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Unusual Case - Third Opinion?

Kaleena's picture
Kaleena
Posts: 1226
Joined: Nov 2009

Hi All:

New to this site. Many brave and wonderful people here. It is nice to finally have someone who can relate and where you don't feel so isolated.

Here's my story: Hope someone can help. (By the way I am 49 years old now and I have a wonderful husband and three sons)

2004 - pain - colonoscopy (clear) vaginal sonogram (good)
laparoscopy showed severe endometriosis.

Need a total hysterectomy however they wanted to put me on Lupron to reduce
the endometrosis to help with surgery.

September 2005 - total hysterectomy. Everything good. Doc goes on vacation.
Go for followup and was told that they found edometrial cancer in the uterus and
left ovary. Initially said Grade 2, Stage II

October 2005 - staging surgery - node and washings all clear!
However, as a preventative measure decided to go with the chemo. Also my CA125 have always been in the normal range.

Developed infection at incision site (3 inch/3 inch deep open wound)

Nov 2005 - port surgery
Nov. 2005 - chemo - severe allergic reaction to taxol. So given Gemzar and carboplatin for six months.

Aug 2006 - three HDR bracyes No pelvic rads due to tremendous scarring. Risk of rads outweighed benefit.

since then follow up CT Scan's yearly, Radiologist Oncologist. No meds. Everything
looks good. until July 2007. Old doc retired in early 2006. No one ever takes out port.

New doc sees July CT scan. Now wants biopsy, PET Scan, chemo (taxol), surgery, chemo. I do not like how I was treated by this new doctor.

Anyway take PET Scan - it is clear. So I go for second opinion with another doctor. Looking through my charts it appears it changed from G2 Stage II to G2 Stage IIIa. could have been a typo somewhere since one of my scans said I was 80 years old!

New doctor said still should have biopsy since I am having some pain. Mainly due to scarring. October 1 - biopsy positive for endometrial cancer (which they were surprised)

Sent for PET scan in October 2009 - clear Also, the tumor has DECREASED IN SIZE (without treatment) from July 2009. It is now under 3 cm Then I was sent for MRI - clear. MRI suggested getting another PET scan?????

QUESTION: what kind of treatment. I think the radiation would cause more problems. Is there a radiation that can pinpoint the exact spot? This tumor is below the vaginal cuff and is sitting on the rectum so that is why surgery is out of the question now.

Also, has anyone ever gone to the Cancer Treatment Centers of America? Or do you know of another place I can go for an opinion. Oh I am soooo confused.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Proton beams can target in on a cancer even if you had radiation. I do not know where you live but a radiation oncologist should be able to point you to a proton beam therapy team.

I have heard Cancer Centers of America don't have the best reputation. My two oncologists don't feel they follow the most researched studies in giving treatment. Whether that is true or not I don't know. My breast oncologist (who cured that) called it a Charleton Group.

Perhaps someone else has some more information. Don't give up hope. The proton beams are working well.

Diane

Kaleena's picture
Kaleena
Posts: 1226
Joined: Nov 2009

Thanks Diane!

I have a scheduled appointment with another gyne/onc and my radiologist/oncologist tomorrow (Friday). I am from Pennsylvania and we live outside of Pittsburgh. I want to thank you for all of your input. I didn't know about the proton beam and will certainly ask if they don't bring it up tomorrow.

Also, from another thread thanks for the information. I was able to find a link regarding tumor shrinkage that can occur even without treatment.

With regard to the Cancer Center, I only was thinking about getting another opinion from a different group that wasn't all related. Since I don't know of ANYONE who has gone there, I wasn't getting a "warm and fuzzy" feeling.

Hopefully, I will be satisfied with my appointment tomorrow. I really like my radiologist/oncologist. My gyne/onc retired last year. Since then, I have been in limbo regarding a gyne/oncologist.

Thanks again for all your hope and wishes.

Kathleen

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