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Low malignancy Potential Low malignancy Potential

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  #1  
Unread 12-05-2000, 04:18 PM
Low malignancy Potential

I am 5 weeks post op for a complete abdominal hysterectomy. I don't have a copy of the pathology report, get that next week from the doc, but it was rather complicated, and it took 4 pathologists to agree to let me go with no chemo. I had tumors of low malignancy potential on both ovaries, a large fibroid on the uterus, as well as a calcified tumor, and both tubes blocked with blood clots and "globus material"

The oncologist who assisted during the surgery said checkups every 4 months, and my regular ob/gyn can do that if I prefer (I told him I felt more comfortable with my regular doc) but he never mentioned follow up ca125 tests, or ultrasounds. Since the cancer was NOT felt by my ob/gyn, OR the gyn oncologist even after they knew they were there, I am wondering what a plain old pelvic exam is going to show them if it returns.

Has anybody else had LMP tumors? And how did they do follow-ups? My doc doesn't know what to do about it, although he and I both feel that the follow-up ca125 is a good idea.

What do you girls think?
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  #2  
Unread 12-06-2000, 06:13 AM
Low malignancy Potential

All of us have to remember to continue going in for our pap smears and exams. The pap will monitor for vaginal cancer,which is pretty rare, but needs to be checked! As for the CA125, well I would agree to have that done too. Anything that could give you a warning sign would be helpful! I hope that this has helped you out somewhat. Good luck and continue to rest...you still have a lot of healing to do!
  #3  
Unread 12-06-2000, 07:21 AM
Low malignancy Potential

Aint that the truth. I was beginning to worry about the fatigue until I found this message board, and no longer worry that I am healing slowly. Pain disappeared by the end of week 3 and I assumed that I would start feeling normal with the end of pain.

Now I am just upset with the oncologist for not even giving me and my ob/gyn a clue as to what kind of testing should be done with those 3 pelvic exams a year he said I should have for the rest of my life! I will not be allowed to skip any of them, my doc and his office manager/wife are my husband and my best friends, and I can gauranted that they will stay on top of it if I don't. Since I no longer have a cervix, Doc said that I will only need a pap smear once a year, but a pelvic at the suggested intervals.

He also wants to do follow up ca125 tests, but is not sure how often these should be done, and I want the ultrasounds to ease my mind. We were all shocked and frightened by the one that found the ovarian tumors (yes, the doc was scared, and badgered me about not telling him of symptoms, of which there were none. Yes, I felt bloating, and changes in BMs, as well as bladder changes (heavy stress incontinence after periods, which worsened over time) but having irritable bowel syndrome I just assumed that this was because of that, seemed to fall in line with those symptoms!

I do know that I am frightened about a recurrance, and want to have any and all necessary tests, I just don't know what those tests should be. I talked to a woman I found on an australian OVCA board, and she said she haas the ca125 as well as ultrasound every 4 months since her hysterectomy and diagnosis.

I will do whatever it takes to be healthy for however long God decides to allow me my health.

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  #4  
Unread 12-06-2000, 07:32 AM
Low malignancy Potential

I suffer from IBS also! It's not fun, and I had mine under control for years before my surgery. It seems that my surgery really has made it kick up it's heels!! I kept thinking that my swelly belly was from the hyst, but come to find out, the IBS was ready for a fight!
Have you spoken to your doc about what you should expect? If he has questions, than it should be up to him to contact the specialist and find answers for both you and himself. Please don't sit on this, because the sooner you know, the quicker you will relax. Whatever needs to be done, we just need to stay on top of things and not get lazy in our check-ups. That is good that you have "Connections" who will not allow you to do that! Even though I am sure that things will get to be a hassle every 4 mos, once it becomes routine it won't be a big deal anymore. It will just go on the calendar out of habit.
Please keep us posted...and please keep resting!! That tired feeling will last quite a while yet. Remember to listen to your body and when it tells you to rest, then you need to do just that...REST!
  #5  
Unread 12-06-2000, 05:43 PM
Low malignancy Potential

My ovarian tumor was of low malignancy potential. I have to have follow up exams 4 the 1st year, 3 for 2 years, 2 for 3 years then 1 for the rest of my life. I too had no chemo or radiation after sugery since the biopsies they took all came out normal. The pap smear will happen because they look for vaginal cancer. The frequent check ups are used to feel abnormalities in the abdominal cavity. I was told that if cancer came back in my case it would be in my abdominal cavity in my lymph nodes. That is why I am supposed to report any unusual pain in my abdomen and of course any vaginal bleeding. I have to have a yearly Ct scan too. They never mentioned a CA125 test for me because the type of tumor I had is not detected through the blood.
The fear of it coming back I guess will always be there even if it is highly unlikely. Fear can be a good thing though because it should make us keep those check up appointments.
  #6  
Unread 12-07-2000, 09:07 PM
Low malignancy Potential

I also had tumors on both ovaries and no symptoms. I had problems with heavy periods. First I had an ultrasound, then a D&C and then the hysterectomy - TAH/BSO. My doctor first told me that I had Stage Ia uterine cancer and Stage Ic ovarian cancer. The final on the ovarian cancer was changed because the gyn oncologist took my slides from the hospital where the surgery was done and had them reviewed at the University Hospital Ireland Cancer Center--the result then was Low Malignant Potential. Rather than chemo, which he had discussed with me (including all the details of hair loss, etc.), he told me I needed to see my gyn every 3 months for a pelvic exam for the first two years (pap twice a year), then twice a year for the next 10 years. He told me any recurrence would be handled by surgery. I had a CT scan September 1st, which came out ok. The oncologist did not recommend routine CT scans or chest x-rays, only the exams and pap tests. I had my last exam on 10/26 and was ok.
I know what you feel because I am the same way. We think we should be happy not to have cancer--but it is always in the back of our mind.
My Mom died from colon cancer in Feb. of 1998. My next test is the colonoscopy (first one done 3 years ago). I am not looking forward to any bad news, but know I need this test every 3 years.
If you would like to e-mail me, I can be found at [email protected]
  #7  
Unread 12-08-2000, 12:33 PM
Low malignancy Potential

God, I HATE colonoscopes! All that nasty prep! makes me shudder. I had first (and hopefully last) about a year ago to confirm IBS diagnosis, although there was no question in my mind, I have had IBS for over 20 years.

I guess I am just upset with the oncologist for not discussing follow-ups with my ob/gyn. Maybe he was upset with me for opting not to do follow-ups with him. (He is in an inconvenient location, LIKES to do rectal exams, which I cannot tolerate due to post-rectal (2 years ago) surgery pain and I don't much care for his big office "Kaiser hospital" feel. I LOVE my ob/gyn.

Doc doesn't really have answers as to what low malignancy potential means, and is unable to really find any guidelines as to what needs to be done. I talked to a woman who gets a transvaginal ultrasound AND ca125 every 4 months. The oncologist just said 4 exams a year for three years, then three times a year forever. He also said if this perticular type of cancer were to come back it would be before 3 years or after 10 years, rarely comes back between 3 and 10 years after.

In that I had a high ca125 (237) I WANT at least a follow-up, and I would think in that they could not feel those BIG tumors by exam, and lymph nodes sit basically on the spine, and are microscopic, they will not be able to feel much in the way of re-growth until it is too late, so I think either an ultrasound or a CT scan at least once a year would not be out of the question.

I believe in being overly cautious, and want to make sure that I know what to ask for. Doc usually agrees with whatever I want, so that should not be a problem.
  #8  
Unread 12-10-2000, 08:02 PM
Low malignancy Potential

Hi,

I was dx'd in July with LMP on one ovary, by the Gyne on-call in the ER. After the pathologist comfirmed LMP, the Gyne recommended that I meet with a Gynecologic/Oncologist which I did (2 to be exact). A few weeks later I had the complete hyst by the Gyne/Onc. As I am staged as 1a, I did not require chemo. If it had been staged as 1c or worse, I would have needed chemo. You need to read your pathology report closely. There are many types of tumors, mine is "serous." The serous tumors typically show up in the CA-125 test (which I will be having every 3 months for the next 2 years). "Mucinous" tumors, on the other hand, do not show up in a CA-125 test. Gyne/Onc's rely on internal exams and patient symptoms, as well as the CA-125. CT scans are usually done when symptoms present themselves...bloating, etc.

You would do yourself a favor by thoroughly understanding your pathology report (get the entire surgical report from your doctor) and finding a Gynecologic/Oncologist to monitor you. The earlier this is caught, the better (which it sounds like it was !)...but recurrence can happen, and being in good hands, with someone who knows how to handle LMP is half the battle.

My email address is at the bottom, please feel free to contact me privately if you would like.
  #9  
Unread 12-11-2000, 07:17 AM
Low malignancy Potential

Yeah, been there, done that. Spent 2 hours with Docs wife (office manager) asking her what all the terms meant. I had serous lmp tumors in both ovaries. It is just that nobody has a good definition for lmp.... I hate that.

My oncologist said in these types of tumors, if you get reoccurances, it will be in the first three years, or after 10 years. That certainly eased my mind, NOT!

As for symtoms, I did not have any this time, with a 12 cm ovary, and a 19 cm ovary....
I have Irritable bowel syndrome, and guess what the symptoms of that are? Same as for ovarian cancer. I suffer with this daily, so there is not a chance that I am going to say "Gee, I feel funny, I should see my doc."

The oncologist didn't say much other then checkups every 4 months, but what is included in those checkups? He certainly did not tell my ob/gyn, who will be doing these. Although I am sure Doc will find out. He HATES mysteries.

Oh well. I guess we will figure something out.
  #10  
Unread 12-15-2000, 07:13 PM
LMP recurrence?

I have been having pain deep in my left side and am afraid of a possible recurrence. If it doesn't go away by Monday, I guess I will call my gyn (surgeon). I just don't plan on spending any time in the hospital soon -- especially over the holidays.
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