How is recurrent adenocarcinoma different than MMMT and UPSC?

oldbeauty

I've just been diagnosed with recurrent endometrial cancer. My original treatment was in 2005 with hysterectomy and pelvic radiation. I was Stage IC, FIGO Grade 2. I have been encouraged to considered myself "cured," even immediately after my first treatment. I had regular exams and chest x-ray annually until 2010, and this has caught me by surprise.

My cancer has recurred in 2 para-aortic nodes and 1 supraclavicular node. In addition, there are numerous lesion in both lungs, some of which have cavitated. The lung lesions cannot safely be biopsied. I just finished radiotherapy to shrink the para-aortic nodes to relieve pain in my hip, groin and thigh because the one node was compressing a muscle complex. And because my cancer is ER and PR responsive, I am now on 400 mg of progesterone daily. I will have a new CT scan in August to see what the hormone therapy has accomplished. If it has shrunk both the supraclavicular node and affected the lung lesions, we will know that I have metastatic disease. Chemotherapy was thought to be unecessarily aggresssive/toxic at this stage when we are still questioning what's going on in my lungs. I wasted at least a year with sports medicine doctors and physical therapists trying to figure out what my hip/leg pain was. It wasn't until I insisted that we MRI a wider field that we found the culprit cancer. But that is water under the bridge.

I've read a lot of the threads on this board and am encouraged that so many people are living a satisfying life with a disease that is not curable but is treatable. What is unclear to me is how what I read on the board relative to chemo "cocktails" and the like is relevant to adenocarcinoma.

Can any of the more knowledgeable posters clue me in to how to determine what is relevant to my situation and what may not be?

Thanks.
Oldbeauty

P.S. when "previewing" this message, it shows I created it in 1970!! It's May 2012.

daisy366

Hi Beauty - forget the "old"
Sorry you are dealing with recurrence. It really stinks!!

At this stage, I don't think it matters how your cancer differs from MMMT or UPSC. I think docs just take things as they come and our original diagnosis is, like you say, water under the bridge. Cancer changes with time and each tumor can be a mixed bag. I think docs do the best they can to figure things out and use their bag of tricks to handle the disease.

I have UPSC diagnosed in 2008 and dealing with second recurrence. I also had positive nodes in supraclavicular (treated with combo of chemo and low dose radiation) and now hormone therapy for positive paraortic nodes. It sounds like we had similar treatment plans. My doc does not believe in over-treating which I appreciate.

It's a shame you wasted time with those other docs. My doc told me that anything that lasts more than TWO WEEKS that I need to tell him about. That always rings in my head.

I'm glad you found us. Lots of good support and information here. Hang in there. We are here for you.

Mary Ann

Sara Zipora

Pain etc... Sports med
So sorry to hear. I have had two recurrences since Dx and surgery July 2010. Most recently IMRT radiation 28 times. Now almost three months post radiation and having PET Tuesday. Had two rounds of chemo, carbo tax, then carbo doxil for six months then Meggace for seven months, in retrospect all the while second tumor was growing, after I felt constipation and had PTSD, post traumatic stress disorder reactions, as constipation was only symptom before initial dx Stage IX grade 3. After second tumor surgery They gave me Gemzar which my 'compromised' white and red blood cells couldn't take, then I had the radiation.
I truly feel that the surgeries kept the cancer at bay and the chemo only wrecked my bone marrow. But then I'm not an onco.
Now I'm very anxiously awaiting PET results as two weeks agos CT showed a possibly lung 'spot'. Organs ok up to now.

My question to you is do you think I should have an MRI too to look for other stuff, do have sciatc nerve pain bu, my Dx, but i have been flying a bunch, Hong Kong on the way to Australia, LA! nY and now back home in Israel.

Keep fighting and thanks for your very informative post.

Sara

snowbird_11

You asked about difference
You asked about difference in type of cancer relative to recurrences - the main issue can be the expected nature of the metastasized tumors and the types of treatments they may better respond to. Unfortunately, any grade of cancer can metastasize, it's just that higher grade cells may replicate faster causing tumors to grow faster and therefore become evident sooner. As well, different types can vary in the nature of the spread of disease with UPSC following ovarian or fallopian tube cancer patterns.

It may well be that some cancerous cells had already made there way to distant locales but were not detectable back at time of original diagnosis and remained somewhat indolent. Did you have any biopsies done to confirm this was indeed your endometrial cancer recurring? With the hormone sensitivity of your cancer you may be able to get some control without having to resort to the rigors of chemotherapy. My gyn-onc is very much in the 'less is more' mindset when it comes to chemo with hopes of saving the thrashing of bone marrow for as long as possible.

Sending positive thoughts for success with your progesterone therapy.
Annie

oldbeauty

daisy366 said:

Hi Beauty - forget the "old"
Sorry you are dealing with recurrence. It really stinks!!

At this stage, I don't think it matters how your cancer differs from MMMT or UPSC. I think docs just take things as they come and our original diagnosis is, like you say, water under the bridge. Cancer changes with time and each tumor can be a mixed bag. I think docs do the best they can to figure things out and use their bag of tricks to handle the disease.

I have UPSC diagnosed in 2008 and dealing with second recurrence. I also had positive nodes in supraclavicular (treated with combo of chemo and low dose radiation) and now hormone therapy for positive paraortic nodes. It sounds like we had similar treatment plans. My doc does not believe in over-treating which I appreciate.

It's a shame you wasted time with those other docs. My doc told me that anything that lasts more than TWO WEEKS that I need to tell him about. That always rings in my head.

I'm glad you found us. Lots of good support and information here. Hang in there. We are here for you.

Mary Ann

Thank you, MaryAnn. Yes, it
Thank you, MaryAnn. Yes, it is unfortunate my time was wasted. Curiously, the two times I had sudden onset of excruciating pain MRIs did eventually discover fractures in my sacrum (once) and sacroilliac joint (once). These were insufficiency fractures due to radiation effects. The docs always talked about how complex this area was relative to juncture of bones, muscles, nerves, etc. which sounded reasonable, and the pain always went away. Some months ago the pain was near constant and I knew I needed to do some serious investigation. I am temporarily residing outside the US which adds somewhat to my unease. I have good health insurance where I am and I have no fear that the medicine is not up to par with the US. Anyway, after my initial shock and upset I am going with the flow. I won't know more until August. In the meantime, I'm glad I found this website. Thanks for your kind thoughts.

Oldbeauty

oldbeauty

Sara Zipora said:

Pain etc... Sports med
So sorry to hear. I have had two recurrences since Dx and surgery July 2010. Most recently IMRT radiation 28 times. Now almost three months post radiation and having PET Tuesday. Had two rounds of chemo, carbo tax, then carbo doxil for six months then Meggace for seven months, in retrospect all the while second tumor was growing, after I felt constipation and had PTSD, post traumatic stress disorder reactions, as constipation was only symptom before initial dx Stage IX grade 3. After second tumor surgery They gave me Gemzar which my 'compromised' white and red blood cells couldn't take, then I had the radiation.
I truly feel that the surgeries kept the cancer at bay and the chemo only wrecked my bone marrow. But then I'm not an onco.
Now I'm very anxiously awaiting PET results as two weeks agos CT showed a possibly lung 'spot'. Organs ok up to now.

My question to you is do you think I should have an MRI too to look for other stuff, do have sciatc nerve pain bu, my Dx, but i have been flying a bunch, Hong Kong on the way to Australia, LA! nY and now back home in Israel.

Keep fighting and thanks for your very informative post.

Sara

Hi Sara. I don't know what
Hi Sara. I don't know what to say about imaging to look for "other stuff." It sounds like you have been having lots of scans. Actually, I don't think MRI is standard for looking for cancer (except for breast cancer diagnostics, I think). I just got lucky that in looking for reason for pain the doc agreed with me to expand the imaged field enough that the tumor was captured. Previously, I'd had MRIs of my lumbar spine and I have no evident disease in my pelvis. Good luck to you. I'm interested to hear you've been travelling a lot. I've been somewhat afraid to travel. I live in Australia and have been thinking about a visit to family and friends in US, but I was reluctant to travel away from my health insurance. How do you handle the possibility of needing medical care while you are away from Israel?

Best wishes to you.

Oldbeauty

Susanna23

snowbird_11 said:

You asked about difference
You asked about difference in type of cancer relative to recurrences - the main issue can be the expected nature of the metastasized tumors and the types of treatments they may better respond to. Unfortunately, any grade of cancer can metastasize, it's just that higher grade cells may replicate faster causing tumors to grow faster and therefore become evident sooner. As well, different types can vary in the nature of the spread of disease with UPSC following ovarian or fallopian tube cancer patterns.

It may well be that some cancerous cells had already made there way to distant locales but were not detectable back at time of original diagnosis and remained somewhat indolent. Did you have any biopsies done to confirm this was indeed your endometrial cancer recurring? With the hormone sensitivity of your cancer you may be able to get some control without having to resort to the rigors of chemotherapy. My gyn-onc is very much in the 'less is more' mindset when it comes to chemo with hopes of saving the thrashing of bone marrow for as long as possible.

Sending positive thoughts for success with your progesterone therapy.
Annie

MMMT and recurrence
Hello everyone
Since MMMMT (uterine carcinosarcoma) is mentioned I'll just share my experience. I was diagnosed as Grade 3 in October 2010 after ultrasound and biopsy. I had TAH/BSO and lymph node dissection in Novemeber 2010 and the pathology after that showed it was stage Ia but also carcinosarcoma, rather than the more common adenocarcinoma. I was offered six cycles of adjuvant chemotherapy which I accepted and finished April 2011. MMMT is a much more aggressive cancer than adenocarcinoma - if I had had the latter, my surgeon said I would have not needed any further treatment.
Since finishing chemo I have had four check ups and one chest x-ray and all fine. It is more likely to come back to the lungs than the pelvis, according to my oncologist. I did not have radiotherapy - but it is there in reserve if I do have a recurrence to the pelvic area.
I am very happy with the treatment and follow up I have had with the NHS. I am praying I do not have a recurrence - it has been one year now and my surgeon says it is unlikely now that there will be further problems, but who knows?? I have heard that most recurrences occur within TWO years...
Take care
Susan xx

oldbeauty

snowbird_11 said:

You asked about difference
You asked about difference in type of cancer relative to recurrences - the main issue can be the expected nature of the metastasized tumors and the types of treatments they may better respond to. Unfortunately, any grade of cancer can metastasize, it's just that higher grade cells may replicate faster causing tumors to grow faster and therefore become evident sooner. As well, different types can vary in the nature of the spread of disease with UPSC following ovarian or fallopian tube cancer patterns.

It may well be that some cancerous cells had already made there way to distant locales but were not detectable back at time of original diagnosis and remained somewhat indolent. Did you have any biopsies done to confirm this was indeed your endometrial cancer recurring? With the hormone sensitivity of your cancer you may be able to get some control without having to resort to the rigors of chemotherapy. My gyn-onc is very much in the 'less is more' mindset when it comes to chemo with hopes of saving the thrashing of bone marrow for as long as possible.

Sending positive thoughts for success with your progesterone therapy.
Annie

Thank you, Annie
Thanks for the informative post. Yes, they were able to biopsy the 5 cm para-aortic tumor and positively confirm endometrial cancer recurrence. My doc also is of the "wait and see" variety, and he's hoping that I respond to the progesterone. I can't imagine that the lesions in my lungs can be anything but more cancer, that is, that I do have metatastic disease, but he cautions that I should keep positive and wait and see what the hormone therapy tells us. It seems so strange to be incurably ill and feel absolutely fine. I just cannot get over that.

Anyway, for people who read here who are on their initial diagnosis and not a recurrence, all I can stress is to not freak out. I did not handle my initial diagnosis and treatment in a well-thought out way and may be paying the price today. I think it's important to keep in mind that you do have time to consider carefully what you're going to do. In my case, I went in one morning for an outpatient diagnostic procedure and then woke up alone in a hospital room, knowing only that something bad happened. It was the middle of the night and I waited hours for someone to come on rounds to tell me the news. My doc had told my husband it was obvious cancer and since we had not discussed anything beforehand, my terrified husband authorized the hysterectomy. Well, once I got home and started doing research, I realized I should have planned the surgical approach. I should have allowed the original gyn only to do the exploratory and then told him to do no more. Then, I should have found myself the best gyn onc surgeon and had a full consult about type of incision, extent of surgery, appropriate plan for lymph node sampling, etc.

So, those at the beginning of the journey, take it easy and allow yourself time to learn about the possibilities and be educated about your choices and be an active partner in your diagnosis and treatment. Even afterward, since my surgery in 2005, I've allowed myself to be seduced into a false sense of security, I guess. I went to all my follow up checks, and I always felt like whatever gyn onc I was seeing (I moved a lot), none of them seemed too interested in me because I was not an actively ill person. But, everyone said I was "cured." Now, I feel like I should have been insistingall along on screening CTs of the areas most likely to suffer a recurrence, since those organs are well known, apparently (lung, liver, lymph nodes). I'm not blaming anyone for my current situation; I've always known that it takes only one rogue cell to come back and haunt you, but I can't stress enough that people with cancer should never let down their guard and not let fear or complacency overrule their brains.

Enough of this, though. Thanks to all who responded. I will continue to do my research, so I can be informed about the chemo drugs somewhat in the event that is the recommendation I get later this year.

Oldbeauty

oldbeauty

Susanna23 said:

MMMT and recurrence
Hello everyone
Since MMMMT (uterine carcinosarcoma) is mentioned I'll just share my experience. I was diagnosed as Grade 3 in October 2010 after ultrasound and biopsy. I had TAH/BSO and lymph node dissection in Novemeber 2010 and the pathology after that showed it was stage Ia but also carcinosarcoma, rather than the more common adenocarcinoma. I was offered six cycles of adjuvant chemotherapy which I accepted and finished April 2011. MMMT is a much more aggressive cancer than adenocarcinoma - if I had had the latter, my surgeon said I would have not needed any further treatment.
Since finishing chemo I have had four check ups and one chest x-ray and all fine. It is more likely to come back to the lungs than the pelvis, according to my oncologist. I did not have radiotherapy - but it is there in reserve if I do have a recurrence to the pelvic area.
I am very happy with the treatment and follow up I have had with the NHS. I am praying I do not have a recurrence - it has been one year now and my surgeon says it is unlikely now that there will be further problems, but who knows?? I have heard that most recurrences occur within TWO years...
Take care
Susan xx

Susanna
Thank you for your reply and your information. I wish you well. Push your doctor to be pro-active in early detection of any recurrence. If you are reading this board almost two years after treatment, I think you've got a good resource for keeping up to date about your disease and what to look out for.

Best wishes.

Oldbeauty

Sara Zipora

oldbeauty said:

Hi Sara. I don't know what
Hi Sara. I don't know what to say about imaging to look for "other stuff." It sounds like you have been having lots of scans. Actually, I don't think MRI is standard for looking for cancer (except for breast cancer diagnostics, I think). I just got lucky that in looking for reason for pain the doc agreed with me to expand the imaged field enough that the tumor was captured. Previously, I'd had MRIs of my lumbar spine and I have no evident disease in my pelvis. Good luck to you. I'm interested to hear you've been travelling a lot. I've been somewhat afraid to travel. I live in Australia and have been thinking about a visit to family and friends in US, but I was reluctant to travel away from my health insurance. How do you handle the possibility of needing medical care while you are away from Israel?

Best wishes to you.

Oldbeauty

In response to insureane worries and traveling,
I prayed a lot that I shouldn't get sick!
Also both my Israeli and US insurance never said I couldn't travel. Only thing I couldn't get was Travelers Insurance at $5.00 a day used to be a bargain and easier ti file.
Trip to Oz via Hong Kong was great!
Sara

HellieC

oldbeauty said:

Thank you, Annie
Thanks for the informative post. Yes, they were able to biopsy the 5 cm para-aortic tumor and positively confirm endometrial cancer recurrence. My doc also is of the "wait and see" variety, and he's hoping that I respond to the progesterone. I can't imagine that the lesions in my lungs can be anything but more cancer, that is, that I do have metatastic disease, but he cautions that I should keep positive and wait and see what the hormone therapy tells us. It seems so strange to be incurably ill and feel absolutely fine. I just cannot get over that.

Anyway, for people who read here who are on their initial diagnosis and not a recurrence, all I can stress is to not freak out. I did not handle my initial diagnosis and treatment in a well-thought out way and may be paying the price today. I think it's important to keep in mind that you do have time to consider carefully what you're going to do. In my case, I went in one morning for an outpatient diagnostic procedure and then woke up alone in a hospital room, knowing only that something bad happened. It was the middle of the night and I waited hours for someone to come on rounds to tell me the news. My doc had told my husband it was obvious cancer and since we had not discussed anything beforehand, my terrified husband authorized the hysterectomy. Well, once I got home and started doing research, I realized I should have planned the surgical approach. I should have allowed the original gyn only to do the exploratory and then told him to do no more. Then, I should have found myself the best gyn onc surgeon and had a full consult about type of incision, extent of surgery, appropriate plan for lymph node sampling, etc.

So, those at the beginning of the journey, take it easy and allow yourself time to learn about the possibilities and be educated about your choices and be an active partner in your diagnosis and treatment. Even afterward, since my surgery in 2005, I've allowed myself to be seduced into a false sense of security, I guess. I went to all my follow up checks, and I always felt like whatever gyn onc I was seeing (I moved a lot), none of them seemed too interested in me because I was not an actively ill person. But, everyone said I was "cured." Now, I feel like I should have been insistingall along on screening CTs of the areas most likely to suffer a recurrence, since those organs are well known, apparently (lung, liver, lymph nodes). I'm not blaming anyone for my current situation; I've always known that it takes only one rogue cell to come back and haunt you, but I can't stress enough that people with cancer should never let down their guard and not let fear or complacency overrule their brains.

Enough of this, though. Thanks to all who responded. I will continue to do my research, so I can be informed about the chemo drugs somewhat in the event that is the recommendation I get later this year.

Oldbeauty

I was "cured" too - now facing possible 3rd recurrence!
When I had my hysterectomy in 2001, for suspected cancer, no cancer was found - only atypical hyperplasia. I was told to go and enjoy my life - I was cured! For 7 years that was the case, until a "recurrence" of adenocarcinoma was discovered in the central pelvis. It was an isolated nodule, so I had a full course of external pelvic radiotherapy. We were cautiously optimistic that I would be cured again (about 50% of pelvic recurrences can be cured this way) - but 2.5 years later it recurred, again in the pelvis. I had major pelvic debulking surgery followed by chemo (6 cycles of carboplatin and taxol) and was Ok for 18 months. Now I am in the middle of scans, diagnostics etc., as my latest MRI has found a new nodule - again in the pelvis. I am waiting for a PET/CT scan to see if it lights up. I may be facing more surgery, or chemo or hormone therapy - we will decide once we know what this beastie is and where it is lurking!
I guess that what I am trying to say is that cancer is unpredictable. Adenocarcinoma is supposed to be less aggressive than UPSC or MMMT and the chances of it recurring when caught early are minimal. But here I am - just call me unlucky! I have nothing but praise for my medical team and the treatments I have received. Hormone therapy is still in my armoury, as my tumour has tested ER and PR positive. My oncologist reckons she has a number of ladies who have kept their cancer in check for many years with this treatment. I am still hoping for a "cure" at this stage, as my recurrences have all been local to the pelvis and operable - I am hoping that this latest problem is also localised. But I agree - it does seem bizarre that we have such serious health problems yet feel so well!
With kindest wishes
Helen