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
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
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
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