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Diagnosis In Progress - Insights appreciated

Sue1144
Posts: 1
Joined: Jul 2006

I had my follow-up appointment with the gyn-oncologist who performed my surgery (done on 7/3- total hysterectomy, omentumectomy, lots of tumors throughout abdomen removed). He said that the pathology results are not done yet because the histology was sent to Brigham-Young for futher consideration.

He said the good news is that the cancer is thought to be of low malignant potential (LMP). He explained that such cancer is often non-invasive and such carcinomas are not treated but watched over time. Intervention would only be required if tumors are causing problems (blockages, etc). In my case, there is a question of the degree of invasiveness of the tumors to surrounding tissues. If the cancer is deemed "invasive" it is thought to be a cancer that is well differentiated which is "good" news.

The tricky part is that if this is non-invasive LMP it is contra-indicated to receive treatment as chemo therapy often turns this cancer into an aggressive type. However, if it is invasive and well-differentiated, then chemo therapy is the treatment of choice (and this form is known to respond well to chemo).

He said that this explains my relatively low CA 125 result (144). Because the cancer is of low malignancy and perhaps minimally/no invasiveness that my body does not recognize it through a typical response that is sensitive to CA125. He said that it also explains why I had no symptoms of pain because there was no response via inflammatory process from my body.

Geez, I guess this is good news??!!??? Meanwhile, I have to wait 2 more weeks for results. He expressed surprise by this "good" finding/s. I came away from the appointment with a sense of relief, but feel anxiety rising as I ask myself questions about why I had to have a total hysterectomy (at age 37) and concern over being properly diagnosed and treated correctly to avoid an aggressive cancer.

Any insight? Hope you are all well today,
Sue

mopar
Posts: 1948
Joined: May 2003

Sue:
Hold on to all the positives that have been given to you. It sounds like your doctor is very thorough and keeps you well informed. I know waiting for results can be difficult, but again, keep the faith.

I must admit, however, that some of what you mentioned I had not considered (LMP, differentiated, etc.). I will go back to my surgical and chemo reports to see if these things were mentioned. My first occurance was in 2000 (same surgery as you as well as 6 rounds of chemo), with a recurrance this February (surgery to remove a small mass, lymph nodes which were clear) and receiving my last of 6 rounds of chemo this Wednesday. I know you are young and question the reason for a total hysterctomy, but again I believe your doctor did the right thing.

So, I'm sorry I cannot answer your specific questions, but I am encouraged by all your good news. My CA125 is currently at 8. The highest was 90, after my first surgery. For 6 years is fluctuated between 14 and 19, then steadily began to climb last year and went up to 30. So, it was that consistent rise that alerted us, especially since I had NO symptoms (just as before).

Keep us informed. Sending prayers and hugs your way!

Monika

charlissa
Posts: 13
Joined: Jan 2006

Sue, Hang in there. I to have Ovarain Cancer, with a colostomy. My ca125 went down to 10 back up to 49. I just had another CAT scan Iam o.k Praise God. You hang in there take care. I am currently getting maint chemo, and going on my 12th treatment. It has been tough but with love hope and prayers I am going to beat this. and Sister you can too. You and your family are in my prayers. Prayers and hugs to you! Diana

jamilou's picture
jamilou
Posts: 202
Joined: Mar 2005

Sue
You have been given a lot of information and I am sure it is somewhat overwhelming. You would expect to have chemo treatments when you are told you have cancer but it sounds like that could be the wrong thing to do in your case. My cancer was well differentiated and because of that it responded well to chemo. Maybe the CSN folks can point you to a website that will give you more info on your type. Good Luck and I hope you can find the good in your results and continue to do well!!
Jami

groundeffect
Posts: 651
Joined: Mar 2003

Your LMP news is good. You didn't say what your cancer was staged at, but perhaps that is still forthcoming, also. I haven't heard of the standard carboplatinum-taxol chemo turning the cancer cells into a more aggressive type, but I do know the cells can turn much more resistant once a woman is treated with it, so the oncologists like to delay its use again (if necessary) as long as possible.

I didn't have a CA-125 test before surgery, and the first record in my files (that I know of) had the level at 94. It's been between 13 and 19 since the end of my chemo.

I like to recommend books if I know of any to help people. My favorite book for OVCA reference has been "Gilda's Disease" by M. Steven Piver, Chief of the Department of Gynecologic Oncology at Roswell Park Cancer Institute. He wrote it in association with Gene Wilder. It was published in 1998, and it gives a clear description of ovarian cancer types, staging, and chemo. It's very readable and is not a big book. I was reluctant to take it out at the library because I had already listened to Gilda's book "It's Always Something" on tape, and found it disturbing-believe me, we deal in a totally different treatment era than she did, and I'm thankful.

You are young to have had a hysterectomy, and I sympathize with you-I had a myomectomy to remove fibroid tumors (totally unrelated to my later cancer) when I was 42 because I didn't want to consider a hysterectomy.

As you learn more about ovarian cancer, I'm sure you'll begin to appreciate why you had to have a hysterectomy, and I hope you'll start to feel relief that you had it before you were totally involved with the disease, as so many women are.

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