Mucinous Endocervical Adenocarcinoma misdiagnosed as UPSC

FightingSpirit

Hello ladies,

After surgery, path report from Mayo indicates that my cancer is actually cervical in origin and not the dreaded UPSC.  The official diagnosis is 1B1 Mucinous Adenocarcinoma of the cervix with lymph node involvement.  The tumor was considered endocervical because of the location (top of cervix, bottom of uterus) and something technical in the path report.  

 

Has this type of misdiagnosis happened to anyone else?  I now have to start over with researching my disease....grrr!!!  At the same time, the doctors are asking what I want to do about chemo/radiation.  I'm not familiar with the options available for this type of cancer and am feeling pressured and ill-informed.

 

Is anyone familiar with this type of cancer?  I haven't been able to find much information on this subtype.  I will also check the cervical cancer board, but wanted to check with you ladies as well.

 

In a nutshell, I'm happy that I do not have UPSC and that the doctors don't expect to see recurrence for 2-3 years, so I have time.  As a result, I am leaning towards an alternative method for the next 9 months and then re-evaluate my options.

 

Good luck and God bless!!!

NorahS

My comments follow...

With the limited information that you have provided, the following are my comments and my opinion.

You Said: "The official diagnosis is 1B1 Mucinous Adenocarcinoma of the cervix with lymph node involvement."  AND "At the same time, the doctors are asking what I want to do about chemo/radiation."  AND  "I do not have UPSC and that the doctors don't expect to see recurrence for 2-3 years"

My concern is the lymph node involvement. Regardless of the tumor type - the cancer was found in your lymph nodes. So it could have spread anywhere in your body's extensive lymphatic system. (This is why they treat lymphoma with mainly chemo (and sometimes radiation) first - you simply cannot excise, by surgery, every lymph node in your body). 

Why are the doctors asking (pressuring?) you about chemo/radiation and why do they not "expect" to see recurrence for 2-3 years?. Could it be that they recommend chemo/radiation and without it you are at risk for recurrence within 2-3 years?  I find this part of your post really quite fuzzy and would want it clarified before proceeding. A good way to frame this question to an oncologist would be: "If I were your (wife, daughter, sister) what would you advise me to do?"

I would check that I had not misheard this part of your doctor/patient conversation - that the recommendation was that without followup chemo - you are at risk for recurrence within 2 to 3 years.

With my limited knowledge of cancer, I do believe that once cancer is in your lymphatic system, chemo (which is systemic) is usually the best option, along with concurrent and followup lifestyle changes to support and rebuild the immune system. However, this is my personal belief and the path that I have chosen and I do recognize that not everyone shares my beliefs.   

In any event, if you get clarification from your allopathic (current, mainstream) physician(s) on their recommendations and you do decide to proceed down the path of alternative medicine first, I hope you decide to consult a professional in alternative medicine (ie: naturopathic or osteopathic physician) to put together a comprehensive treatment plan and guide you over the next months. 

Whatever your final choice, I wish you well in the future. 

FightingSpirit

NorahS said:

My comments follow...

With the limited information that you have provided, the following are my comments and my opinion.

You Said: "The official diagnosis is 1B1 Mucinous Adenocarcinoma of the cervix with lymph node involvement."  AND "At the same time, the doctors are asking what I want to do about chemo/radiation."  AND  "I do not have UPSC and that the doctors don't expect to see recurrence for 2-3 years"

My concern is the lymph node involvement. Regardless of the tumor type - the cancer was found in your lymph nodes. So it could have spread anywhere in your body's extensive lymphatic system. (This is why they treat lymphoma with mainly chemo (and sometimes radiation) first - you simply cannot excise, by surgery, every lymph node in your body). 

Why are the doctors asking (pressuring?) you about chemo/radiation and why do they not "expect" to see recurrence for 2-3 years?. Could it be that they recommend chemo/radiation and without it you are at risk for recurrence within 2-3 years?  I find this part of your post really quite fuzzy and would want it clarified before proceeding. A good way to frame this question to an oncologist would be: "If I were your (wife, daughter, sister) what would you advise me to do?"

I would check that I had not misheard this part of your doctor/patient conversation - that the recommendation was that without followup chemo - you are at risk for recurrence within 2 to 3 years.

With my limited knowledge of cancer, I do believe that once cancer is in your lymphatic system, chemo (which is systemic) is usually the best option, along with concurrent and followup lifestyle changes to support and rebuild the immune system. However, this is my personal belief and the path that I have chosen and I do recognize that not everyone shares my beliefs.   

In any event, if you get clarification from your allopathic (current, mainstream) physician(s) on their recommendations and you do decide to proceed down the path of alternative medicine first, I hope you decide to consult a professional in alternative medicine (ie: naturopathic or osteopathic physician) to put together a comprehensive treatment plan and guide you over the next months. 

Whatever your final choice, I wish you well in the future. 

Thanks for your response.  To

Thanks for your response.  To clarify...

Prior to surgery, the CT scan was completely clear.  After surgery, the path report indicated lymph node involvement.  The doctor says she got all of the visible cancer and removed the inflamed lymph nodes, but wants to do 13 weeks chemo and 5 weeks pelvic/brachy radiation as a preventative measure.  If no treatment is done, there is a possibility of metastatic recurrence in 2-3 years. This is confusing for the following reasons:

1.  Why did the CT not show lymph node involvement?

2.  Why such aggressive treatment if the scan is clear and all visible cancer has been removed?

3.  How can we know if the treatment was effective if the pre-surgery scan was clear AND if the post treatment scan is clear when early reoccurence is not expected?  (I asked this question and got an answer about the post treatment CT only being used to ensure no post-op complications with lymph nodes.  In other words, not an answer to my question)

This is why I am considering an alternative path at this time, with testing in 9 months.  This seems like the ideal time to build up my immune system instead of tearing it down with treatments whose effectiveness cannot be measured.  Perhaps I am misunderstanding the ability of CT scans to pick up lymph node involvement.  I will ask for clarification on that point.

Believe me, I am not in denial or engaging in magical thinking.  I am just trying to do what makes sense for me instead of blindly accepting treatment without understanding why it is necessary at this time. My doctor seems to have a very "by the book" assembly line approach to treatment which makes me uncomfortable. She was unable to offer any statistics supporting this approach vs doing nothing.  Perhaps I should do as you suggest and seek opinions from other doctors, both allopathic and holistic.

TAyers

FightingSpirit said:

Thanks for your response.  To

Thanks for your response.  To clarify...

Prior to surgery, the CT scan was completely clear.  After surgery, the path report indicated lymph node involvement.  The doctor says she got all of the visible cancer and removed the inflamed lymph nodes, but wants to do 13 weeks chemo and 5 weeks pelvic/brachy radiation as a preventative measure.  If no treatment is done, there is a possibility of metastatic recurrence in 2-3 years. This is confusing for the following reasons:

1.  Why did the CT not show lymph node involvement?

2.  Why such aggressive treatment if the scan is clear and all visible cancer has been removed?

3.  How can we know if the treatment was effective if the pre-surgery scan was clear AND if the post treatment scan is clear when early reoccurence is not expected?  (I asked this question and got an answer about the post treatment CT only being used to ensure no post-op complications with lymph nodes.  In other words, not an answer to my question)

This is why I am considering an alternative path at this time, with testing in 9 months.  This seems like the ideal time to build up my immune system instead of tearing it down with treatments whose effectiveness cannot be measured.  Perhaps I am misunderstanding the ability of CT scans to pick up lymph node involvement.  I will ask for clarification on that point.

Believe me, I am not in denial or engaging in magical thinking.  I am just trying to do what makes sense for me instead of blindly accepting treatment without understanding why it is necessary at this time. My doctor seems to have a very "by the book" assembly line approach to treatment which makes me uncomfortable. She was unable to offer any statistics supporting this approach vs doing nothing.  Perhaps I should do as you suggest and seek opinions from other doctors, both allopathic and holistic.

Why CT did not show lymph node involvement?

Hello, I had UPSC grade 3 stage 3c. I had a catscan prior to surgery and it did not show lymph involvement, but during surgery the biopsies 21 of them and 4 had cancer. So nodes dont always show up on scans unless they are swollen enough to show up. Microscopic cells can be lingering after surgery, they can't visibly see during surgery so that's why they offer chemo and radiation. I did both, I had 6 sessions of chemo each 3 weeks apart and 25 sessions of pelvic radiation and 2 internal brachytherapies. I am not saying alternative therapy isn't the way to go. just letting you know the reason behind their advice.  Tami

NorahS

FightingSpirit said:

Thanks for your response.  To

Thanks for your response.  To clarify...

Prior to surgery, the CT scan was completely clear.  After surgery, the path report indicated lymph node involvement.  The doctor says she got all of the visible cancer and removed the inflamed lymph nodes, but wants to do 13 weeks chemo and 5 weeks pelvic/brachy radiation as a preventative measure.  If no treatment is done, there is a possibility of metastatic recurrence in 2-3 years. This is confusing for the following reasons:

1.  Why did the CT not show lymph node involvement?

2.  Why such aggressive treatment if the scan is clear and all visible cancer has been removed?

3.  How can we know if the treatment was effective if the pre-surgery scan was clear AND if the post treatment scan is clear when early reoccurence is not expected?  (I asked this question and got an answer about the post treatment CT only being used to ensure no post-op complications with lymph nodes.  In other words, not an answer to my question)

This is why I am considering an alternative path at this time, with testing in 9 months.  This seems like the ideal time to build up my immune system instead of tearing it down with treatments whose effectiveness cannot be measured.  Perhaps I am misunderstanding the ability of CT scans to pick up lymph node involvement.  I will ask for clarification on that point.

Believe me, I am not in denial or engaging in magical thinking.  I am just trying to do what makes sense for me instead of blindly accepting treatment without understanding why it is necessary at this time. My doctor seems to have a very "by the book" assembly line approach to treatment which makes me uncomfortable. She was unable to offer any statistics supporting this approach vs doing nothing.  Perhaps I should do as you suggest and seek opinions from other doctors, both allopathic and holistic.

Thanks for your response...

...your clarifications help to make a little more sense of your situation now.  Here is an oft quote link to an well-written article at MD Anderson:

http://www2.mdanderson.org/depts/oncolog/articles/10/4-5-aprmay/4-5-10-compass.html

It is important to pay particular attention to 2 paragraphs under the heading "Understanding UPSC":

• the 5th paragraph notes that many endometrial tumors have a mixed histology. Although it was previously thought that at least 10% papillary serous histology should be present, studies have shown that the tendency to recur and survival are related not to the percentage of tumor that has papillary serous histology but rather to the presence of ANY papillary serous component.

• the 3rd paragraph notes that unlike other tumors, UPSC spreads to peritoneal surfaces, much like ovarian cancer, and thus the depth of tumor invasion is not a reliable indicator of whether UPSC has metastasized. The danger of UPSC is that recurrence rate for stage 1 UPSC is much higher than that for endometrioid tumors, and if it does recur it's also more likely to be distant than local.

So my concern is that you had a tumor of mixed histology and that the above article (and other medical publications that I have seen - I'll try to find another one that I'm thinking of) recommends the followup that your doctors recommend. UPSC is highly aggressive and I have seen posts from women on this board who were early stage UPSC - had surgery only - and then within a few years were back on this board as Stage 3 or 4.

Please understand that I don't disagree with your treatment plan - there are so many decisions to be made about care, but the bottom line is only the person with the cancer can ultimately decide which are the best decisions for them. However, I do urge you to have the guidance and support for your treatment plan from whatever type of doctor you feel comfortable with for the next year.