Type 1 AND Type 2

Pat52

Hi.  I had a D&C in Dec 2013 because of heavy bleeding and pain and the pathology report showed both Type 1 and Type 2 (UPSC) uterine cancer.  I had a radical hysterectomy in January which staged my cancer as Stage 1B.  The tumor was grade 1 endemetroid (sp?) embedded deep into the uterine wall but the hysterectomy also showed about 10% USPC cancer cells.  My oncologist recommended chemo & radiation but has sent my report to Hopkinsfor a 2nd opinion.  A few people told me they think the treatment seems overly-aggressive.  I'm 52 years old with a 14 & 12 year old so am ok with taking the "better safe than sorry" approach.

Has anyone else had a similar diagnosis?  If so, what treatments & outcomes have you experienced?

 

Pat

 

 

 

Kaleena

Pat

Dear Pat:

When I was diagnosed with Endometrial Adenocarcinoma Grade 2, Stage 3, after a routine hysterectomy, I then had to go for staging surgery and they found nothing else.  My oncologist said I could do nothing or I could do a preventative treatment.   He told me that there was no cure but what I had was treatable.  I decided to do the chemo treatment (Carbo & Taxol).    I was 45 at the time and my sons were 10, 12 and 14.    (Back in 2005)   I then had 3 brachytherapies.  Due to my significant scarring, they advised against doing pelvic radiation on me.   I have done well with that ever since.

This is a decision you must make.   given that you have two types, you may want to consider the treatment.    Endometrial is different than UPSC and because of these two different types, you may also want to consider treatment.  I believe UPSC may be a bit more aggressive than endometrial, but like anything, it reacts differently for everyone.

If you are really comfortable with your onc you may just want to go ahead.  Or ask him additional questions until you understand fully.  Also, you may wish to seek a second opinion which it appears that your onc has already is doing.   I have known Stage 1 people without treatment to recur within six months and then again others who are staged higher and not recur.    

As much as I didn't want to do the treatment, I decided on doing the treatment because I know that I would personally worry about every ache and pain and the thought of this would probably drive me crazy with worry that I was recurring so I had the treatment done.   I still get aches and pains though I don't worry as much as I would have not getting the treatment.

I hope I didn't confuse you more.  My best to you on your decision.  It also sounds like they got to it early which is good too.

Kathy

 

Pat52

Kaleena said:

Pat

Dear Pat:

When I was diagnosed with Endometrial Adenocarcinoma Grade 2, Stage 3, after a routine hysterectomy, I then had to go for staging surgery and they found nothing else.  My oncologist said I could do nothing or I could do a preventative treatment.   He told me that there was no cure but what I had was treatable.  I decided to do the chemo treatment (Carbo & Taxol).    I was 45 at the time and my sons were 10, 12 and 14.    (Back in 2005)   I then had 3 brachytherapies.  Due to my significant scarring, they advised against doing pelvic radiation on me.   I have done well with that ever since.

This is a decision you must make.   given that you have two types, you may want to consider the treatment.    Endometrial is different than UPSC and because of these two different types, you may also want to consider treatment.  I believe UPSC may be a bit more aggressive than endometrial, but like anything, it reacts differently for everyone.

If you are really comfortable with your onc you may just want to go ahead.  Or ask him additional questions until you understand fully.  Also, you may wish to seek a second opinion which it appears that your onc has already is doing.   I have known Stage 1 people without treatment to recur within six months and then again others who are staged higher and not recur.    

As much as I didn't want to do the treatment, I decided on doing the treatment because I know that I would personally worry about every ache and pain and the thought of this would probably drive me crazy with worry that I was recurring so I had the treatment done.   I still get aches and pains though I don't worry as much as I would have not getting the treatment.

I hope I didn't confuse you more.  My best to you on your decision.  It also sounds like they got to it early which is good too.

Kathy

 

Thanks so much, Kathy.  I

Thanks so much, Kathy.  I know what you mean about worrying about aches & pains.  I'm doing that now while in the decision process. 

I'm leaning toward doing the treatment because of how aggressive UPSC is; it behaves much like ovarian cancer. 

Thanks, Again.

 

Pat

Hybridspirits

treatment

I was diagnosed in 12/2012 and asked for a second opinion.  My oncologist sent slides off to Dana Farber who did a complete second opinion on the diagnosis and then i went for a consult on treatment.  So I would be curious what the second opinon is?  just treatment on the diagnosis found?

The second opinion at Dana Farber diagreed with original diagnosis and we were advised for a third. After all that we had consults on chemo and radiation.

 

the final diagnosis after three reviews was non MMT/USPC stage 1A grade 3. With that they agreed on chemo and internal radiation, no external radiation given that I had 72 lymph nodes sampled all okay

 

have  you seen  your full pathology reoprt?  that would be helpful to read and understand for the discussion on treatment. It is my undrestanding that for a stage 1A and yours 1B the chemo is for microscopic cells that might be lingering in your body, so more Adjunct thereapy and internal radiation will be to prevent vaginal recurrence.  The external radiation is focused on the lymph nodes

get and keep all lab reports, cat scans, pathology, read through and ask questions. 

all in all I am glad I had the chemo/internal readiation.  I am 55 years old, and 54 at time of treatment.  it was very doable and behind me now

let me know if I can help anymore

Sharon

Pat52

Hybridspirits said:

treatment

I was diagnosed in 12/2012 and asked for a second opinion.  My oncologist sent slides off to Dana Farber who did a complete second opinion on the diagnosis and then i went for a consult on treatment.  So I would be curious what the second opinon is?  just treatment on the diagnosis found?

The second opinion at Dana Farber diagreed with original diagnosis and we were advised for a third. After all that we had consults on chemo and radiation.

 

the final diagnosis after three reviews was non MMT/USPC stage 1A grade 3. With that they agreed on chemo and internal radiation, no external radiation given that I had 72 lymph nodes sampled all okay

 

have  you seen  your full pathology reoprt?  that would be helpful to read and understand for the discussion on treatment. It is my undrestanding that for a stage 1A and yours 1B the chemo is for microscopic cells that might be lingering in your body, so more Adjunct thereapy and internal radiation will be to prevent vaginal recurrence.  The external radiation is focused on the lymph nodes

get and keep all lab reports, cat scans, pathology, read through and ask questions. 

all in all I am glad I had the chemo/internal readiation.  I am 55 years old, and 54 at time of treatment.  it was very doable and behind me now

let me know if I can help anymore

Sharon

Treatment

Sharon - Thanks for your help.  I've asked for a copy of the full pathology report today and will followup on getting the ct scans and other reports too.  I only had 18 lymph nodes removed but all were clear.  A little worried about that number because I've seen on here that many women had 30+ tested. 

Your treatment sounds like what is recommended for me and glad to hear that it was doable.  How long did the entire treatment take?  Looking forward to it being behind me too.

 

Pat

Hybridspirits

Pat52 said:

Treatment

Sharon - Thanks for your help.  I've asked for a copy of the full pathology report today and will followup on getting the ct scans and other reports too.  I only had 18 lymph nodes removed but all were clear.  A little worried about that number because I've seen on here that many women had 30+ tested. 

Your treatment sounds like what is recommended for me and glad to hear that it was doable.  How long did the entire treatment take?  Looking forward to it being behind me too.

 

Pat

treatment

started Chemo early Jan 2013, finished 4/18 and did interanal radiation every three weeks ending 5/31. 

look at your pathology report and see what it says for lymphatic invasion.  That is what I believe as if positive on way to the lymph nodes but didn't make it.  It is a piece of the puzzle in determining treatment.  I don't believe it is currently a factor in any staging

Dee5678

Hybridspirits said:

treatment

started Chemo early Jan 2013, finished 4/18 and did interanal radiation every three weeks ending 5/31. 

look at your pathology report and see what it says for lymphatic invasion.  That is what I believe as if positive on way to the lymph nodes but didn't make it.  It is a piece of the puzzle in determining treatment.  I don't believe it is currently a factor in any staging

Hi, I am sorry to hear about

Hi, I am sorry to hear about your diagnosis. I am too newly diagnosed myself to help you, though I may have a mix of the two as well. Will have to wait for surgical pathology to know for sure. 

 

Your pathology report will likely be enlightening. It will tell you more than just the stage.  It may also have information on various biomarkers that may also influence treatment. 

 

All the best to you. 

NoTimeForCancer

VERY similar to yours Pat

I had Type 1 and Type 2.  UPSC Stage 1A with nothing in the lymph nodes at age 49.  Because it was the agressive type it was recommended the Full Monty, chemo/radiation/chemo.  Was the treatment too agressive?  I decided I did not want to take chances of this coming back.  I truly believe I can be cured of this disease and did the whole thing. 

I am coming up on 1 1/2 years NED.  I plan on being around a long time and continue to put money in my IRA.  You have to do what you believe is best for you but if you have doubt seek out a second opinion. 

Please let us know what you do and come back to ask any questions.

Jane

Kaleena said:

Pat

Dear Pat:

When I was diagnosed with Endometrial Adenocarcinoma Grade 2, Stage 3, after a routine hysterectomy, I then had to go for staging surgery and they found nothing else.  My oncologist said I could do nothing or I could do a preventative treatment.   He told me that there was no cure but what I had was treatable.  I decided to do the chemo treatment (Carbo & Taxol).    I was 45 at the time and my sons were 10, 12 and 14.    (Back in 2005)   I then had 3 brachytherapies.  Due to my significant scarring, they advised against doing pelvic radiation on me.   I have done well with that ever since.

This is a decision you must make.   given that you have two types, you may want to consider the treatment.    Endometrial is different than UPSC and because of these two different types, you may also want to consider treatment.  I believe UPSC may be a bit more aggressive than endometrial, but like anything, it reacts differently for everyone.

If you are really comfortable with your onc you may just want to go ahead.  Or ask him additional questions until you understand fully.  Also, you may wish to seek a second opinion which it appears that your onc has already is doing.   I have known Stage 1 people without treatment to recur within six months and then again others who are staged higher and not recur.    

As much as I didn't want to do the treatment, I decided on doing the treatment because I know that I would personally worry about every ache and pain and the thought of this would probably drive me crazy with worry that I was recurring so I had the treatment done.   I still get aches and pains though I don't worry as much as I would have not getting the treatment.

I hope I didn't confuse you more.  My best to you on your decision.  It also sounds like they got to it early which is good too.

Kathy

 

newly diagnosed

Hi there.  I have been newly diagnosed with Endometrial Adenocarcinoma also.  Not sure of the stage, either one or 2. One doctor says 1 and another is leaning more towards 2. Also discovered during hysterectomy.  I was told two days ago that I needed 18 weeks of chemo, and because of my age, just turned 46, and the lower stage, it is very treatable, despite the rarity of it.  They do not want me to have staging/completion surgery until I am 3 cycles into chemo, which is what is confusing me.  As of right now, it seems like everything is being based on assumptions, due to the aggressive nature of clear cell cancers. Surgeon said they got everything out that they saw, and the urologist that was involved also poked around and didn't see anything suspicious.  I have not been scheduled for any additional tests or scans, just an appointment tomorrow to have the port implanted.  I am really confused by the whole thing.  I have a list of questions for the doctor but I don't have that appointment until next Friday.

So much to take in while sitting in a conference room with a doctor.  I appreciate any additional insight you can provide, from your own expreience.

Thank you and best wishes,

Jane

NoTimeForCancer

Jane said:

newly diagnosed

Hi there.  I have been newly diagnosed with Endometrial Adenocarcinoma also.  Not sure of the stage, either one or 2. One doctor says 1 and another is leaning more towards 2. Also discovered during hysterectomy.  I was told two days ago that I needed 18 weeks of chemo, and because of my age, just turned 46, and the lower stage, it is very treatable, despite the rarity of it.  They do not want me to have staging/completion surgery until I am 3 cycles into chemo, which is what is confusing me.  As of right now, it seems like everything is being based on assumptions, due to the aggressive nature of clear cell cancers. Surgeon said they got everything out that they saw, and the urologist that was involved also poked around and didn't see anything suspicious.  I have not been scheduled for any additional tests or scans, just an appointment tomorrow to have the port implanted.  I am really confused by the whole thing.  I have a list of questions for the doctor but I don't have that appointment until next Friday.

So much to take in while sitting in a conference room with a doctor.  I appreciate any additional insight you can provide, from your own expreience.

Thank you and best wishes,

Jane

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