rare presentation

[lpotocki]

I had surgery 11/23 for what everyone thought was an ovarian cancer. After 7 days in pathologyad much discussion, the report came back as granulocytic sarcoma. I was promptly transfered to a hemotology/oncologist who diagnosed me with AML. He ordered bone marrow biopsy and blood work. Here is my problem.
1. pathology on the specimens were fixed based on an ovarian cancer and isn't realy very usufal for determining my type of leukeamia
2.  All bone marrow and blood tests have come back completely normal! no sign of leukeamia
My Hem/onc wants to treat me as if I have full blown AML and start induction therapy ASAP. I know this is an extremely rare presentation but is going ahead with chemo without having any markers to go by the correct path?
The tumor on my ovary was first discovered 10/10 by pelvic exam and 10/19 on ultrasound. Is classified as a complex mass which sent me on this jouney.
Any information you might add would really help

[riley180]

Hi.
Granulocytic sarcomas are rare and making recommendations is not easy. What is known is that they emerge from blood cells, and yes, there are reports of an association with myeloid leukemia. Most often it is attributed to the acute over the chronic myeloid leukemia.
Consider you symptoms: how rapidly did the symptoms evolve? can you estimate how large the mass was from changes in your abdomen over the last 2, 4, 6 months? The more rapid the evolution of symptoms, the more likely that it is AML. While you say that the blood and bone marrow were normal, was a cytogenetic study performed? The cytogenetics may help assess the aggressiveness of the disease (may potentially classify if it is more the acute than the chronic leukemia) and may provide a more compelling indication to start with chemotherapy. However, since this is a rare condition, your hematologist may not agree with doing this, since it is also possible that the test will only yield a normal result (which of course wastes resources and time).
While it is a valid concern that you would like more tests to establish if there is indeed evidence of leukemia before going with chemotherapy, bear in mind that all these tests are not fool-proof, and while there is benefit in removal of your ovary - this does not translate to cure for a leukemia. So that ultimately, you may need to make a decision soon, since the operation reduced the tumor burden, so the effectiveness of chemotherapy will be increased.
I get the impression that you have fears from associated effects with treatment. It is best you discuss these with your doctor to help you make a better decision.
My best to you.

[lpotocki]

The tumor was not detected on my normal pelvic exam in mid July. I had LRQ pain beginning of Oct and ultasound on 10/19 revealed a 5.6 cm mass. the mass had not grown much by the time it was taken out on 11/23.  I believe cytogentic studies are being attempted but there seems to be a problem with the specimens as they were originally fixed based on the assumption that it was ovarian cancer. I guess one of my biggest fears is that they want to administer treatment with no markers to go on.  I have completely normal bone marrow and blood work.  So how do they determine if the treatment is working or worked? I was under the impression that the diesease is monitored by your bone marrow and blood tests. A clear bone marrow and blood test should be an indication of a disease free state. Is there other evidence of the disease when it presents as a primary GS? Ultimately, agressive chemotherapy can lead to leukemia in the future so how do you know you did not just initiate it by the treatment? I am confused.

[riley180]

Hi.
Now I understand what you meant with the problems with the pathology specimens being intended for ovarian cancer. At most the cytogenetics will classify how aggressive, and will help select how intensive chemotherapy will be. In your case, with the rapid evolution of symptoms, I think chemotherapy will be indicated either way.
You are correct about monitoring the blood for cases of leukemia in general- but this is not an option for you. Technically, components of blood form accumulations that do not circulate and hence may go undetected.
Treatment is deemed successful if the disease does not recur. A duration of 2 years seems to be the goal, if you pass the mark, you'll be deemed cured. I know this sounds like a leap of faith, but it is regularly done for some cases of breast and colon cancer. The chemo works because the small amounts of cancer that are NOT detected by any imaging test can be killed by the chemo.
For these cancers though, surgery can be curative even without additional chemotherapy.  Hence, at most the surgery reduced the amount of detectable cancer, but it cannot eliminate it and hence will not be curative.
You are correct about the risk of a secondary leukemia after treatment. It becomes an issue of weighing risks, and it seems that the immediate risk of recurrence is more real and heavier than the potential risk of the secondary leukemia.
I think your decision can be simplified to this: either start treatment straight away and hope that recurrence never happens, or to monitor regularly, then at the earlier sign of disease, you will get a new biopsy (if technically feasible) and start treatment. consider your resources if it is possible for you to do either. Then you'll need to make a value judgment, based on your personality in terms of risk-taking behavior.
Stay positive. My best to you.