stage 1a grade 3 endometrial clear cell treatment options

caedmon22

hi all,

i'm new here. i was diagnosed with endometrial cancer 2/7/15 and had an "everything out plus nodes" daVinci hysterectomy 3/16. my path report from that was stage 1a grade 3, clear cell. nodes clear and pelvic wash clear, but invasion of the uterine lymph. first pass, my surgeon thought a combo of chemo and brachy radiation would do it, but the tumor board met (on my birthday!) and are recommending external pelvic radiation. i have a consult scheduled w/rad onc on monday and with chemo onc on tuesday. she's going to talk with them both prior to see what their hit is re best adjuvant therapies going forward. apparently this is such a rare cancer there aren't a lot of studies to help guide what comes next. i'm still in shock (obviously) and so far every turn on this path has been "worst case scenario." just looking for your experience, knowledge, insight. thanks in advance.

Virgil90012

Caedmon22

Unfortunately, I don't know much about your type of cancer but one of the ladies, Notimeforcancer, who frequently posts has shared her knowledge of the different types of Uterine cancers.  I found it very helpful.  If you haven't seen it, look for the link titled "Serous papillary endometrial Adenocarcinoma vs other uterine cancers".  It should be the fourth or fifth link on the uterine cancer page.  I hope your appointments next week will provide you with piece of mind and a plan of action.  

Hybridspirits

treatment

did you have lymphatic invasion?  my understanding is that means not in your lymph nodes but on your way.  There are protocols i believe based on the size of the tumor if your cancer,  lymphatic invasion,  agressiveness, etc..  I had stage 1A grade 3, but not any rare types and originally i was to have all three including external radiation.  i had a consult at Dana Farber for oncology and my local radiologist suggested i have a consult on radiation.  They didn't suggest external soley on the number of lymph nodes removed (72 for me)  so i only had internal for now

do you know how many lymph nodes were tested.  I belive this helps determine the thoroughness of checking if you have lymphatic invasion

however when in doubt you could always check with another center for a second opinion.  Mine redid the paythology,  i met with an oncologist who spoke to my local oncologist and then had a follow consult with the head of radiology.

hope this helps

 

Fayard

I had Creal Crell

I had Creal Crell Adenocarcinoma. All llymphnodes were clear, but tumor invaded cevix wall.

So, my diagnosis was Stage 2, Grade 3, Clear Cell Adenocarcinoma.

I am not a doctor, but I wonder why yours was stage I, if some lymphs were infected. I though stage I was when tumor was vonfined.

Either way, as some else just said, there are protocols. Mine called only for chemo. My onco said we had to attach it aggresively, since clear cells are very agressive. I had 18 treatments of carbo and taxol.

I hope this helps!

caedmon22

thanks so much, all of you,

thanks so much, all of you, for responding. very helpful.

w/respect to staging and lymph invasion -- it's stage 1a b/c i had a clean pelvic wash and margins, and the tumor had invaded well less than half of the uterine wall. my surgeon only took 2 nodes, and both were clear. however, they did find cells in the uterine lymph canals (my surgeon described that as "hanging around the freeway onramp" ). the tumor board recommended 5 weeks of external beam radiation and some brachy therapy (i'm spacing out on exactly how many) but no chemo. my surgeon had me make appointments with both radiology and medical oncs, but after the tumor board discussion she called both of them to get their hit on it. they both agreed with the tumor board. so radiation it is.

i met with the rad onc on monday and it's a really good group. my doc is mayo-clinic trained and very seasoned. he explained that it was entirely possible the surgery got it all, but b/c of the low sampling of lymph nodes and the fact that it was in the lymph inside the uterus, we can't be sure. and clear cell is very aggressive. he said doing the radiation would reduce the chances of recurrence (statistically anyway) from 20% to 10%...so that's pretty good odds.

the insurance stuff is still processing, so i won't have my first appointment until next week sometime, and then the week after that we'll start. kinda glad there's a delay. it gives my body some more time to heal from the hysterectomy before heading into radiation land.

big hugs and best blessings to each and all of you!

Sandy3185

caedmon22 said:

thanks so much, all of you,

thanks so much, all of you, for responding. very helpful.

w/respect to staging and lymph invasion -- it's stage 1a b/c i had a clean pelvic wash and margins, and the tumor had invaded well less than half of the uterine wall. my surgeon only took 2 nodes, and both were clear. however, they did find cells in the uterine lymph canals (my surgeon described that as "hanging around the freeway onramp" ). the tumor board recommended 5 weeks of external beam radiation and some brachy therapy (i'm spacing out on exactly how many) but no chemo. my surgeon had me make appointments with both radiology and medical oncs, but after the tumor board discussion she called both of them to get their hit on it. they both agreed with the tumor board. so radiation it is.

i met with the rad onc on monday and it's a really good group. my doc is mayo-clinic trained and very seasoned. he explained that it was entirely possible the surgery got it all, but b/c of the low sampling of lymph nodes and the fact that it was in the lymph inside the uterus, we can't be sure. and clear cell is very aggressive. he said doing the radiation would reduce the chances of recurrence (statistically anyway) from 20% to 10%...so that's pretty good odds.

the insurance stuff is still processing, so i won't have my first appointment until next week sometime, and then the week after that we'll start. kinda glad there's a delay. it gives my body some more time to heal from the hysterectomy before heading into radiation land.

big hugs and best blessings to each and all of you!

Hi Caedmond,, Did your Dr

Hi Caedmond,, Did your Dr tell you why he doesn't recommend chemo? Clear Cell is such an aggressive cancer, I don't understand why he is relying solely on radiation. I would ask him again, or perhaps get a second opinion. My understanding is that chemo has a much better chance of killing all the wayward cancer cells anywhere in your body. Just my two cents, Sandy

Hybridspirits

Sandy3185 said:

Hi Caedmond,, Did your Dr

Hi Caedmond,, Did your Dr tell you why he doesn't recommend chemo? Clear Cell is such an aggressive cancer, I don't understand why he is relying solely on radiation. I would ask him again, or perhaps get a second opinion. My understanding is that chemo has a much better chance of killing all the wayward cancer cells anywhere in your body. Just my two cents, Sandy

chemo/radiation

i believe the difference between Chemo and radiation:

radiation will hit a specific spot the radiation is directed to and nothing else.  For my lymphatic invasion it was decided after a consult with Dana Farbers head of radiation to not do it as i had 72 lymph nodes removed and no cancer.  However,  the reason I was given for chemo is that even though mine was 1A grade 3 not MMT/Clear cell,  least agressive of the agressive was that it's purpose was to attack microscopic cancer cells that can't be seen,  more of preventive

 

i do find it interesting all the different protocols used by different Dr's and hospitals all with their own success rate.

My oncoogist has told me repeatedly treating cancer is an art not always a science

 

 

SettledSue

I have clear cell, too

Caedmon, I'm sorry you have this diagnosis. It is very scary, especially when you look things up on the Internet. I was diagnosed in March of 2012. I was stage 2 since it had spread to my cervix. I had 33 lymph nodes removed when I had my hysterectomy in April 2012 and no cancer was found in them. I had 3 brachytherapy treatments first and then six chemo treatments. I had a recurrence in my vagina in less than a year and then had 28 external radiation treatments. There has been no sign of cancer now in almost two years. Good luck to you with your treatments. 

caedmon22

SettledSue said:

I have clear cell, too

Caedmon, I'm sorry you have this diagnosis. It is very scary, especially when you look things up on the Internet. I was diagnosed in March of 2012. I was stage 2 since it had spread to my cervix. I had 33 lymph nodes removed when I had my hysterectomy in April 2012 and no cancer was found in them. I had 3 brachytherapy treatments first and then six chemo treatments. I had a recurrence in my vagina in less than a year and then had 28 external radiation treatments. There has been no sign of cancer now in almost two years. Good luck to you with your treatments. 

hi settledsue

hi sue. thanks for sharing your experience with me. it's good to know somebody else with the diagnosis who has been through treatment etc. and is doing well (although i am sorry you had it too!!!!). i'm halfway through the external rad (14 of 25 down) and then will have two brachy. i LOVE my rad/onc. love love love my rad/onc. really at each stage of this journey i've found myself in wonderful hands. i'm in week 3 and the side effects have kicked in more strongly. not fun, but i keep reminding myself it's in a good cause and this too shall pass. you're so right about internet research and clear cell. i don't do it any more. scared myself badly enough already .

caedmon22

Hybridspirits said:

chemo/radiation

i believe the difference between Chemo and radiation:

radiation will hit a specific spot the radiation is directed to and nothing else.  For my lymphatic invasion it was decided after a consult with Dana Farbers head of radiation to not do it as i had 72 lymph nodes removed and no cancer.  However,  the reason I was given for chemo is that even though mine was 1A grade 3 not MMT/Clear cell,  least agressive of the agressive was that it's purpose was to attack microscopic cancer cells that can't be seen,  more of preventive

 

i do find it interesting all the different protocols used by different Dr's and hospitals all with their own success rate.

My oncoogist has told me repeatedly treating cancer is an art not always a science

 

 

hybrid i agree!

hi hybrid -- i think your oncologist nailed it. it's got to be a combination of art and science. at a certain point we have to trust and move forward. at least that's my orientation to all this. i think it's particularly tricky with clear cell. my surgeon told me there are very few studies out there b/c clear cell so rare in uterine cancer. aggressive. and rare. and unpredictable. this whole thing has been a major lesson for me -- phd in Be Here Now .

caedmon22

Sandy3185 said:

Hi Caedmond,, Did your Dr

Hi Caedmond,, Did your Dr tell you why he doesn't recommend chemo? Clear Cell is such an aggressive cancer, I don't understand why he is relying solely on radiation. I would ask him again, or perhaps get a second opinion. My understanding is that chemo has a much better chance of killing all the wayward cancer cells anywhere in your body. Just my two cents, Sandy

hi sandy, yes he did

hi sandy -- thanks for your concern. the tumor board, the surgeon,and my rad onc all agreed. at first my surgeon thought they might hit it with 3 brachy and 3 chemo treatments, but the tumor board was unanimous re going the radiation route. my surgeon had booked me for consults with a rad onc and a med onc, and when the tumor board came in with that recommended she consulted with them both to see what they thought. both agreed with the tumor board. the reason is it's an early stage with no evidence of metastases anywhere. surgically i'm considered "cured." (with of course the caveat that i might turn out not to be. nobody is making any guarantees). this is preventive.

welch_1985

caedmon22 said:

hi settledsue

hi sue. thanks for sharing your experience with me. it's good to know somebody else with the diagnosis who has been through treatment etc. and is doing well (although i am sorry you had it too!!!!). i'm halfway through the external rad (14 of 25 down) and then will have two brachy. i LOVE my rad/onc. love love love my rad/onc. really at each stage of this journey i've found myself in wonderful hands. i'm in week 3 and the side effects have kicked in more strongly. not fun, but i keep reminding myself it's in a good cause and this too shall pass. you're so right about internet research and clear cell. i don't do it any more. scared myself badly enough already .

Outcome of treatment

Just diagnosed stage 1a, grade 3 clear cell. Recommendation: external radiation or bracy w/chemo. caedmon22 I see that you chose external radiation. Would you be willing to provide update on your status / treatment? I am reading studies that show long-term negative impact on bowel/bladder control with external radiation. I have about 3 weeks to decide on a treatment. Meeting with rad onc/medical onc in next 2 weeks.

ConnieSW

Hi, Welch

Caedmon decided to leave the group a couple years ago. We've  had lots of others who had external radiation so I'm sure someone will be here to help soon. Glad you found us. 

welch_1985

ConnieSW said:

Hi, Welch

Caedmon decided to leave the group a couple years ago. We've  had lots of others who had external radiation so I'm sure someone will be here to help soon. Glad you found us. 

thank you for your reply. 
 

thank you for your reply. 

 

Soup52

I was diagnosed with clear

I was diagnosed with clear cell 3C in 2015.my treatment started with surgery, then external radiation, 3 internal and finally 6 rounds of chemo. I have been clear since August 2016. Yes I have bowel problems buys it’s hRd to determine whether from multiple abdominal surgeries, radiation, or chemo or combo of all. Yes it’s frustrating but so far has been worth it. Yes, it’s an individual choice. For me it’s been the right one despite other problems.

Mountainview62

Diagnosed on 1-25th Endometrial cancer

Hello all.

My surgery (total hysterectomy plus lymph nodes) is scheduled for 2-19th.(robbot de vinci). Everything appears to moving so fast. Would someone help me to understand, what's happening and will happen? II wa not sure what to ask the surgeon and my referring physician.

 

Thank you

 

welch_1985

Soup52 said:

I was diagnosed with clear

I was diagnosed with clear cell 3C in 2015.my treatment started with surgery, then external radiation, 3 internal and finally 6 rounds of chemo. I have been clear since August 2016. Yes I have bowel problems buys it’s hRd to determine whether from multiple abdominal surgeries, radiation, or chemo or combo of all. Yes it’s frustrating but so far has been worth it. Yes, it’s an individual choice. For me it’s been the right one despite other problems.

Treatment

Hi, Soup52

Thank you for your response. Surgery completed 3 weeks ago and now being presented 2 treatment options: external beam+brachy radiation therapy or brachy radiation therapy+chemo. I am surprised that my searches haven't turned up any trials/studies more recent than 2004. A study of brachy+chemo started October 2017 so no results yet.