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What You Should Know About Fibroids that I Didn't What You Should Know About Fibroids that I Didn't

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  #1  
Unread 07-13-2003, 03:41 PM
What You Should Know About Fibroids that I Didn't

This post is not intended to scare anyone who has been diagnosed with fibroids. I just want to raise the level of awareness among hystersisters.

I was diagnosed with a large fibroid (12cm) in November of 2002. Everything that I read including what the doctor told me and information from the American Cancer Society indicated that fibroids are benign. That was in part why I waited from November until May to have it removed. I had no irregular cycles or heavy bleeding. During my follow-up visit to my doctor in March, she urged me to strongly consider a TAH, although I don't think that she had an idea that the fibroid was malignant. I went in for a TAH/BSO on May 14th thinking that the fibroid would be removed, I would go home and recuperate and that would be that.

My pathology report came back positive for cancer in the fibroid. This is called leiomyosarcoma. Apparently, it is very rare. The cure is a total hysterectomy. Fortunately in my case (and I thank God everyday) the malignant cells were well encapsulated in the fibroid and had not spread outside the tumor. I will be closely monitored by my gyn/onc every three months. I have turned into a "cancerhead".

My doctor asked me if there was anything that she should have done or said differently in my case. I told her that she should at least advise her patients with fibroids that there is a chance however slight that the fibroid could be cancerous. A rapidly growing fibroid and uterus should be monitored very carefully by a woman's physician. Better safe than sorry......

I think that the literature on fibroids ( from the internet, ACS) should be re-worded to advise women that there is a slight possibility that fibroids are cancerous. I was thinking about calling the American Cancer Society as a starting place.

Thanks for listening. This is an awesome sight and I am so impressed and awed by the courage of the sisters on the cancer forum. I am asking my doctor to consider giving out information on hystersisters to his patients about to undergo a hysterectomy. God bless you all.

Bigbear
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  #2  
Unread 07-13-2003, 04:30 PM
What You Should Know About Fibroids that I Didn't

Bigbear,

Thanks for this information. I have three pregnant girlfriends right now, and two of them were found to have fibroids. One has a fibroid the size of an orange, and when I saw her last night, she said that she's always feared cancer. She's actually on bedrest due to early contractions, so she has a lot of time to think.

Did you doctor say that encapsulated cancer, such as the type they found within your fibroid, can metastasize or spread easily? I've often heard that everyone has cancer, but something will trigger the cancer to start growing out of control. And it's that "trigger" that no one seems to know how to pinpoint.

The one friend will probably be having a C-section, as her baby is breech. I wonder if they will look at the fibroid at that time, or biopsy it? Maybe I will suggest that to her if it's not something they'd ordinarily do. I think my other friend's fibroids are much smaller.

I have another, non-pregnant friend who has big, painful fibroids, but she does not want surgery. She is trying a lot of alternative cures and has met with healers. Is there any link between fibroids that cause pain / bleeding and a more serious condition? Or could benign fibroids also cause those symptoms?

Sorry to ask so many questions. I don't know anything about fibroids, but a lot of my friends have them. Thanks in advance for any info you can share, and for posting this "awareness" story.
  #3  
Unread 07-13-2003, 04:32 PM
Good that it was contained

Hi Bigbear, Very good news that the tumor was contained within the fibroid.

I search "leiomyosarcoma" on Google and found www.leiomyosarcoma.org. While looking around the site a little I saw this, "Uterine leiomyosarcoma is often hidden within 'benign' uterine fibroids. Sometimes the pathologist reporting on the hysterectomy specimens misses the LMS cells hidden away within." Evidently leiomyosarcoma can be found in any smooth muscle cells.

Another site which was quoting a report from the Mayo Clinic said that leiomysarcoma is rare as it is and even rarer to be found in fibroids.

Now you have to get the cancerhead contained. Good luck!

Mary D.
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  #4  
Unread 07-15-2003, 06:23 AM
What You Should Know About Fibroids that I Didn't

Hi bigbear
just curious what your oncologist or your reg. gyn recommended about hormones. you and I have nearly similar cases except in my case both oncologists recommended every 6 month checks. anyway, I got one rec. to stay on the bioidentical estrogen patch and the other onc. said get off hormones.
I agree that the cancer society should revise their information. The only place I saw mentioned that fibroids could be cancerous was Dr. Christiane Northrup's book The Wisdom of Menopause. She devotes one or two sentences and then indicates that most of the time surgical removal does not prevent the spread of the cancer. I have never been so traumatized in my life as after that cancer was found. I too put off my surgery from Nov. to May to make it easier for me to recuperate because of my job as a social worker in a school system. anyway, glad to hear you are doing well!
  #5  
Unread 07-15-2003, 01:28 PM
What You Should Know About Fibroids that I Didn't

MAW,
Yes, our cases are very similar and I would like follow-up with you and stay in touch.
In my opinion, my ob/gyn did not seem to know alot about hormones and neither does my gyn/onc. I have resorted back to my PCP (who is a female, by the way, and into alternative medicine) who suggested that I stay clear of hormones. Prior to the surgery, I had read a great deal about them and thought that there was too much controversy surrounding their use so I opted for no hormones. I am taking a vitamin supplement that she recommended along with calcium and Omega-3. I am drinking lots of green tea for its antioxidant value as well and eating more leafy green vegteables than I have ever eaten in my life - also for their antioxidant value.

I too have been traumatized by this event and have a hard time focusing although I am back to work and being around other people has helped a great deal. You didn't say how big your fibroid was... I also wonder why the doctor has you on a 6 month follow-up schedule? Did you get a CT Scan (pelvis, lung and stomach)? What other information did he share with you? Just curious. Fell free to PM me.

Bigbear
  #6  
Unread 07-15-2003, 02:07 PM
What You Should Know About Fibroids that I Didn't

Hi Big Bear
My fibroid was the size of a tennis ball or orange and the cancer was very small within that. Not sure why the drs. advised the CT scan every six months but I know that both oncologists and the hospital tumor board which my dr. presented my case to all said the same. the scan was of the same areas you mentioned. I may ask my dr. about this when I review the whole hormone dilemma with him. I had finally thought I could not focus on all this and get back to day to day living, now I am obsessed with the HRT. I'm leaning toward going off within the next couple months though and just dealing with the symptoms. Usually I am not totally ready to return to work in the fall but am actually looking forward to it to keep my mind more occupied. I have appreciated sharing info w/you as to me it is incredible how similar our stories are right down to the dates of appts! although in terms of symptoms prior to surgery, I had many, including heavy bleeding, bloating, anemia etc. keep in touch and one last quest. what vitamin supplement are you on and did your alternative dr. recommend anything for vaginal dryness?
  #7  
Unread 07-15-2003, 06:30 PM
What You Should Know About Fibroids that I Didn't

MAW,
Thanks for your reply. I haven't been bothered with vaginal dryness nor hot flashes or night sweats - just achy joints which my PCP said is a menopausal symptom. (Joint pain was another symptom by ob/gyn did not associate with menopause).

I didn't have any symptoms from the fibroid until close to one month before the surgery ( and at that point I knew I had one) and then I began to feel bloated and was anemic as the fibroid needed a blood supply to grow.

The vitamins my PCP recommended are Juice Plus which come in a powder or capsules. They are made from all natural fruits and vegetables. They are high in antioxidants. You can mix it with skim milk, soy milk, yogurt or the liquid of your choice. She also recommended a vitamin called, Kaprex, for the achy joints. This vitamin is made from rosemary and olive leaves and is supposed to be easy on the stomach. Both vitamins have information contained on their web site - you may want to check it out.

Let's stay in touch as you said our cases are very similar and now I don't feel so "alone" like I am the only one out there with this diagnosis.

Bigbear
  #8  
Unread 07-15-2003, 06:53 PM
What You Should Know About Fibroids that I Didn't

Thanks for the info. I'm new here and am scheduled for a TAH in October for fibroids. This board is fantastic. It's given me a lot of information and allayed a lot of my fears.

My internist said the fibroids were nothing to worry about and usually nothing was done, but he sent me to a GYN to cover his a**. After the GYN heard my symptoms, which aren't that bad -- heavy bleeding, some bloating and occasional pain with intercourse -- and did his examination, he immediately recommended the hysterectomy.

No one mentioned anything about cancer, but I have been trying to figure out how they can possibly know it's a nonmalignant fibroid or a cancerous tumer without looking at it!
  #9  
Unread 07-16-2003, 01:38 PM
What You Should Know About Fibroids that I Didn't

Hi Big Bear,

Amen! I too had a TAH in December for a fibroid, bloating, heavy bleeding and anemia. I asked my Gyn if he thought it could be Cancer, and he said it would be doubtful as I had a D&C, biopsy, and PAP smear all negative. Lo and behold hidden inside my fibroid lurked a malignancy. I have Endometrial Stromal Tumor resembling Ovarian Sex Cord, in the same family as your cancer, but the rarest of rare. About 45 people documented to have it. Fortunately it was caught early and is now gone. Estrogen I was told is a big no-no. I went cold turkey and feel great. I too am on juice plus, and fish oil. I feel great on it. My follow up will be vigilant for some time. 3 month GYN exams, and six month scans of chest, abdomen and pelvis.
Thanks for helping to spead the word. Prolonged, excessive bleeding or bleeding after intercourse are sure signs something is amiss. I thank God and my Husband and my Surgeon everyday for "coercing" me into not waiting to have the surgery.
  #10  
Unread 07-16-2003, 01:53 PM
Fibroids

I had hyst 13 years ago due to fibroids and heavy bleeding. No cancer was suspected. After the surgery, my doctor reported to me that pathology found no cancer. I was surprised to hear that as none was suspected. I'm guessing now that all / some doctors routinely have removed organs / tissue tested for cancer.

Mary D.
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