What is the correct diagnosis and survival rate for my cancer?

[cally755]

Original endometrioid cancer in L ovary with endometriosis found overlying the L tube, in 2003. The latter had dysplastic changes and they were unsure if this was cancer of ovarian origin or related to the endometriosis. Full surgery and chemo-Taxol/Carbo. In 2005, recurrence found in upper rectum which was frankly endometrioid and oestogen receptor positive. Is this what is known as endometriosis associated ovarian cancer (EAOC) or is it endometrial cancer from the endometriosis turned malignant and how do they decide? What is the difference?Apparently, this single recurrence in the pelvis is acting less like an ovarian cancer. They treated it by bowel resection, chemo and radiotherapy. No recurrences since. In the NHS, after 2 yrs free, they don't follow you up as no evidence of survival benefit in trials. They will see you 'as and when'. My other question after which diagnosis is, what then is my 5 yr/long term survival, although it is almost 5 yrs next year since the single recurrence? Any information would be much appreciated.

[Annekathryn Goodman, M.D.]

Dear Cally,
thank you for your question.

You have done well and have had no evidence of recurrence in almost 5 years.

It is hard to know if you had a recurrence in 2005 or a second malignancy. You have had very good treatment for both cancers 2003 and 2005.

I would consider you high risk for another cancer.  Since you are in the British health system, find out what are the standard allowed visits.  I have to assume that you are allowed a visit with a general practitioner once a year.

if so, you need to make sure she or he does a pelvic exam and a rectal exam . You also need a check for blood in your stool.

Now if you are told that you can only come back "as needed" then push the system.
Perhaps you are a stoic, non complaining soul and do not think you are having any problems.
However, I absolutely agree with Doicat. You need close follow up.

With the kind of therapy you have received, you must have consequences to that therapy such as diarrhea, occasional blood in the stool, occasion gas and crampy pain.  You might think those are just the normal consequence of therapy and you are fine and do not want to complain.

No - complain.!
Tell your practitioner that you have symptoms - describe them. I suspect that you will get a satisfactory evaluation if you do. I am not saying to make up stuff that is not happening. But I know from my own wonderful patients, that they are reluctant to tell me about stuff that they live with every day that is the consequence of therapy:
such as
neuropathy form chemo
diarrhea and blood in stool from radiation
cramps from adhesions
narrowing of your stools

So the consequences of chemo can be secondary leukemias.
so you need a complete blood count at least once a year

consequence of radiation can be radiation enteritis, bleeding in the intestine, bleeding in the bladder, adhesions, vaginal narrowing

consequence of surgery can be adhesions, narrowing of the reconnection of your bowel

consequences of having 2 cancers can be getting another cancer

I have discovered that patients who get the best care of ones who push back and are advocates for themselves. Especially important when you are in a medical system that restricts and rations
best wishes

[doicat]

All I know is that Clear Cell OVCA is somehow connected to endometriosis. and I had endometriosis dx at 17 and confirmed at 23 when I had appendicitis.  I now have stage IIIC Clear Cell OVCA so WTF?

Survival with clear cell is relateded to stage...the earlier the stage the longer the survival.  I'd be very viligant with followups...

Best wishes to you