Borderline cyst and then hysterectomy. Please help.

[bluebean]

Hi,
I've just got home from hospital after having a total hysterectomy.

I'm 34 and I had a lap last November to remove a cyst on my left ovary. I had a phone call 2 weeks ago to say that they had just received my pathology results (they had been lost) and found borderline changes in the cyst and that they wanted to remove the ovary asap. They were going to try to conserve my right ovary as I hadn't completed my family, but long story short, during the op last week they found a 4cm cyst on my right ovary and the base of the ovary looked irregular. The surgeon decided the best option was to remove everything. So I had both ovaries, uterus, cervix, appendix and ommentum removed. I'm still waiting on the pathology of everything to come back. The surgeon said there was evidence of residual tumour on my left ovary, but there was no evidence of spread anywhere else. She decided that it was better to remove the right ovary rather than put me through the monitoring and maybe subsequent surgery in such a short time.

My surgeon insisted that the 4 months where they 'lost' my pathology results would not have changed the outcome. But I'm worried that in that time the residue left on my left ovary could have caused the cyst on my right ovary (which my surgeon said she thinks will come back benign, although we have been down that road before with my previous cyst). The right ovary looked clear during my surgery 4 months ago.

Could the residual on my left ovary have spread after it was exposed when the cyst was removed?

I'd be very grateful for your help. The answers you have given on other posts have helped me so much. I'm so down at the moment and don't know how I will be able to get over this.

Many thanks,
BB

[Annekathryn Goodman, M.D.]

Hi Bluebean,

I think you should be just fine.  It will be important to see your final pathology reports.  For a borderline tumor, waiting 4 months does not alter anything.In fact, we commonly will only take out a cyst in a borderline tumor in a young women who is trying to get pregnant. Then once a women has completed her family, one can go back and remove the rest of the ovary.

As a separate, general comment (which I say over and over again), all people should get copies of their reports - operative notes, pathology reports, xray reports.
I say this for several reasons:
-Information is power. When you are ill  or are having a problem, you enter the scary medical world. It is so much easier to navigate this world if you can advocate for yourself. (do not be passive!)
-If you see different doctors in the future, old reports about what you have been through are invaluable
-Information and details can get lost. Reading the report yourself and being sure you understand everything gets you better care.My patients have taught me this.
We all miss things and find them on review.

I am always so grateful to my patients for noticing something on a report. It is a way of cross checking that nothing is missed.

So, Bluebean, it is now a good 10 days since your surgery.The reports should be back. Be sure you get a copy of November's operation and pathology report and also this month's operation and pathology report.
Please let us know what happens.
best wishes

[Annekathryn Goodman, M.D.]

Hi there,
carcinoid tumors are really common in the appendix. In general, they are benign in their behavior.  You are probably completely treated. I usually also consider getting a colonoscopy to look at th rest of your colon

Another test you should ask your doctor about is doing a 24 hour urine collection for 5 HIAA. here is a link on that.  http://www.carcinoid.com/info/understanding/carcinoid-syndrome-diagnosis.jsp#hydroxyindole

best wishes

[bluebean]

Thank you so much for your reply. I have now received my pathology results. There were remnants of the Borderline Mucinous Tumour on the ovary. Everything else that was removed showed as clear. It said it was CK7 positive and negative with CK20, Synaptophysin, chromogranin and CD56.  I was so relieved to hear this until the consultant said 'you are full of surprises'.

She removed my appendix as part of the procedure and a 11mm in size grade 1 well differentiated neuroendocrine tumour (classical carcinoid tumour) which infiltrates into the mesoappendix up to 3mm (pT2) was found in the tip. It expresses CD56, chromogranin and Synaptophysin. Ki67 labelling is less than 1 percent. Excision was complete and distance to margin is 12 mm. I am now awaiting a CT scan next week to check if anything else is lurking around. I've been trying to read up on this type of tumour and was wondering - could this be linked to the borderline tumour on my ovary? I'm really worried about the fact that it infiltrated the mesoappendix. Does this mean it is classed as malignant? I've read there is a very low chance that it could have spread elsewhere, but can't help worrying that I have been the exception to the rule so far, what's to stop me being the exception again?

Many thanks,
BlueBean

[bluebean]

Hi, I thought I should add that my CA125 results were 26 just before the surgery last week. I have had these levels monitored for 2 years and they have slowly risen from the low 20's to 27 before I had my cyst removed and then back to 26 just prior to my surgery last week. My surgeon was very surprised with the results of the cyst because of these levels. Could I expect these levels to go down if the tumour has been removed completely?

I really appreciate any advice you could give.
BB