Metastatic endometrial cancer spread to my lungs

Mtybergh89

Last October I was diagnosed with endometrial cancer in my lungs. I had a hysterectomy five years ago and had check ups every three and later six months. Everything was great until a persistent cough sent me to my doctor who ordered xrays of my lungs. From there I ended up going to Moffit Cancer Institute to a gynacologica oncologist who imediately put me on a hormone regimen. According to the latest scans there is a slight reduction in tumor size over past three months. He indicates chemo will not work in this case and if the hormones don't help there is nothing I can do, and survival is twelve to fifteen months. There seems to be evidence I am finding that chemotherapy could be helpful. Anyone that has information or success story would be great to hear it.

AWK

So sorry to see this!

So glad you reached out.  You aren't alone.  I have progressive, metatastic UPSC which now includes five tumors including one on my heart inside the pericardial sac.  I am considered chemo resistant and have been treated for the last six months with Avastin which is not a chemotherapy but attacks the blood sources to tumors.  I am now considered stable with no new growth and nominal shrinking of two tumors.  There are other options that are not chemotherapy.  I get treated via infusion every three weeks, treatments last an hour or so and aside from being tired have few sideeffects.  In my case stable is great news, I continue to work full time, ride horses and enjoy life.  Push your doctors to keep looking.  Sending hugs.  Anne

Abbycat2

This is unfortunate news, Mtybergh

I don't know much about treatment once the uterine cancer spreads to the lungs, but I am puzzled as to why chemotherapy would not help you.  Could you share more about your cancer, that is, what stage and grade you had?  The only thing that I can think of that would cause your doctor to say that chemo wouldn't work for you is if you had a grade 1 cancer.  Grade 1 cancers are slow growing and chemo destroys fast growing and fast dividing cells only.

You mentioned that you had surgery and then check ups.  Did you ever have chemo, such as carboplatin and taxol? Some women just had surgery and nothing more.  Others have had chemo, brachytherapy or abdominal radiation.  Did you ever have CA-125 blood tests, and if so, were the results within normal range?

I had a friend with stage 4 lung cancer and she received chemotherapy on and off for 5 years.  Maybe cancer that starts in the lungs is different somehow, but I don't know.  

I wish you the very best, Mtybergh,

Cathy

nempark

So sorry!

I know someone who had breast cancer and it spread to her lungs.  She is now doing chemo and herbal treatments.  I would consult another Doctor.  So sorry you have to go through this.  Please take care of yourself and take one day at a time.  I send you good wishes and hope you can get some help.  Please let us know how you are doing.  I would like some more info.  Did you do chemo?  I am thinking you had endo cancer and had a hyst.  Five years survival is almost cured.  Please lets us know what grade you had and what treatment.  I am a five year survivor of endo and I had chemo. stage 1a grade 3 MMMT.
s

Mtybergh89

Abbycat2 said:

This is unfortunate news, Mtybergh

I don't know much about treatment once the uterine cancer spreads to the lungs, but I am puzzled as to why chemotherapy would not help you.  Could you share more about your cancer, that is, what stage and grade you had?  The only thing that I can think of that would cause your doctor to say that chemo wouldn't work for you is if you had a grade 1 cancer.  Grade 1 cancers are slow growing and chemo destroys fast growing and fast dividing cells only.

You mentioned that you had surgery and then check ups.  Did you ever have chemo, such as carboplatin and taxol? Some women just had surgery and nothing more.  Others have had chemo, brachytherapy or abdominal radiation.  Did you ever have CA-125 blood tests, and if so, were the results within normal range?

I had a friend with stage 4 lung cancer and she received chemotherapy on and off for 5 years.  Maybe cancer that starts in the lungs is different somehow, but I don't know.  

I wish you the very best, Mtybergh,

Cathy

I was told I had stage 1a cancer. But they indicated they were not positive it was stage 1a as the biopsy was not clear. The surgeon who did the hysterectomy indicated it was 1a so they felt the stage would stay the same. I had no follow up after the hysterectomy other than regular internals. I am not sure about the blood tests but I imagine thats been done. I am at a recognized cancer center in Tampa. I am currently trying to get an appointment with my original surgeon. He is considered the "Guru" in these matters. They did say chemo was not an option. Thank you for your thoughts. Maureen

Mtybergh89

nempark said:

So sorry!

I know someone who had breast cancer and it spread to her lungs.  She is now doing chemo and herbal treatments.  I would consult another Doctor.  So sorry you have to go through this.  Please take care of yourself and take one day at a time.  I send you good wishes and hope you can get some help.  Please let us know how you are doing.  I would like some more info.  Did you do chemo?  I am thinking you had endo cancer and had a hyst.  Five years survival is almost cured.  Please lets us know what grade you had and what treatment.  I am a five year survivor of endo and I had chemo. stage 1a grade 3 MMMT.
s

So sorry!

I see you're a five year survivor of endometrial cancer. We both have the same stage, I am not sure of the Grade. Was your cancer in your lungs?

Mtybergh89

Follow up to my case info

My doctor indicated unless I am feeling worse, I do not need to come back for six months for another scan. Keep in mind there was some slight shrinkage of the tumor after three months of hormone treatments. I hate to second guess the Dr. but that doesn't sound right to me. I have called my original surgeon who performed the original hysterectomy, and requested an appointment. I am hopeful he can shed some light on this matter for me as he is well respected in his field.

 

Thanks for all your well wishes and information. I am grateful!

Double Whammy

Mtybergh89 said:

Follow up to my case info

My doctor indicated unless I am feeling worse, I do not need to come back for six months for another scan. Keep in mind there was some slight shrinkage of the tumor after three months of hormone treatments. I hate to second guess the Dr. but that doesn't sound right to me. I have called my original surgeon who performed the original hysterectomy, and requested an appointment. I am hopeful he can shed some light on this matter for me as he is well respected in his field.

 

Thanks for all your well wishes and information. I am grateful!

I had stage 1a, grade 1

endometroid adenocarcinoma.   I have had a similar follow up as you and will reach the 5 year mark in July.  At that point, I'm sure my gynecologic oncologist will kick me to the curb and I'm happy to have that happen.  At my last visit, he said he'd be very surprised if I recurred at this time and I sure don't want to surprise him.  So sorry you surprised your gyn oncologist.  I do think it's a good idea to get another opinion and am happy to hear that you're doing just that.  I'm assuming since you didn't have a recurrence until recently, that your cancer was also a low grade, slow growing type.  It's my understanding (as others have said) that the less aggressive cancers are more responsive to hormone therapy and less responsive to chemo, but we're all so different and there are so many different medical opinions and types of endometrial cancer. 

Good luck.  Please keep us informed what your original surgeon has to say. BTW, do you have copies of your original pathology reports?  It's a really good idea to get that if you don't.

Suzanne

Abbycat2

Double Whammy said:

I had stage 1a, grade 1

endometroid adenocarcinoma.   I have had a similar follow up as you and will reach the 5 year mark in July.  At that point, I'm sure my gynecologic oncologist will kick me to the curb and I'm happy to have that happen.  At my last visit, he said he'd be very surprised if I recurred at this time and I sure don't want to surprise him.  So sorry you surprised your gyn oncologist.  I do think it's a good idea to get another opinion and am happy to hear that you're doing just that.  I'm assuming since you didn't have a recurrence until recently, that your cancer was also a low grade, slow growing type.  It's my understanding (as others have said) that the less aggressive cancers are more responsive to hormone therapy and less responsive to chemo, but we're all so different and there are so many different medical opinions and types of endometrial cancer. 

Good luck.  Please keep us informed what your original surgeon has to say. BTW, do you have copies of your original pathology reports?  It's a really good idea to get that if you don't.

Suzanne

Stage 1a

Maureen, It sounds like you had a biopsy prior to surgery and your surgeon thought you had stage 1a. The stage and grade is determined by what your surgeon sees when he looks inside you and what the pathologist sees when he examines your uterus , Fallopian tubes , ovaries and pelvic wash . I think it is always a good idea to get a copy of your pathology report. It will tell you what you need to know. I went to Moffitt in Tampa and saw Dr. Apte for a second opinion in November, 2013. He spent a lot of time with me but never would say what my prognosis was because , I concluded, only God knows that. I 've read here that some women are treated with hormones with great success depending on the specific type of uterine cancer they have . I was diagnosed with uterine papillary serous carcinoma and this is a grade 3 (aggressive ) cancer. I don 't think it is treated with hormones, but I don't know.

Maureen , let us know how you are doing.

Cathy

AWK

Abbycat2 said:

Stage 1a

Maureen, It sounds like you had a biopsy prior to surgery and your surgeon thought you had stage 1a. The stage and grade is determined by what your surgeon sees when he looks inside you and what the pathologist sees when he examines your uterus , Fallopian tubes , ovaries and pelvic wash . I think it is always a good idea to get a copy of your pathology report. It will tell you what you need to know. I went to Moffitt in Tampa and saw Dr. Apte for a second opinion in November, 2013. He spent a lot of time with me but never would say what my prognosis was because , I concluded, only God knows that. I 've read here that some women are treated with hormones with great success depending on the specific type of uterine cancer they have . I was diagnosed with uterine papillary serous carcinoma and this is a grade 3 (aggressive ) cancer. I don 't think it is treated with hormones, but I don't know.

Maureen , let us know how you are doing.

Cathy

Nope no hormones for the UPSC girls

That is what my team has emphasized.  To the point of having as much of a hormone free diet as possible. I too have never asked about prognosis.  It wouldn't change my outcome nor the way I enjoy my life or how I live it now.  

Hang in there!  From what I understand, there are always options!  Anne

Mtybergh89

Abbycat2 said:

Stage 1a

Maureen, It sounds like you had a biopsy prior to surgery and your surgeon thought you had stage 1a. The stage and grade is determined by what your surgeon sees when he looks inside you and what the pathologist sees when he examines your uterus , Fallopian tubes , ovaries and pelvic wash . I think it is always a good idea to get a copy of your pathology report. It will tell you what you need to know. I went to Moffitt in Tampa and saw Dr. Apte for a second opinion in November, 2013. He spent a lot of time with me but never would say what my prognosis was because , I concluded, only God knows that. I 've read here that some women are treated with hormones with great success depending on the specific type of uterine cancer they have . I was diagnosed with uterine papillary serous carcinoma and this is a grade 3 (aggressive ) cancer. I don 't think it is treated with hormones, but I don't know.

Maureen , let us know how you are doing.

Cathy

Follow up

Thank you for your updates. My path reports are with Moffit. I am trying to get Moffit to send my total report package to Dr. Hoffman at Tampa General. He did the original surgery. Haven't heard back from Moffit if this has been done. I plan to pester them until they do it. My Dr. at Moffit is Dr. Shahzad. Not sure about him. He insists I should be seeing Dr. Hoffman as he did original surgery. 

Best wishes for you in your recovery. Maureen