Radiation treatment after hysterectomy

Orchid65

Quick Two Cents

Thanks for writing.  Just wondering, was the second pathology report done by MD Anderson paid by your insurance or did you have to pay out of pocket?  Did you happen to find any studies that indicated that radiation therapy would prolong survival in earlier stage cancers?

Armywife

Orchid65 said:

Quick Two Cents

Thanks for writing.  Just wondering, was the second pathology report done by MD Anderson paid by your insurance or did you have to pay out of pocket?  Did you happen to find any studies that indicated that radiation therapy would prolong survival in earlier stage cancers?

Yes and Yes

Because my primary care doctor referred me to the second opinion, insurance covered the cost - that's how our military insurance worked.  Your mileage may differ.  And yes, I'm sure other ladies know more than I do, but at that point it seemed like the conventional wisdom was that early stage cancers are more likely to recur locally, and advanced stage cancers are more likely to have distant recurrence.  Radiation deals more with local recurrence.

MoeKay

Two Studies

Hi Orchid65, 

Regarding your question on studies on improved survival for early stage endometrial cancer patients who received radiation therapy, here are links to two I came across.

https://www.ncbi.nlm.nih.gov/pubmed/27793358?log$=activity:

Adjuvant radiation therapy is associated with improved overall survival in high-intermediate risk stage I endometrial cancer: A national cancer data base analysis.

See also:

https://www.ncbi.nlm.nih.gov/pubmed/31474587

A proposal for a new classification of "unfavorable risk criteria" in patients with stage I endometrial cancer.

These are just the two I came across after doing a quick Pubmed search.  I also recall a few years after I was treated in 1999 reading a study discussing that the authors' results showed a trend toward a survival benefit for certain subgroups of Stage 1 patients, but that, for various reasons, the study was underpowered to establish the benefit with statistical significance, or words to that effect.  That's quite an old study now, and I wasn't able to locate it online. 

 

 

Orchid65

MoeKay said:

Two Studies

Hi Orchid65, 

Regarding your question on studies on improved survival for early stage endometrial cancer patients who received radiation therapy, here are links to two I came across.

https://www.ncbi.nlm.nih.gov/pubmed/27793358?log$=activity:

Adjuvant radiation therapy is associated with improved overall survival in high-intermediate risk stage I endometrial cancer: A national cancer data base analysis.

See also:

https://www.ncbi.nlm.nih.gov/pubmed/31474587

A proposal for a new classification of "unfavorable risk criteria" in patients with stage I endometrial cancer.

These are just the two I came across after doing a quick Pubmed search.  I also recall a few years after I was treated in 1999 reading a study discussing that the authors' results showed a trend toward a survival benefit for certain subgroups of Stage 1 patients, but that, for various reasons, the study was underpowered to establish the benefit with statistical significance, or words to that effect.  That's quite an old study now, and I wasn't able to locate it online. 

 

 

Link to Two Studies

Hi MoeKay,

Thanks for the links to the two studies.  In the first one, the results showed that surgery and adjuvant radiation therapy was associated with a 4.1% improvement in 5 year overall survival vs. surgery alone in stage I high-intermediate risk stage I endometrial cancer.  Do you think the 4.1 % improvement in 5 year overall survival outweighs the side effects of the radiation therapy? 

MAbound

2nd study

It looks like you have at least 3 of the risk factors that would put you into the high risk category for early stage cancer: lymphovascular invasion, grade 2-3 mutation, and stage 1B. That is a really helpful study to help you make a decision. Moekay is a really good researcher in this group and seems to have a knack for finding what someone with misgivings needs. She was a big help to me when I was trying to talk myself out of radiation in 2016 by helping me to understand the criteria I had showing that radiation was worth the risk in my particular circumstances. I know I said that some people in early stages save radiation for recurrence, but I think this study is really helpful for defining when it would be ok to do that and when it would be riskier to skip it.

Orchid65

When to get radiation

My gynecology oncologist said I should have radiation therapy 6-8 weeks after surgery.  Does anyone know what the pros and cons are of waiting a little longer, a few weeks, a few months or even a year?

Orchid65

MAbound said:

2nd study

It looks like you have at least 3 of the risk factors that would put you into the high risk category for early stage cancer: lymphovascular invasion, grade 2-3 mutation, and stage 1B. That is a really helpful study to help you make a decision. Moekay is a really good researcher in this group and seems to have a knack for finding what someone with misgivings needs. She was a big help to me when I was trying to talk myself out of radiation in 2016 by helping me to understand the criteria I had showing that radiation was worth the risk in my particular circumstances. I know I said that some people in early stages save radiation for recurrence, but I think this study is really helpful for defining when it would be ok to do that and when it would be riskier to skip it.

Trying to Understand 2nd Study

Hi MAbound,

I was reading and trying to understand the 2nd Study, A proposal for a new classification of "unfavorable risk criteria" in patients with stage I endometrial cancer.  In conclusion, the "study showed that adjuvant radiation was associated with an overall survival benefit in patients meeting GOG-99 criteria only; however, no survival benefit was seen in patients meeting PORTEC-1 criteria only".  How do I know who meets the Gynecologic Oncology Group (GOG)-99 criteria and who meets the Post_Operative Radiation Therapy in Endometrial Carcinoma (PORTEC)-1 criteria?  What do the numbers in parenthesis mean? (HR=0.73; 95%Cl 0.60 to 0.89; p=0.002).

Thanks for any clarification you can provide.

Forherself

Orchid65 said:

Link to Two Studies

Hi MoeKay,

Thanks for the links to the two studies.  In the first one, the results showed that surgery and adjuvant radiation therapy was associated with a 4.1% improvement in 5 year overall survival vs. surgery alone in stage I high-intermediate risk stage I endometrial cancer.  Do you think the 4.1 % improvement in 5 year overall survival outweighs the side effects of the radiation therapy? 

Stage 1

Results encompass a wide range of bipsy results.   I would question such a broad category giving meanifngful reults.  This disease requires us to make very difficult decisions that have no right and wrong answer.  The link I shared about treatment actually recommend chemotherapy PLUS radiation for high grade stage 1B endometrial cancer. 

zsazsa1

Orchid65 said:

Trying to Understand 2nd Study

Hi MAbound,

I was reading and trying to understand the 2nd Study, A proposal for a new classification of "unfavorable risk criteria" in patients with stage I endometrial cancer.  In conclusion, the "study showed that adjuvant radiation was associated with an overall survival benefit in patients meeting GOG-99 criteria only; however, no survival benefit was seen in patients meeting PORTEC-1 criteria only".  How do I know who meets the Gynecologic Oncology Group (GOG)-99 criteria and who meets the Post_Operative Radiation Therapy in Endometrial Carcinoma (PORTEC)-1 criteria?  What do the numbers in parenthesis mean? (HR=0.73; 95%Cl 0.60 to 0.89; p=0.002).

Thanks for any clarification you can provide.

Hi, Orchid.  I haven't done

Hi, Orchid.  I haven't done this research in a while, and mine was serous, not endometrioid.  The GOG-99 was an older study, PORTEC-1 is an older study from a  different (mostly European, I think?) group.  It is possible to find these studies' protocols, inclusion criteria, and results on line.  The numbers in parentheses are statistical values.  How I wish I had had statistics relevant to clinical studies instead of all that stupid Calculus that I never, never needed.  Anyway, HR is hazard ratio, has to do with survival rates of the treated group as opposed to untreated group.   the CI is confidence interval, meaning that the value has a certain chance of falling within the proposed range.  And the p value has to do with how likely that something could have just happened by chance.  A p value of <0.05 is considered to be statistically significant, meaning that the odds of the results having happend just by chance, are less than 5%, or less than 1:20.  So a p value of 0.002 means the results are statistically signiificant.

zsazsa1

The earlier, the better. 

The earlier, the better.  Mine was delayed because my cuff was slow to heal.  The sooner you have it, the more effective it will be.

zsazsa1

I'm assuming they're only

I'm assuming they're only recommending vaginal brachytherapy.  I agree, because of the location, degree of invasion, grade, and LVSI, radiation is a good idea.

Forherself

Treatment studies

Here is another link to a study I haven't seen before.   

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5840256/

Orchid65

zsazsa1 said:

Hi, Orchid.  I haven't done

Hi, Orchid.  I haven't done this research in a while, and mine was serous, not endometrioid.  The GOG-99 was an older study, PORTEC-1 is an older study from a  different (mostly European, I think?) group.  It is possible to find these studies' protocols, inclusion criteria, and results on line.  The numbers in parentheses are statistical values.  How I wish I had had statistics relevant to clinical studies instead of all that stupid Calculus that I never, never needed.  Anyway, HR is hazard ratio, has to do with survival rates of the treated group as opposed to untreated group.   the CI is confidence interval, meaning that the value has a certain chance of falling within the proposed range.  And the p value has to do with how likely that something could have just happened by chance.  A p value of <0.05 is considered to be statistically significant, meaning that the odds of the results having happend just by chance, are less than 5%, or less than 1:20.  So a p value of 0.002 means the results are statistically signiificant.

Explanation

Hi zsazsa1,

Thanks for explaining what some of these acronyms mean.  I was searching on the internet for GOG-99 and PORTEC-1 and found a lot of interesting studies.  Thanks again.

Orchid65

Side effects

Does anyone know if the side effects for Brachtherapy (gastrointestinal problems, urge to urinate) or External Beam Radiation Therapy (diarrhea, fecal leakage, need to stay close to a toilet, limitations in daily activities due to bowel symptoms) go away after treatment or are they permanent?

BluebirdOne

Hi Orchid

I had 3 brachytherapy for my 1a Serous with LVSI. I agonized over the decision and looking back it was a waste of energy. I agreed with my doctors‘s recommendations of chemo and brachytherapy but still wanted to make sure. I read the studies available in 2018, and had the brachytherapy sandwiched between my chemo. The actual procedure is embarrassing but very easy to tolerate. I had some diarrhea but it went away after a month, it was never bad. I have other issues with bladder and bowel that I think are possible damage from surgery. The cliche “new normal“ would apply. Mostly I have issues with not receiving the “signals“ of a full bladder until it is almost too late. Also the same with  bowel movement. The issue started immediately after surgery,  so I know it was not chemo or radiation. The docs say that some nerves were most likely damaged during surgery, but it has gotten better over time. All in all I am glad I did everything to survive this horrible disease. I do not regret any of my treatment and frankly knowing what I know now about recurrence that I did not know in the moment gives me more confidence I did the right thing for me. 

Denise

 

jan9wils

Hi Orchid,

Hi Orchid,

I was diagnosed after my robotic hysterectomy in 2014 with Stage1B grade 2 endometriod adenocarcinoma with lymphovascular invasion. I had 28 external beam treatments and 3 brachys. I had pretty severe diarrhea every time I would eat for several months even though I was careful with my diet. I was teaching at the time and did not eat during the school day to try and control the diarrhea. I also took lomotil. Almost a year after my radiation I was still having gastro issues, though not as severe. After a consultation at a holistic pharmacy I began taking a good quality probiotic among other supplements. I improved almost immediately. I have recurred three times since, though all distant, never to my cuff. So maybe the radiation helped. If/when you have radiation I would suggest a good probiotic.

My gyn/onc sent me to MD Anderson for second opionion/evaluation. It was covered by my insurance. Incidently, my doctor at MDA recommended the exact treatment my gyn/onc had recommended for me.

Jan

Orchid65

BluebirdOne said:

Hi Orchid

I had 3 brachytherapy for my 1a Serous with LVSI. I agonized over the decision and looking back it was a waste of energy. I agreed with my doctors‘s recommendations of chemo and brachytherapy but still wanted to make sure. I read the studies available in 2018, and had the brachytherapy sandwiched between my chemo. The actual procedure is embarrassing but very easy to tolerate. I had some diarrhea but it went away after a month, it was never bad. I have other issues with bladder and bowel that I think are possible damage from surgery. The cliche “new normal“ would apply. Mostly I have issues with not receiving the “signals“ of a full bladder until it is almost too late. Also the same with  bowel movement. The issue started immediately after surgery,  so I know it was not chemo or radiation. The docs say that some nerves were most likely damaged during surgery, but it has gotten better over time. All in all I am glad I did everything to survive this horrible disease. I do not regret any of my treatment and frankly knowing what I know now about recurrence that I did not know in the moment gives me more confidence I did the right thing for me. 

Denise

 

Hi BluebirdOne,

Hi BluebirdOne,

Thanks for sharing your experience.  It's good to hear your bladder and bowel issues got better with time.  I thought the side effects might be permanent for life.  Did you have any recurrence of cancer?

Orchid65

jan9wils said:

Hi Orchid,

Hi Orchid,

I was diagnosed after my robotic hysterectomy in 2014 with Stage1B grade 2 endometriod adenocarcinoma with lymphovascular invasion. I had 28 external beam treatments and 3 brachys. I had pretty severe diarrhea every time I would eat for several months even though I was careful with my diet. I was teaching at the time and did not eat during the school day to try and control the diarrhea. I also took lomotil. Almost a year after my radiation I was still having gastro issues, though not as severe. After a consultation at a holistic pharmacy I began taking a good quality probiotic among other supplements. I improved almost immediately. I have recurred three times since, though all distant, never to my cuff. So maybe the radiation helped. If/when you have radiation I would suggest a good probiotic.

My gyn/onc sent me to MD Anderson for second opionion/evaluation. It was covered by my insurance. Incidently, my doctor at MDA recommended the exact treatment my gyn/onc had recommended for me.

Jan

Hi jan9wils

Hi jan9wils,

Thanks for your comments.  It is good to hear you found a probiotic that could help with the gastro issues.  Do you think you could have taken the probiotic during the radiation treatment to relieve the diarrhea?  Did you have any urinary problems?  Were you treated with chemotherapy for the three distant recurrences or did you use radiation?  I hope you are better now.

BluebirdOne

Orchid65 said:

Hi BluebirdOne,

Hi BluebirdOne,

Thanks for sharing your experience.  It's good to hear your bladder and bowel issues got better with time.  I thought the side effects might be permanent for life.  Did you have any recurrence of cancer?

NED as of 2/4/20

Thanks for asking. Thankfully, NED. My problems gradually subsided, but I am not the same. But very minor issues, nothing I can’t handle. As I like to say, I am still here! 

Denise 

Orchid65

BluebirdOne said:

NED as of 2/4/20

Thanks for asking. Thankfully, NED. My problems gradually subsided, but I am not the same. But very minor issues, nothing I can’t handle. As I like to say, I am still here! 

Denise 

Hi BluebirdOne

That is great news.  What are you doing to prevent recurrence?