MY FINAL PATHOLOGY - ANY INSIGHTS OR SUGGESTIONS?

woodstock99

Got my call this mroning from my GO.  Stage 1B Gradec 3. Tumor confined to uterus.  All lymph node negative. Shocked at how many nodes were taken and worried about lymphedema risk. 

I had BC and lymph nodoes removed on both sides 5+ years ago. 

I was told that I need 25 external radiation treatments to start in about 4 weeks but no later than 6 weeks.  No chemo. Assume this is NCI SOC? 

Anyone else with this diagnosis?  Any thoughts or opinions? 

I will get a 2nd &/or 3rd opinion but from what I have researched this is what I will likely be told by other GO's although seems ot difference of opinions about external vs targeted radiation? 

Interesting that radiation will reduce % of recuurenccfe but not survial rate. Actually reduces survival arte ebcause of side effects.  

I kind of expected this result as I knew tumor was high grade type 3 pre-op and doctor hasd used the "R" before.

I am relieved for stage is 1B (although would have been happier with 1(A) plus no sppread at this time. 

Kind of numb actually.  Not sure what to think or feel.  

Had my surgeyr June 10th - she does not want to see me until July 19th since I told her I am doing ok with recovery & then once every 3 months for surveillance with scans, etc.  

I asked her to do Foundation One testing just to have.  

Said pelvic floor exercises should wait.  

What else should I be asking?

Thanks.  

yetti

They didn't mention chemo ?  

They didn't mention chemo ?   I didn't have radiation.  6 chemo then . laproscopuc hysterectomy then 3 more chemo. Got 2nd opinion at CTCA. 4/18/ 19 Bc the Local onc wouldnt tell me how many more chemo. I went to CTCA where they did their own labs and ct scan and declared me NED  no evidence of disease. I had stage 4 B  Figo 2. Endometerial cancer. Dx in 2018 June  I. Was 2 years NED April 18 2021   Get that 2nd opinion if you don't agree with your first one ! ?? for you on your cancer journey !  LoL. Yetti 

woodstock99

yetti said:

They didn't mention chemo ?  

They didn't mention chemo ?   I didn't have radiation.  6 chemo then . laproscopuc hysterectomy then 3 more chemo. Got 2nd opinion at CTCA. 4/18/ 19 Bc the Local onc wouldnt tell me how many more chemo. I went to CTCA where they did their own labs and ct scan and declared me NED  no evidence of disease. I had stage 4 B  Figo 2. Endometerial cancer. Dx in 2018 June  I. Was 2 years NED April 18 2021   Get that 2nd opinion if you don't agree with your first one ! ?? for you on your cancer journey !  LoL. Yetti 

Thank you.  No chemo - just

Thank you.  No chemo - just external radiation for stage 1B/grade 3. 

Theskinnyscot

1b grade 3

This is the same results I had after my abdominal hysterectomy, I also had 20 lymph nodes removed. This was in October '19. I had 25 rounds of pelvic radiation and also no chemo. So far so good. I did have some swelling in my abdomen and thighs and was treated for lymphedema but it seems to have resolved and my pcp thinks it's because I was able to stay off my feet more than usual for the past year since I was furloughed from my job. 40+ years of 8 to 10 hrs on your feet in the hospitality industry will do a number on your legs regardles. Good wishes for continued healing ?

woodstock99

Theskinnyscot said:

1b grade 3

This is the same results I had after my abdominal hysterectomy, I also had 20 lymph nodes removed. This was in October '19. I had 25 rounds of pelvic radiation and also no chemo. So far so good. I did have some swelling in my abdomen and thighs and was treated for lymphedema but it seems to have resolved and my pcp thinks it's because I was able to stay off my feet more than usual for the past year since I was furloughed from my job. 40+ years of 8 to 10 hrs on your feet in the hospitality industry will do a number on your legs regardles. Good wishes for continued healing ?

Thanks fopr letting me know

Thanks fopr letting me know and glad you are doing well. I had BC and nodes rmeoved so did some preventative llymphedema therapy after that and will her again.  Assume you are on the 3 monthj check-up plan.  How bad was the radiation?  

Theskinnyscot

Hey Woodstock, i am now on

Hey Woodstock, i am now on 6monthply visits with onc/gyn. The radiation treatments per se are easy, only lasts about 5/ 10 mins depending on how long it takes them to get you in the correct position, totally painless except for having a full bladder! The best advice I got from the ladies here was to take a good probiotic as it helps reduce the chance of severe diarrhe. Only thing I found was that I became more easily fatigued as the treatments went on, good excuse for a nap when I got home. ☢️

MoeKay

Addressing your above comment about radiation and survival

Hi Woodstock,

While the benefit of radiation for stage 1 endometrial cancer in preventing recurrence has been well-established in the research over the years, to date, survival benefit has not been shown in prospective randomized trials.  But I am hesitant to conclude that there is absolutely no survival benefit to any subgroup of stage 1 patients from radiation.  I'm more inclined to be of the opinion that no studies have been designed to date that have shown a statistically-significant survival benefit.  For example, here's what the NCCN Clinical Practice Guidelines had to say on the issue:

Adjuvant RT:  Several phase III trials have assessed adjuvant therapy in patients with uterine-confined disease. In summary, the use of adjuvant RT improves pelvic control in patients with selected risk factors (and may improve PFS), but RT did not improve overall survival in any of the trials. However, many of these trials had limitations because most of the patients were low risk (ie, they had low-risk intrauterine pathologic risk factors). Thus, the trials were underpowered for patients with high-risk factors. It is recognized that in patients with uterine-confined disease, there is a spectrum of risk based on intrauterine pathologic findings. Adverse intrauterine pathologic risk factors include high-grade tumors, deep myometrial invasion (and consequently more advanced stage), LVSI, and serous or clear cell adenocarcinoma histologies.

See: https://www2.tri-kobe.org/nccn/guideline/archive/gynecological2014/english/uterine.pdf

I had both internal and external radiation for surgical stage 1c (now stage 1b due to subsequent changes in the staging system), grade 2 endometrioid adenocarcinoma in 1999.  Of the above adverse risk factors, I had both deep myometrial invasion (approximately 80%) and extensive LVSI.  I also had what was considered a fairly large tumor (4 cm.) and my tumor arose in the lower uterine segment, both of which have also been considered to be adverse risk factors.

 

 

woodstock99

MoeKay said:

Addressing your above comment about radiation and survival

Hi Woodstock,

While the benefit of radiation for stage 1 endometrial cancer in preventing recurrence has been well-established in the research over the years, to date, survival benefit has not been shown in prospective randomized trials.  But I am hesitant to conclude that there is absolutely no survival benefit to any subgroup of stage 1 patients from radiation.  I'm more inclined to be of the opinion that no studies have been designed to date that have shown a statistically-significant survival benefit.  For example, here's what the NCCN Clinical Practice Guidelines had to say on the issue:

Adjuvant RT:  Several phase III trials have assessed adjuvant therapy in patients with uterine-confined disease. In summary, the use of adjuvant RT improves pelvic control in patients with selected risk factors (and may improve PFS), but RT did not improve overall survival in any of the trials. However, many of these trials had limitations because most of the patients were low risk (ie, they had low-risk intrauterine pathologic risk factors). Thus, the trials were underpowered for patients with high-risk factors. It is recognized that in patients with uterine-confined disease, there is a spectrum of risk based on intrauterine pathologic findings. Adverse intrauterine pathologic risk factors include high-grade tumors, deep myometrial invasion (and consequently more advanced stage), LVSI, and serous or clear cell adenocarcinoma histologies.

See: https://www2.tri-kobe.org/nccn/guideline/archive/gynecological2014/english/uterine.pdf

I had both internal and external radiation for surgical stage 1c (now stage 1b due to subsequent changes in the staging system), grade 2 endometrioid adenocarcinoma in 1999.  Of the above adverse risk factors, I had both deep myometrial invasion (approximately 80%) and extensive LVSI.  I also had what was considered a fairly large tumor (4 cm.) and my tumor arose in the lower uterine segment, both of which have also been considered to be adverse risk factors.

 

 

Thank you Moe Kay.  I will

Thank you Moe Kay.  I will rea this study.  May I ask you if you have had an recurrence since 1999 when you did these treatments.  

MoeKay

No recurrence so far but did lots of worrying in first few years

I know you mentioned in another post that you are an overthinker.  I was a member of the overthinkers club too, especially for the first several years after completing treatment.  I didn't worry so much about the radiation, but my worry took the form of thinking I needed more treatment.  In 1999, chemotherapy was not standard of care for people with early stage endometrial cancer.  But being the compulsive overthinker I was, I did a lot of research and had myself convinced that my particular risk factors put me at an elevated risk for not only a local recurrence, but also for spread via the blood and lymphatic systems. 

Because you are scheduled to get several additional opinions, I suspect that things will become much clearer for you after input from those specialists.  Either they will agree with your gyn-onc, or they will have other opinions about how they believe you should proceed.  In my case, my second opinion gyn-onc in another state agreed with my first, and I really did trust my treating gyn-onc because he was so well-respected by everyone I asked--including other doctors, nurses, and patients.  He also had decades of experience and was able and willing to answer my seemingly endless questions.  I think right now you're under a lot of stress because you're overthinking, but you also don't have enough input to make a fully-informed decision.  Just remember that your doctors work for you, not vice versa, so they should be able to answer all of your questions to your satisfaction.

Good luck to you!

woodstock99

MoeKay said:

No recurrence so far but did lots of worrying in first few years

I know you mentioned in another post that you are an overthinker.  I was a member of the overthinkers club too, especially for the first several years after completing treatment.  I didn't worry so much about the radiation, but my worry took the form of thinking I needed more treatment.  In 1999, chemotherapy was not standard of care for people with early stage endometrial cancer.  But being the compulsive overthinker I was, I did a lot of research and had myself convinced that my particular risk factors put me at an elevated risk for not only a local recurrence, but also for spread via the blood and lymphatic systems. 

Because you are scheduled to get several additional opinions, I suspect that things will become much clearer for you after input from those specialists.  Either they will agree with your gyn-onc, or they will have other opinions about how they believe you should proceed.  In my case, my second opinion gyn-onc in another state agreed with my first, and I really did trust my treating gyn-onc because he was so well-respected by everyone I asked--including other doctors, nurses, and patients.  He also had decades of experience and was able and willing to answer my seemingly endless questions.  I think right now you're under a lot of stress because you're overthinking, but you also don't have enough input to make a fully-informed decision.  Just remember that your doctors work for you, not vice versa, so they should be able to answer all of your questions to your satisfaction.

Good luck to you!

Thank you.  I apprecaite

Thank you.  I apprecaite everyone's wisdomm, time and insights 

Kaleena

I had Grade 2 Stage 3A at the

I had Grade 2 Stage 3A at the time.  It was in my uterus, cervix and left ovary.   Did chemo over 6 months and then brachytherapy.  Because I scar easily, they did not suggest or should I say my radiologist oncologist was against pelvic radiation.  They removed 25 lymph nodes at that time.  Since then I have had probably another. 20 removed with 3 being positive.

First diagnosis was almost 16 years ago.

Also, I did get second opinions during one of my recurrences

Molly110

woodstock99 said:

Thank you.  No chemo - just

Thank you.  No chemo - just external radiation for stage 1B/grade 3. 

I was 1B grade three also --

I was 1B grade three also -- UPSC -- and I had six chemo treatments, with 5 brachytherapy concurrent with the chemo, which is the standard of care for UPSC. 

 

Best wishes,

Molly

Frances081920

Grade 3

I am a little surprised that no chemo is recommended, from what I have read, Grade 3 almost always requires chemo, regardless of stage

Primavera

Frances081920 said:

Grade 3

I am a little surprised that no chemo is recommended, from what I have read, Grade 3 almost always requires chemo, regardless of stage

I had grade 3

I only had 3 moderate brachitherapy. Grade 3, stage 1A. I was for sure expecting chemo but oncologist said no. It was endometrioid adenocarcinoma. Not sure if that had anything to do with it.

I got neoadjuvant chemo for the breast cancer that came afterwards, which was Stage IIB, grade 3 again. But lucked out and didn't need radiation, at least for now.

txtrisha55

I am surprized no Chemo.  I

I am surprized no Chemo.  I had 6 chemo rounds and NO radiation for Stage 3 C carcanomasarcoma (?) uterine cancer at UTSW in Dallas.   I would ask for a 2nd just to make sure.  Did they say why no chemo?

MAbound

MoeKay said:

No recurrence so far but did lots of worrying in first few years

I know you mentioned in another post that you are an overthinker.  I was a member of the overthinkers club too, especially for the first several years after completing treatment.  I didn't worry so much about the radiation, but my worry took the form of thinking I needed more treatment.  In 1999, chemotherapy was not standard of care for people with early stage endometrial cancer.  But being the compulsive overthinker I was, I did a lot of research and had myself convinced that my particular risk factors put me at an elevated risk for not only a local recurrence, but also for spread via the blood and lymphatic systems. 

Because you are scheduled to get several additional opinions, I suspect that things will become much clearer for you after input from those specialists.  Either they will agree with your gyn-onc, or they will have other opinions about how they believe you should proceed.  In my case, my second opinion gyn-onc in another state agreed with my first, and I really did trust my treating gyn-onc because he was so well-respected by everyone I asked--including other doctors, nurses, and patients.  He also had decades of experience and was able and willing to answer my seemingly endless questions.  I think right now you're under a lot of stress because you're overthinking, but you also don't have enough input to make a fully-informed decision.  Just remember that your doctors work for you, not vice versa, so they should be able to answer all of your questions to your satisfaction.

Good luck to you!

Thank goodness for overthinkers!

Overthinkers get such a bum rap from some people for being so, but then who do they turn to when they need the benefit of what overthinkers learn? The overthinker! You are a treasure on this board, Moekay, so overthink as much as you want and never apologise for it! I love reading your posts!

woodstock99

I had a few second opinions

I had a few second opinions and chemo was never recommended by any oncologists - only radiation.  I didn't ask why no chemo but hope and pray I was given the correct/optimal medical advise by 3 NCI medical centers.