard to go through, although I am very grateful for the chemo I had to endure to get my health back.

I will keep your sister in my prayers, and please keep us posted on how she is doing Laura.

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Unread 12-26-2001, 10:29 AM
Need help with a few questions....

I am having a tah/bso on Friday for a possible leiomyosarcoma. They are very rare, but can be very deadly. Your sister should definitely be getting a second opinion from an gynecologic oncologist. I'm surprised her ob/gyn wouldn't have sent her to one yet. My ob/gyn didn't even want to do the surgery once cancer became a possibility and set me up with a top gyn oncologist at Yale. She told me that while she was perfectly capable of doing the surgery herself and that the surgical department at our local hospital (Norwalk) was very good that Norwalk's pathology department was not as good as Yale's and that it is the pathology department that matters.

You are in PA. Does your sister live near you? I don't know PA too well, but from my research have gathered that University of Pennsylvania Hospital(in Philadelphia) has an excellent reputation. I did a search on hospital rankings which led me to an article at US News and World Reports with this info. If your sister is not close to this hospital, you may find another hospital on the list that is close to her. Or you might just want to take the drive.

How exactly was your sister diagnosed with a leiomyosarcoma? It is pretty difficult to tell with certainty until it is looked at and tested by pathology. Otherwise it might just be a fibroid. Also, from what I've read, most leiomyosarcoma would have to be treated with a tah/bso otherwise it can spread to other pelvic organs.

I'm concerned for your sister because it does not sound like she is getting optimum medical care for a very serious condition. She is young and if this is just a fibroid problem, there may be other options besides hysterectomy. If it is truly a cancer or a suspected cancer, they may not be doing enough for the problem. Plus, a gynecologic oncologist will know what treatment if any your sister will need beyond the initial surgery. I am also concerned that your sisters lack of periods set off so few bells and whistles. While I've known people with unpredictible menstruation, they've always been put on the pill or something to help establish regular periods.

I hope your sister is alright.
Unread 12-26-2001, 10:42 AM
Need help with a few questions....

I completely agree with 3ravens. My suspected diagnosis was uterine sarcoma in the form of lieomyosarcoma. It turned out to be benign tumors (fibroids) but they really can't give you a final diagnosis until they do the pathology. I also agree that your sister needs to see a gyn oncologist. My gyn immediately sent me to one and I am so glad. This is a very rare form of cancer and must be treated ASAP. So get your sister to an oncologist and if they suspect this form of cancer they will be scheduling her for a hysterectomy quickly. I hope your sister's situation turns out as well as mine. s You are a good sister to try and find information. You can also find information by doing a search on webmd or other reputable medical websites.
Unread 12-26-2001, 05:00 PM
A definite 2nd and 3rd opinion is the way to go!!!

I am a medical laboratory technician who works in cancer research. Please make sure your sister gets three opinions and make sure an oncologist who deals specifically in that type of carcinoma checks her out. It is rare that fibroids turn cancerous, but it does happen.
Is there a history of cancer of the uterus in your family? If so, please take quick action. At her age cancer moves very fast. I do not want to scare you but tomorrow get her to see someone who knows what they are doing. The University of Pennsylvania has the best department of oncologists for carcinoma diagnosis.
Please let us know what is happening with her. We are here to help you.

Please take care of yourself through this trying time.

Unread 12-26-2001, 05:49 PM
Thank you all so much

Hello, and thank you all so much for your help. Well, I will explain a little further how this all came about. Well it started about 6 months ago. She got horrible pains, and also started to have a very large amount of blood when she had to urinate. Well the docs looked into her bladder and found that it was not draining all the way. So they did ultrasounds and found that she had several ovary cysts, and something that appeared to be on her bladder. So they went in there and took a chunk of it out. This was about 4 months ago. Well they couldn't determine what exactly it was. Well, I sent her to my gyn which did my hyster. He refered her out to another doc because she was having the same type tumors, growth, pain, etc that I had been having prior to hyst. He felt that maybe another doc should do it since I was taking up alot of his time still. So she went to this other doc and they did the surgery to test it. After a month that is when they told her that they could not determine what it is. ( Funny same thing they told me at my hyster at 24, still have no clue what it is)
Anyway, they sent a copy of pathology report and another sample to the airforce. Well, 2 wks ago air force came back and said that the sample they got was the middle of the cell. That the head and tail were missing. And said that it was made up of two things. One being leiomyoma, and the other being leiomyosarcoma. That is what brings me here. The docs are saying that it is her bladder that has the cancer not the uterus. She is seeing an oncologist. This is also her 7th doc that cant figure this out. In the sample there was also lung cells. Have no clue what that is from. She does have polyps in her lungs that they found on pre op xray. Still haven't looked into that. I guess I am writing you all for two reasons. One being that I really am scared for my sister. Scared of the cancer and scared of her having the hyst. And the second reason being that the tumor, that they got the sample from was the same exact thing I had. Infact was told a few months ago that I have it back. To just leave it until I cannot take the pain anymore. Which I am at that point where the pain is too much again. My tumors started on the bladder and wrapped all over in there. My sisters tumor is believed to have started on the bladder also. Both of us got our medical attention thru the same docs in Las Vegas, Nv. ( I just moved to PA, my oldest daughter had her 13th major surgery) I am so scared, and so confused. What does all this mean, and is she going to be ok? In four months time she has lost over 50 pounds, and is still going. I guess what I want to know is, is this cancer terminal? I have read several things that if caught in time no, and then again I have read that it is. Please help me sort all this out so I can help my sister. She means the world to me, and is in denial big time about all this. She thinks it is no big deal, and isn't seeing her doc on regular visits. In all this has been going on for 6-7 months. And I worry that we are passing up the time to do something.

I am very sorry that this post is so long. Thank you all for letting me vent.

Unread 12-26-2001, 06:14 PM
Need help with a few questions....

Regarding whether it is terminal, it all depends on the sarcoma. I know one thing for sure. If it is a sarcoma, ignoring it will not make it go away. It will only worsen the situation.

Please urge your sister to see a gynecologic oncologist and to follow their advice quickly. It sounds like she will probably need a hysterectomy and possibly further treatment.

If your sister is in Las Vegas, can she get over to LA for an opinion. I believe UCLA has a very good women's health program. There might be other hospitals in LA or San Francisco that she can investigate. Or, have her look into hospitals in Arizona. I think one of the Arizona hospitals made the top hospital lists in the US News and World Reports that I referenced earlier.

In the meantime, I hope you have sought some additional medical opinions now that you are in PA. Best of luck to you and your sister.
Unread 12-26-2001, 06:42 PM

Dear Laura,
You are indeed a wonderful, loving person to try to find information for your sister. I have a daughter who will be 24 soon and it is such a young age!!!! But let me tell you a little about myself. I was scheduled for TAH on 5/30/01 to remove a pudunculated fibroid and the uterus (I'm 48 and it was the best solution for me at my age). I was to keep my ovaries. Anyway, all the pre-tests and scans fooled everyone and my pedunculated fibroid was really a leiomyosarcoma not connected to my uterus!!!! It was imbedded in the lining of the small intestine, to the right of my belly button line. I was told the tumor was well localized but the cells were the nasty aggressive type! However, no radiation or chemo was recommended . As I understand it, if they get the whole tumor, no radiation is needed. If they can't get the whole tumor, radiation may be indicated. The chem that is offered does not have a very good track record and is used as a last resort (This is my own interpretation of what I have found in my research). I was told that if they used chemo on me that they would just be poisoning healthy person as they do not know if it has spread to other organs. I had a full body PET scan done in October and I am still clear!! Yeah!!!

To answer some of your questions...leiomyo means smooth muscle; oma means benign tumor (yes, that's a fibroid), Leiomyosarcoma is a smooth muscle maligancy (cancer). Sarcomas are very rare cancers. They don't have a lot of data on them. Eventhough my cancer was not directly connected to my uterus....everything was removed, TAH/BSO. Now I will be monitored for the next 5 years. Statistics, unfortunately are not good. But for me, attitude is everything. It sounds like your sister is coping by denying and maybe this is what she has to do for herself. I can see that you are trying to get her to take action quickly and this is important. Will you be helping her through this ? I am concerned with the information that you said about her having "polyps" showing up on her chest x-ray. And the connection of the pathologists finding lung cells in the tissue taken from the bladder is something you really need to speak to an oncologist who specializes in sarcomas.

I don't know if any of this has helped or not. Cancer is a scary thing...ask anyone here. You are terrific to be standing by your sister!!! Let me know if I can answer any other questions for you.

Unread 12-28-2001, 04:26 AM
Margie, and everyone else who has helped me a great deal...

Thank you all for replying to my questions. I talked with my sister yesterday. She says that she is seeing an oncologist. But hasn't seen her in over a month. That they wanted to get all the info before doing anything. She has had a severe cold for the past 6 wks that they cannot get rid of, and has lost even more weight. She sounds just awful. But she is holding on to hope. I told her that I am here for her, and asked if she was able to use a friends computer so she could chat with all you wonderful people. I know that this site was a great help to me when I had my hyst in 2000, and then ovaries out 6 months later. She is going to try to get online so that she can post, and chat with you all. I am going to be there as much as she needs me thru all this. She doesn't have a phone, and I just moved to PA, because my oldest daughter had to have her 13th major surgery, (another long story). I feel so badly that I had to move during this rough and painful time for her. I guess you could say I feel a little guilty for not being there in person. But I am in spirit and will do everything I can from this side to make sure that she will be ok thru it all. I will keep you all updated on the findings. I know that she will require a hyst, and she is sad, but doing ok about it all. Thank you all so much for all of your help. Talk with you all real soon.


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