Study: Pelvic radiation vs. chemo + brachytherapy

Tamlen

I came across this new study and thought I'd post it here in case it helps someone down the road.

"Superiority of VCB/C compared with pelvic RT was not demonstrated. Acute toxicity was greater with VCB/C; late toxicity was similar. Pelvic RT alone remains an effective, well-tolerated, and appropriate adjuvant treatment in high-risk early-stage endometrial carcinomas of all histologies."

Adjuvant Pelvic Radiation Therapy Versus Vaginal Brachytherapy Plus Paclitaxel/Carboplatin in High-Intermediate and High-Risk Early Stage Endometrial Cancer

zsazsa1

It's very difficult to decide

It's very difficult to decide what to do.  This study you have posted confirms the results of the GOG-249, which supported pelvic radiation alone.  The GOG-258's results led to the current recommendation of chemo plus vaginal brachytherapy.  The PORTEC-3 only weakly supported chemo plus radiation vs pelvic radiation alone.  Results varied according to stage and pathology.

Assuming we're talking serous or clear cell, if I were a Stage III or IV, I would go with chemo plus pelvic radiation - and I do not know in which order it would be best to do them!  If I were an adequately staged, very early Ia with no LVSI, confined only to the lining, I'd go with chemo plus vaginal brachytherapy.  I wouldn't recommend no adjuvant treatment, just total hysterectomy, for anyone, based upon the clear benefit of chemo and/or radiation from previous studies, unless the person were very elderly and unable to tolerate treatment.

But it's SO difficult to decide what to do!  I was not offered entry to any clinical trials at diagnosis, and every single one of us should have been randomized into clinical trials.  Chemo first, then radiation, vs radiation first, then chemo, vs simultaneous as long as is tolerated.  Whole pelvic vs vag brachy.  IMRT vs 4 field beam.  Proton beam vs standard.  Clinical trials are how we have made progress in treating other cancers.  

Forherself

I do not want to be randomized

I want to make the decisions about my care.  That is why they don't do randomized trials.   I think you feel the same way about your treatment.  You want to decide.   

Stage 1A uterine serous carcinoma has many different  descriptions.   ZsaZsa you are 1A yet you have LVSI.   I am 1A and on my hysterectomy specimen they found no malignancy at all.  Trying to tteat both of us the same would be wrong in my opinion.   These studies idnore the treament morbidiy, which is not insignificant for many women.   I have a 2-5% chance of recurring.  I have a 9% chance of getting breast cancer.   I am not going to have chemotherapy to prevent breast cancer.  I feel it is the same idea with my uterine cancer.   Am I scared, yes.   But I made my decision to have no treatment based on facts I was given.   Our friend is a pathologist.  He called the University and talked to the patholoigist who looked at all my slides.   Friend said I have about a 2% chance of recurrence.  My oncologist said she didn't think she would have any treatment if she were me.  Of course I understand her statment.  You never know until it is YOU sitting in the chair talking about YOUR life.  The studies talk about 1A with no residual malignancy in the hysterectomy specimen.  They say they do not know, but one study found 0 recurrence in a group of these women.  Each one is different.  And I have to find out for myself.  And this is how they find out if treatment is needed.

zsazsa1

Forherself said:

I do not want to be randomized

I want to make the decisions about my care.  That is why they don't do randomized trials.   I think you feel the same way about your treatment.  You want to decide.   

Stage 1A uterine serous carcinoma has many different  descriptions.   ZsaZsa you are 1A yet you have LVSI.   I am 1A and on my hysterectomy specimen they found no malignancy at all.  Trying to tteat both of us the same would be wrong in my opinion.   These studies idnore the treament morbidiy, which is not insignificant for many women.   I have a 2-5% chance of recurring.  I have a 9% chance of getting breast cancer.   I am not going to have chemotherapy to prevent breast cancer.  I feel it is the same idea with my uterine cancer.   Am I scared, yes.   But I made my decision to have no treatment based on facts I was given.   Our friend is a pathologist.  He called the University and talked to the patholoigist who looked at all my slides.   Friend said I have about a 2% chance of recurrence.  My oncologist said she didn't think she would have any treatment if she were me.  Of course I understand her statment.  You never know until it is YOU sitting in the chair talking about YOUR life.  The studies talk about 1A with no residual malignancy in the hysterectomy specimen.  They say they do not know, but one study found 0 recurrence in a group of these women.  Each one is different.  And I have to find out for myself.  And this is how they find out if treatment is needed.

Of course, one only enters a

Of course, one only enters a randomized clinical trial with informed consent.  And everyone must make their own decision.  Did you have serous on a biopsy, but then not found on hysterectomy?  Do they think that it was a very small polyp, that was removed with the biopsy, leaving nothing to be found on hysterectomy?

The fact is that chemo and/or radiation only marginally reduce the risk of recurrence.  So I can completely understand the choice to do no adjuvant treatment, if it was very very early stage.  It's not the choice I would have made, but it's definitely an understandable choice.

Forherself

zsazsa1 said:

Of course, one only enters a

Of course, one only enters a randomized clinical trial with informed consent.  And everyone must make their own decision.  Did you have serous on a biopsy, but then not found on hysterectomy?  Do they think that it was a very small polyp, that was removed with the biopsy, leaving nothing to be found on hysterectomy?

The fact is that chemo and/or radiation only marginally reduce the risk of recurrence.  So I can completely understand the choice to do no adjuvant treatment, if it was very very early stage.  It's not the choice I would have made, but it's definitely an understandable choice.

My initial diagnosis

was endometrail intrepithelial neoplasm.   From  a polyp.   And then upgraded to endometrial intraepithelial carcinoma at the University hospital pathology.   And then scans normal, and hysterectomy salpingo oophorectomy, no malignancy found, sentinel nodes, green dye injected into cervix identified all nodes, no more taken. Omental sampling negative.  Pelvic wash negative.  Nodes negative.  Yes 1A does not show any different rate of recurrence after treatment.  But that is why I can't see randomized trials.   We both have different opinions, and I would not want to be assigned to a different group.  Retrospective studies will probably be the only answer for this rare turmor.   I think too, that pahtologists are identifying 4 sets of mutations that give more information about prognosis than the staging.  There seems to be a lot of recent studies about Uterine serous carcinoma.   I read every one.

jjtrim

Stage 1a UPSC confined to a polyp

My mother was diagnosed a stage 1a UPSC, confined to an endometrial polyp, no myometrial invasion, no LVSI, negative omentum, nodes, etc - a clean bill of health by all reports.  She had her hysterectomy and was told no chemo or brachy would be necessary.  She was not given an option. No one explained benefits/risks, etc - just told to go on about her life with 3 month CA125 checks.  She recurred after 14 months.  She now has widepread metastasis to multiple lymph nodes, peritoneum, omentum and a suspicious nodule in her lung - Stage IVb. If I could go back I would beg everyone who would listen to to get the adjuvant treatment.  

I certainly respect everyone’s opinion and informed choices. I just wanted to share my mother‘s unfortunate experience. 

BluebirdOne

jjtrim said:

Stage 1a UPSC confined to a polyp

My mother was diagnosed a stage 1a UPSC, confined to an endometrial polyp, no myometrial invasion, no LVSI, negative omentum, nodes, etc - a clean bill of health by all reports.  She had her hysterectomy and was told no chemo or brachy would be necessary.  She was not given an option. No one explained benefits/risks, etc - just told to go on about her life with 3 month CA125 checks.  She recurred after 14 months.  She now has widepread metastasis to multiple lymph nodes, peritoneum, omentum and a suspicious nodule in her lung - Stage IVb. If I could go back I would beg everyone who would listen to to get the adjuvant treatment.  

I certainly respect everyone’s opinion and informed choices. I just wanted to share my mother‘s unfortunate experience. 

I am so sorry that she has to go through this.

It seems that many of us are educated too late about protocols for each stage and type. We seek out the best oncologists recommended by docotors or people we trust and only later learn about all the options we were denied or not informed about. My initial  highly regarded gyne turned out to frankly be a complete idiot who removed most of my tumor through hysteroscopy, told me it was just a large fibroid but he took out as much as was allowed for the procedure. Assured me it was just a fibroid without knowing the pathology. Idiot called me two days later with his hair on fire that it was UPSC, (thankfully later staged at stage 1a, but with LVSI).  Made me wait almost 6 weeks to get the biopsy. On my own I contacted Mayo and had the surgery in a week. (The gyne onc the idiot referred me to was almost as bad as he was.) The docs at Mayo were appalled by my prior treatment. So bad doctors, missed opportunities abound and we are our own best advocates . I truly hope your mother gets the treatment she deserves. We are pulling for her. 

xoxo

Denise

SF73

jjtrim said:

Stage 1a UPSC confined to a polyp

My mother was diagnosed a stage 1a UPSC, confined to an endometrial polyp, no myometrial invasion, no LVSI, negative omentum, nodes, etc - a clean bill of health by all reports.  She had her hysterectomy and was told no chemo or brachy would be necessary.  She was not given an option. No one explained benefits/risks, etc - just told to go on about her life with 3 month CA125 checks.  She recurred after 14 months.  She now has widepread metastasis to multiple lymph nodes, peritoneum, omentum and a suspicious nodule in her lung - Stage IVb. If I could go back I would beg everyone who would listen to to get the adjuvant treatment.  

I certainly respect everyone’s opinion and informed choices. I just wanted to share my mother‘s unfortunate experience. 

I know how you feel. My tumor

I know how you feel. My tumor was of garden variety. Endometrioid histology, Grade 1, Stage 2 but with positive pelvic wash (scant number of cells). My oncologist did not recommend the adjuvant treatment and honestly I was relieved to hear that. I did not seek a second opinion, instead I found an obscure paper from Japan that discussed how positive pelvic wash is not informative in staging of endometrial cancer but is for ovarian cancer. Only three months later, I had a recurrence (a 6 cm tumor that swallowed my right ovary and microscopic spread in the omentum) I was a healthy 43 year woman at the time of diagnosis with an unremarkable family history. I think my oncologist took a calculated risk and hoped that things would work out and it did not. I also wish I was a bit more skeptical and kept looking for alternative opinions instead of doing research to confirm that what I received was good news. Best of luck in your mother's treatment. Please don't feel guilty. You guys made the best decision with the data you had at the time. 

zsazsa1

SF73 said:

I know how you feel. My tumor

I know how you feel. My tumor was of garden variety. Endometrioid histology, Grade 1, Stage 2 but with positive pelvic wash (scant number of cells). My oncologist did not recommend the adjuvant treatment and honestly I was relieved to hear that. I did not seek a second opinion, instead I found an obscure paper from Japan that discussed how positive pelvic wash is not informative in staging of endometrial cancer but is for ovarian cancer. Only three months later, I had a recurrence (a 6 cm tumor that swallowed my right ovary and microscopic spread in the omentum) I was a healthy 43 year woman at the time of diagnosis with an unremarkable family history. I think my oncologist took a calculated risk and hoped that things would work out and it did not. I also wish I was a bit more skeptical and kept looking for alternative opinions instead of doing research to confirm that what I received was good news. Best of luck in your mother's treatment. Please don't feel guilty. You guys made the best decision with the data you had at the time. 

Research papers from Japan are unreliable.  They sometimes report unbelievably good results, that just aren't true.  This is known in the medical research community.

Forherself

jjtrim said:

Stage 1a UPSC confined to a polyp

My mother was diagnosed a stage 1a UPSC, confined to an endometrial polyp, no myometrial invasion, no LVSI, negative omentum, nodes, etc - a clean bill of health by all reports.  She had her hysterectomy and was told no chemo or brachy would be necessary.  She was not given an option. No one explained benefits/risks, etc - just told to go on about her life with 3 month CA125 checks.  She recurred after 14 months.  She now has widepread metastasis to multiple lymph nodes, peritoneum, omentum and a suspicious nodule in her lung - Stage IVb. If I could go back I would beg everyone who would listen to to get the adjuvant treatment.  

I certainly respect everyone’s opinion and informed choices. I just wanted to share my mother‘s unfortunate experience. 

I am very sorry your mother

Is going through this.  I am sorry that she was not given more information about her treatment options.  Your picture is beautiful.  She is too young for all this.  My oncologist said that serous carcinoma can recur even with chemo and radiation.  It is the hardest part of this disease.  No one knows enough about it.    I have included a link from MDAnderson cancer clinic on their recommendations.  I hope your mother responds well to treatment.

 

https://www.mdanderson.org/content/dam/mdanderson/documents/for-physicians/algorithms/cancer-treatment/ca-treatment-endometrial-web-algorithm.pdf

jjtrim

Forherself said:

I am very sorry your mother

Is going through this.  I am sorry that she was not given more information about her treatment options.  Your picture is beautiful.  She is too young for all this.  My oncologist said that serous carcinoma can recur even with chemo and radiation.  It is the hardest part of this disease.  No one knows enough about it.    I have included a link from MDAnderson cancer clinic on their recommendations.  I hope your mother responds well to treatment.

 

https://www.mdanderson.org/content/dam/mdanderson/documents/for-physicians/algorithms/cancer-treatment/ca-treatment-endometrial-web-algorithm.pdf

Thank you for the kind words

Thanks to everyone.  It's hard.  I'm having a hard time. 

The flow chart from MD Anderson is especially helpful.  I may take it to the oncologist to ask why adjuvant therapy was not presented as an option.  

 

Thanks again to everyone.  Health and healing to you all!

evolo58

BluebirdOne said:

I am so sorry that she has to go through this.

It seems that many of us are educated too late about protocols for each stage and type. We seek out the best oncologists recommended by docotors or people we trust and only later learn about all the options we were denied or not informed about. My initial  highly regarded gyne turned out to frankly be a complete idiot who removed most of my tumor through hysteroscopy, told me it was just a large fibroid but he took out as much as was allowed for the procedure. Assured me it was just a fibroid without knowing the pathology. Idiot called me two days later with his hair on fire that it was UPSC, (thankfully later staged at stage 1a, but with LVSI).  Made me wait almost 6 weeks to get the biopsy. On my own I contacted Mayo and had the surgery in a week. (The gyne onc the idiot referred me to was almost as bad as he was.) The docs at Mayo were appalled by my prior treatment. So bad doctors, missed opportunities abound and we are our own best advocates . I truly hope your mother gets the treatment she deserves. We are pulling for her. 

xoxo

Denise

That is the problem, I think

I don't know just how knowledgeable gyno-oncos are re Type 2 cancers. If you think about it, they obviously don't get many of them. I also wonder if they have any knowledge of endometrioid cancer that falls outside the garden variety aspects.

Personally, I think the doctor I fired (and the one who did my surgery) was a little too cavalier about the surgery as well. I was staged 4B, but had NO lymph node removal whatsoever, and when the last scan indicated a strong concern of lingering cancer in my lower right quadrant, opted not to give me extra chemo or even radiation, but treat it as a watch and wait. Needless to say, that didn't quite work too well!

My PCP recommended the gyno-onco extremely highly, and she has good doctor ratings (though I do believe one or two negative ones that I'm pretty darn sure were there were snipped out ... I don't see them anymore). But she just not might have been the best choice for rare uterine cancers. Also, she had a horrible bedside manner. (That was in the now-gone reviews.) Awful. 

IMO, with any Type 2, I believe a few preventative chemos/radiation treatments might not be a bad option. The Type 2s are sneaky little sonofaguns. And ditto for any Type 1 that had any problems.

EDIT ... I should add that many doctors and papers do NOT recommend radiation for first-line Stage 4Bs. That is not even an option. It was not for me.