Questions To Ask Radiation Oncologist For External Radiation

woodstock99

Hi All -  I have an appointmnet this Monday afternoon with a radiation oncologist that my gynecologist oncologist referred me to for 25 external radiation treatments she feels I need post-op for my stage 1b grade 3 EC. 

I am still in the process of getting second opinions about next steps/treatemnt from one local GO and online from MD Amnderson and Stanford (I like to do my due dilegence) but figured I would see this RO and at least have this session if all roads lead back to this for me.  

I would really apprecaite it from those who have had this if you can help me with questions I should be asking about the treatement, method, short-lomng temr side efecets, what this means if I do this now byt get recurrence later, impact on recurrence & survival rates, etc. 

 Also, when my GO called me late Tuesday this week and said I should srt within 4-6 weeks, I assume she meant 4-6 weeks from when she called me, yes?

And would there be differemces from one radiation facility to another or with the RO?  Does where you go for radiation matter? 

Is there a better time of day to do treatements since you have to do same time every day? 

I am really not sure what to ask and I am still pretty scared and overwhelmed by all this and feeling that life as I know it had irrevocably chnaged. 

Many thanks.

MAbound

Options

When I met with my RO prior to external radiation, he was pretty thorough and detailed about his treatment plan and then had me sign that he did so and that I understood and agreed to it. The issue for me wasn't so much what questions to ask, but being able to understand what he was proposing. I didn't know until we met what method was going to be used for radiation delivery, but fortunately I had read up on the possible options so that I was prepared to understand what he was explaining to me. That's where'd I start if I were you. Just google pelvic radiation delivery options and a lot should come up.

Undergoing external radiation itself is pretty easy, but I'll admit to crying through the first treatment because I was still worried about all of the potential side effects, especially the late-occuring ones, and still doubted my decision to go through with it. I have no regrets now, but I understand your fears and won't dismiss them. Agreeing to radiation or saving it for recurrence feels like a big gamble whatever you decide. It will help you to read up on the different delivery methods because they've gotten pretty good at aiming to minimize risk these days.

Start taking a probiotic now, stay on top of vaccinations, expect to need to keep drinking a lot of water, have Immodium on hand in case you have diarrhea (for me, my chemo constipation continued, so I kept taking Miralax), protect yourself from people who might have colds, flu, or Covid (it can take 6 months after radiation for your immune system to get back to normal), and expect to need to deal with some more fatigue. 

I'd call your doctor to clarify about the 4-6 weeks. I started my radiation 4 weeks after my last chemo infusion, so maybe it's supposed to be 4-6 weeks after surgery if you don't have chemo. 

woodstock99

MAbound said:

Options

When I met with my RO prior to external radiation, he was pretty thorough and detailed about his treatment plan and then had me sign that he did so and that I understood and agreed to it. The issue for me wasn't so much what questions to ask, but being able to understand what he was proposing. I didn't know until we met what method was going to be used for radiation delivery, but fortunately I had read up on the possible options so that I was prepared to understand what he was explaining to me. That's where'd I start if I were you. Just google pelvic radiation delivery options and a lot should come up.

Undergoing external radiation itself is pretty easy, but I'll admit to crying through the first treatment because I was still worried about all of the potential side effects, especially the late-occuring ones, and still doubted my decision to go through with it. I have no regrets now, but I understand your fears and won't dismiss them. Agreeing to radiation or saving it for recurrence feels like a big gamble whatever you decide. It will help you to read up on the different delivery methods because they've gotten pretty good at aiming to minimize risk these days.

Start taking a probiotic now, stay on top of vaccinations, expect to need to keep drinking a lot of water, have Immodium on hand in case you have diarrhea (for me, my chemo constipation continued, so I kept taking Miralax), protect yourself from people who might have colds, flu, or Covid (it can take 6 months after radiation for your immune system to get back to normal), and expect to need to deal with some more fatigue. 

I'd call your doctor to clarify about the 4-6 weeks. I started my radiation 4 weeks after my last chemo infusion, so maybe it's supposed to be 4-6 weeks after surgery if you don't have chemo. 

Thanks for your insights.  It

Thanks for your insights.  It is a very difficult decision to make right now as I am stil so overwhelmed by all this and it's not like a pill you can stop taking if you change your mind or have bad side effects.  I feel it will cause me so much worry and doubt about what may hapepn becuase of the radiation in addition to worroing about recurrence and every 3 month checkup and I do believe stress is a cancer driver to some degree. 

I am the type of perosn who overthinks everything and unfortunately not a one day at a time personality.  I am always thinking ahead and planning for every possile scenario.  I know I can work through the short-term side effects but it's all the long term ones I have frighnetened off and if I understood what I was told treatemnt does not change 5 year survival rate just recurrence rate whihc is hard to wrap my brain around. 

And it seems like everyone on here has recurred particulallry with grade 3 and in some of the FB groups I joined (which I have unfollowed becuase they were all gloom and doom) so is the 25-30% chance of recurring w/o radiation and 12.5%-15% with  radiation really viable numbers? 

Has anyone here declined radiation with stage 1b/grade 3 and if so how have you done? 

f I decline will my GO fire me as a patient?

My head is spinning. I am a fighter and a tough cookie but I did not go through this when I had breast cancer 6 years ago.   

This is a different ugly animal. 

Thanks.

Forherself

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8045106/

Table I

Approaches to management of early-stage serous endometrial cancer

 

Open in a separate window

VB: Vaginal brachytherapy; EBRT: external beam radiation. *Comparing early-stage, high-risk endometrial cancer (15% serous) vs. VB + chemotherapy, found increased hazard ratio for pelvic or peri - aortic nodal recurrence in VB + chemotherapy at 3 years; no difference in overall survival was noted in subgroup analysis of patients with stage I serous disease. **Compared with EBRT alone in women with high-risk endometrial cancer, finding increased progression-free and overall survival with the addition of chemotherapy. Due to lack of statistical power, it was not possible to analyze survival stratified by stage in serous cancer.

Forherself

Forherself said:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8045106/

Table I

Approaches to management of early-stage serous endometrial cancer

 

Open in a separate window

VB: Vaginal brachytherapy; EBRT: external beam radiation. *Comparing early-stage, high-risk endometrial cancer (15% serous) vs. VB + chemotherapy, found increased hazard ratio for pelvic or peri - aortic nodal recurrence in VB + chemotherapy at 3 years; no difference in overall survival was noted in subgroup analysis of patients with stage I serous disease. **Compared with EBRT alone in women with high-risk endometrial cancer, finding increased progression-free and overall survival with the addition of chemotherapy. Due to lack of statistical power, it was not possible to analyze survival stratified by stage in serous cancer.

The above article from March 2021

It is hard to decide.  I shared this article earlier.  I think it is a very comprehensive article.  

woodstock99

MAbound said:

Options

When I met with my RO prior to external radiation, he was pretty thorough and detailed about his treatment plan and then had me sign that he did so and that I understood and agreed to it. The issue for me wasn't so much what questions to ask, but being able to understand what he was proposing. I didn't know until we met what method was going to be used for radiation delivery, but fortunately I had read up on the possible options so that I was prepared to understand what he was explaining to me. That's where'd I start if I were you. Just google pelvic radiation delivery options and a lot should come up.

Undergoing external radiation itself is pretty easy, but I'll admit to crying through the first treatment because I was still worried about all of the potential side effects, especially the late-occuring ones, and still doubted my decision to go through with it. I have no regrets now, but I understand your fears and won't dismiss them. Agreeing to radiation or saving it for recurrence feels like a big gamble whatever you decide. It will help you to read up on the different delivery methods because they've gotten pretty good at aiming to minimize risk these days.

Start taking a probiotic now, stay on top of vaccinations, expect to need to keep drinking a lot of water, have Immodium on hand in case you have diarrhea (for me, my chemo constipation continued, so I kept taking Miralax), protect yourself from people who might have colds, flu, or Covid (it can take 6 months after radiation for your immune system to get back to normal), and expect to need to deal with some more fatigue. 

I'd call your doctor to clarify about the 4-6 weeks. I started my radiation 4 weeks after my last chemo infusion, so maybe it's supposed to be 4-6 weeks after surgery if you don't have chemo. 

Thanks so much.  I already

Thanks so much.  I already take a probiotioc. There are so many different types out there.  Is there a soecific one I should be using? I appreciate your candor and suggestions.  

woodstock99

Forherself said:

The above article from March 2021

It is hard to decide.  I shared this article earlier.  I think it is a very comprehensive article.  

Thank you.  I will copy and

Thank you.  I will copy and paste the link to read it full.  

cmb

woodstock99 said:

Thanks for your insights.  It

Thanks for your insights.  It is a very difficult decision to make right now as I am stil so overwhelmed by all this and it's not like a pill you can stop taking if you change your mind or have bad side effects.  I feel it will cause me so much worry and doubt about what may hapepn becuase of the radiation in addition to worroing about recurrence and every 3 month checkup and I do believe stress is a cancer driver to some degree. 

I am the type of perosn who overthinks everything and unfortunately not a one day at a time personality.  I am always thinking ahead and planning for every possile scenario.  I know I can work through the short-term side effects but it's all the long term ones I have frighnetened off and if I understood what I was told treatemnt does not change 5 year survival rate just recurrence rate whihc is hard to wrap my brain around. 

And it seems like everyone on here has recurred particulallry with grade 3 and in some of the FB groups I joined (which I have unfollowed becuase they were all gloom and doom) so is the 25-30% chance of recurring w/o radiation and 12.5%-15% with  radiation really viable numbers? 

Has anyone here declined radiation with stage 1b/grade 3 and if so how have you done? 

f I decline will my GO fire me as a patient?

My head is spinning. I am a fighter and a tough cookie but I did not go through this when I had breast cancer 6 years ago.   

This is a different ugly animal. 

Thanks.

Keep in mind that many women

Keep in mind that many women join the site when they are first diagnosed. If their initial treatment was successful and they do not recur, many of these same women stop posting to this site. So this board and others like it will always have more posts from those women who have recurred or were never free of cancer at all. Therefore, we can't say that most women with grade 3 cancers have recurred, based on who participates on this board.

I was Stage 3B with a different, rare grade 3 cancer and I haven't recurred so far. Was it the chemo or radiation or both that have kept the cancer at bay for almost 4 years? I don't know. I am, however, personally glad that I elected to treat this cancer aggressively. If it comes back, at least I won't have any "should have" regrets.

Making the decision to have radiation early on or save it for recurrence is a personal one that will vary by person. Women here have gone both ways with equally valid reasons. Once you learn more about the proposed process and understand what the possible side effects might be, you'll be in a better position to make a decision one way or the other.

woodstock99

cmb said:

Keep in mind that many women

Keep in mind that many women join the site when they are first diagnosed. If their initial treatment was successful and they do not recur, many of these same women stop posting to this site. So this board and others like it will always have more posts from those women who have recurred or were never free of cancer at all. Therefore, we can't say that most women with grade 3 cancers have recurred, based on who participates on this board.

I was Stage 3B with a different, rare grade 3 cancer and I haven't recurred so far. Was it the chemo or radiation or both that have kept the cancer at bay for almost 4 years? I don't know. I am, however, personally glad that I elected to treat this cancer aggressively. If it comes back, at least I won't have any "should have" regrets.

Making the decision to have radiation early on or save it for recurrence is a personal one that will vary by person. Women here have gone both ways with equally valid reasons. Once you learn more about the proposed process and understand what the possible side effects might be, you'll be in a better position to make a decision one way or the other.

Makes perfect sense.  I know

Makes perfect sense.  I know the more I have I will be able to make clearer decision and feel that it is the right one for me.  I am still in emotional and information overload.  Thansk so mcuh.  I appreciate everyone here.