Radiation treatments I will have to have just got a call!

Posted by cheriels @cheriels, Sep 27 8:38pm

Hi
Just got a call from Rochester Mayo Clinic, even though my cancer was Stage 1 and with the hysterectomy they got it all the grade was 3 which means aggressive to spread , with that being said to make sue even though they got it all I will need radiation treatments to double make sure it does not spread. If this will stop it for good will be going for round 2 radiation treatments even though there is some side effect!😪. Will be getting a call in couple of days to set up the appointment!

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@cheriels I’m sad for you that you will have more treatment ahead. I had external radiation therapy last year and quite honestly had very few side effects. You won’t be surprised to know that Mayo’s care for radiation therapy is very patient-centered just like everything they do. When is your appointment in radiation oncology?

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@naturegirl5

@cheriels I’m sad for you that you will have more treatment ahead. I had external radiation therapy last year and quite honestly had very few side effects. You won’t be surprised to know that Mayo’s care for radiation therapy is very patient-centered just like everything they do. When is your appointment in radiation oncology?

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Hi
They will call me in a couple of days to let me know when I will have to start them. How many treatments did you have and what side effects did you have? They said they got it all so how can it spread do you know?
Thanks

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@cheriels

Hi
They will call me in a couple of days to let me know when I will have to start them. How many treatments did you have and what side effects did you have? They said they got it all so how can it spread do you know?
Thanks

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@cheriels. My situation was different from yours. I didn't have radiation or any other treatment right after the hysterectomy. I had a recurrence of the same Endometroid Adenocarcinoma two years later. I had been going to Mayo Clinic every 6 months for follow-up and my nurse practitioner in the GYNOncology department found a little polyp on my vaginal cuff that turned out to be the recurrence. I had 25 external pelvic radiation treatments and 2 internal (brachytherapy) treatments. Before I started the radiation the radiation oncology nurse and the radiation oncologist both spent a long time with me to explain any side effects I might have. I had only a few of the side effects and these were mild. I had some bladder irritation that felt a little like a bladder infection – not terrible but I could feel it. That happened about half way into the treatments. I had diarrhea occasionally and I took the recommended Imodium when that happened. I had some fatigue but only for a day or two. I had some fatigue for about 2-3 weeks after the radiation therapy was finished and that gradually went away.

The radiation oncologist told me that I should do some exercise every day He said that this would prevent me from feeling too fatigued and if I laid on the sofa all day I'd feel even more fatigued. Those were his exact words. He was so right about that. I walked every day by parking at the garage that was the farthest away from radiation oncology at Mayo so that meant I walked the length of the tunnel from one end to the other every time I had radiation therapy which was 5 days a week. I kept up with my strength training twice a week by meeting with a trainer virtually on my computer. I did yoga. I rested and took a little nap when I was tired but I didn't linger with those naps.

The question of how the cancer can spread is something to ask your radiation oncologist. They will have a very complete answer for you. Since your endometrial cancer is FIGO Grade 3 that means it's a more aggressive type and so it's possible that the radiation therapy is meant to be preventive.

I hope this helps. Will you let me know when your appointment is scheduled and what you find out?

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@naturegirl5

@cheriels. My situation was different from yours. I didn't have radiation or any other treatment right after the hysterectomy. I had a recurrence of the same Endometroid Adenocarcinoma two years later. I had been going to Mayo Clinic every 6 months for follow-up and my nurse practitioner in the GYNOncology department found a little polyp on my vaginal cuff that turned out to be the recurrence. I had 25 external pelvic radiation treatments and 2 internal (brachytherapy) treatments. Before I started the radiation the radiation oncology nurse and the radiation oncologist both spent a long time with me to explain any side effects I might have. I had only a few of the side effects and these were mild. I had some bladder irritation that felt a little like a bladder infection – not terrible but I could feel it. That happened about half way into the treatments. I had diarrhea occasionally and I took the recommended Imodium when that happened. I had some fatigue but only for a day or two. I had some fatigue for about 2-3 weeks after the radiation therapy was finished and that gradually went away.

The radiation oncologist told me that I should do some exercise every day He said that this would prevent me from feeling too fatigued and if I laid on the sofa all day I'd feel even more fatigued. Those were his exact words. He was so right about that. I walked every day by parking at the garage that was the farthest away from radiation oncology at Mayo so that meant I walked the length of the tunnel from one end to the other every time I had radiation therapy which was 5 days a week. I kept up with my strength training twice a week by meeting with a trainer virtually on my computer. I did yoga. I rested and took a little nap when I was tired but I didn't linger with those naps.

The question of how the cancer can spread is something to ask your radiation oncologist. They will have a very complete answer for you. Since your endometrial cancer is FIGO Grade 3 that means it's a more aggressive type and so it's possible that the radiation therapy is meant to be preventive.

I hope this helps. Will you let me know when your appointment is scheduled and what you find out?

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Thank you for the info! Means a lot, will let you know when my firs treatment will be. Hugs

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@cheriels

Thank you for the info! Means a lot, will let you know when my firs treatment will be. Hugs

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@cheriels I have been following your story, since it is similar to mine. I also recently had a total hysterectomy-BSO for a Stage 1, Grade 3 endometrial cancer. My sentinel lymph nodes were also negative, but I had significant myometrial invasion (10mm of 12mm) and low levels of lymphovascular invasion ("LVSI"). This makes it a "high-risk" cancer. Do you know about the extent of myometrial invasion and LVSI in yours?

I saw three different local doctors (no Mayo clinic) who recommended three different treatments (1: chemo + vaginal brachytherapy, 2: pelvic radiation, 3: chemo + pelvic radiation). I'm currently going for choice 1, and had my first round of chemo yesterday. I have an office visit with the radiation oncologist in a couple weeks.

The purpose of the follow-up treatment is to try to kill any cancer cells that may have escaped the primary tumor and are currently lurking somewhere, most likely in the vagina or in pelvic lymph nodes, but that haven't formed a tumor that's large enough to see yet on a PET-CT. Higher grade tumors are more likely to do that, and these stray cells can grow into tumors later.

I don't know if you want to cause trouble with your care team like I did with mine, but I'm happy that I insisted on having my tumor tested for mutations in the POLE gene. These are present in 10-20% of Grade 3 endometrial tumors, and tumors with this mutation have a MUCH better prognosis. In fact, the European treatment guidelines that went into effect almost 2 years ago categorize all POLE mutant tumors as "low risk" and recommend only observation as treatment. Of course no American doctor would recommend that, and POLE mutation testing is currently not "standard of care" in the US. I didn't try getting it covered by insurance, but it probably would have been a lost cause. However it was $450 at Stanford, and it definitely made me $450 happier, even though my result was negative (the bad result). I would have been really happy if it had been positive.

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@val64

@cheriels I have been following your story, since it is similar to mine. I also recently had a total hysterectomy-BSO for a Stage 1, Grade 3 endometrial cancer. My sentinel lymph nodes were also negative, but I had significant myometrial invasion (10mm of 12mm) and low levels of lymphovascular invasion ("LVSI"). This makes it a "high-risk" cancer. Do you know about the extent of myometrial invasion and LVSI in yours?

I saw three different local doctors (no Mayo clinic) who recommended three different treatments (1: chemo + vaginal brachytherapy, 2: pelvic radiation, 3: chemo + pelvic radiation). I'm currently going for choice 1, and had my first round of chemo yesterday. I have an office visit with the radiation oncologist in a couple weeks.

The purpose of the follow-up treatment is to try to kill any cancer cells that may have escaped the primary tumor and are currently lurking somewhere, most likely in the vagina or in pelvic lymph nodes, but that haven't formed a tumor that's large enough to see yet on a PET-CT. Higher grade tumors are more likely to do that, and these stray cells can grow into tumors later.

I don't know if you want to cause trouble with your care team like I did with mine, but I'm happy that I insisted on having my tumor tested for mutations in the POLE gene. These are present in 10-20% of Grade 3 endometrial tumors, and tumors with this mutation have a MUCH better prognosis. In fact, the European treatment guidelines that went into effect almost 2 years ago categorize all POLE mutant tumors as "low risk" and recommend only observation as treatment. Of course no American doctor would recommend that, and POLE mutation testing is currently not "standard of care" in the US. I didn't try getting it covered by insurance, but it probably would have been a lost cause. However it was $450 at Stanford, and it definitely made me $450 happier, even though my result was negative (the bad result). I would have been really happy if it had been positive.

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Hi
Have to think on that one. Just getting my mind set up for radiation treatments but thanks for the info!
Hugs

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