Is it better to be proactive or reactive with cancer treatments?

Hi @ronniem, I'm sorry to hear that you're going through this. I had a stage 1B grade 3 endometrioid cancer with LVS last year (at age 57). I ended up having chemo plus vaginal brachytherapy. This is what my gyn oncologist recommended. Like you, I initially had some doubts about whether this was the right treatment for me, so I got second and third opinions. They they each recommended something different (one pelvic radiation alone and the other external pelvic radiation plus chemo).

Another factor in determining which treatment is right for you is which genes are mutated in your cancer. Different endometrial cancers can be very different from each other. The way doctors categorize them is changing: from mostly basing it on the type (ie how the cells look under the microscope) to mostly basing it on which genes are mutated in the tumor.

There should be two things on your pathology report related to gene mutations. One is that it should say something like "Mismatch Repair Protein Immunohistochemistry" under which it will list results for MLH1, PMS2, MSH2, and MSH6. The normal result for each of these is something like "Nuclear staining present in tumor." Anything other than that means that your tumor has a mutation in one of the genes involved in mismatch repair, ie it is "mismatch repair deficient." The second thing your pathology report should have is a statement about whether the tumor is positive or negative for "p53", which is another gene.

A clinical trial called PORTEC-3 showed that the standard chemotherapy (carboplatin and taxol) is beneficial for patients whose tumors are p53 positive (ie mutated); that it has no benefit at all for patients whose tumors are mismatch repair deficient; and that there is limited benefit and virtually no effect on survival for patients whose tumors have normal mismatch repair and are p53 negative (ie normal p53). If you want to dig through the scientific paper, it's "Molecular Classification of the PORTEC-3 Trial for High-Risk Endometrial Cancer: Impact on Prognosis and Benefit From Adjuvant Therapy."

My tumor was p53 positive, so I decided that chemotherapy was right for me. Because of the p53 and the fact that it was grade 3, I thought that if my tumor came back, it would be likely to have spread in a way that would make it difficult to treat the second time. My impression from reading the scientific papers is that grade 1 and 2 endometrial cancers that are p53 negative are slow enough growing that even if they do recur, a more aggressive treatment on the second try is usually successful.

Chemotherapy is tolerable, but sort of ruins 4 months of your life. My feet are still somewhat numb three months later, and I did my best to prevent peripheral neuropathy. This side effect could be permanent. I would avoid chemo if possible. Vaginal brachytherapy is somewhat uncomfortable and very undignified for about 15 min at each treatment. I had no noticeable lasting side effects, so it had basically no impact on my life at all--thumbs up.

Hi @ronniem, I'm sorry to hear that you're going through this. I had a stage 1B grade 3 endometrioid cancer with LVS last year (at age 57). I ended up having chemo plus vaginal brachytherapy. This is what my gyn oncologist recommended. Like you, I initially had some doubts about whether this was the right treatment for me, so I got second and third opinions. They they each recommended something different (one pelvic radiation alone and the other external pelvic radiation plus chemo).

Another factor in determining which treatment is right for you is which genes are mutated in your cancer. Different endometrial cancers can be very different from each other. The way doctors categorize them is changing: from mostly basing it on the type (ie how the cells look under the microscope) to mostly basing it on which genes are mutated in the tumor.

There should be two things on your pathology report related to gene mutations. One is that it should say something like "Mismatch Repair Protein Immunohistochemistry" under which it will list results for MLH1, PMS2, MSH2, and MSH6. The normal result for each of these is something like "Nuclear staining present in tumor." Anything other than that means that your tumor has a mutation in one of the genes involved in mismatch repair, ie it is "mismatch repair deficient." The second thing your pathology report should have is a statement about whether the tumor is positive or negative for "p53", which is another gene.

A clinical trial called PORTEC-3 showed that the standard chemotherapy (carboplatin and taxol) is beneficial for patients whose tumors are p53 positive (ie mutated); that it has no benefit at all for patients whose tumors are mismatch repair deficient; and that there is limited benefit and virtually no effect on survival for patients whose tumors have normal mismatch repair and are p53 negative (ie normal p53). If you want to dig through the scientific paper, it's "Molecular Classification of the PORTEC-3 Trial for High-Risk Endometrial Cancer: Impact on Prognosis and Benefit From Adjuvant Therapy."

My tumor was p53 positive, so I decided that chemotherapy was right for me. Because of the p53 and the fact that it was grade 3, I thought that if my tumor came back, it would be likely to have spread in a way that would make it difficult to treat the second time. My impression from reading the scientific papers is that grade 1 and 2 endometrial cancers that are p53 negative are slow enough growing that even if they do recur, a more aggressive treatment on the second try is usually successful.

Chemotherapy is tolerable, but sort of ruins 4 months of your life. My feet are still somewhat numb three months later, and I did my best to prevent peripheral neuropathy. This side effect could be permanent. I would avoid chemo if possible. Vaginal brachytherapy is somewhat uncomfortable and very undignified for about 15 min at each treatment. I had no noticeable lasting side effects, so it had basically no impact on my life at all--thumbs up.