Study Finds Widespread Flaws in Treatment

Excellent article - thank you!

It makes me even MORE thankful that my gynecologist immediately turned me over to a gynecological oncologist.  I was told my agressive form of uterine cancer acts very much like ovarian cancer so it is very easy to draw some parellels here. 

Thank You, Jan!

Thanks Jan for the article link.

It encourages me to be more aggressive on my own behalf. I don't know about others, but after diagnosis, I was in a hurry to see a surgeon. Though I was very unhappy with my OB/GYN, was thankful for the Gynecological Oncologist she recommended. I had my radical hysterectomy asap, and was diagnosed with Stage3B, Grade 3 uterine carcinosarcoma, with positive washings, and cancer penetration in more than 50 percent of my perimetrium. No visible evidence in lymph nodes.

None of my doctors (surgeon, hematological oncologist giving chemo, and 2 radiological oncologists) have experience with MMMT. And, they're now evenly divided about the issue of pelvic radiation, which I asked about. They seem like good doctors, but are divided. I will have to make a decision about radiation with the week. I want my treatment to be as aggressive as possible, but I am also afraid of the side effects of pelivc radiation. I've been ill and in pain for more than 5 years before getting the diagnosis, and I'm loathe to take on indefinite bowel and bladder problems.

How do you go about finding doctors who have experience with this rare cancer? This is the tough part for me. As soon as I begin to feel better (just had m 6th of 6 carbo/taxol treatments several days ago), I will route around as best I can for more advice and perhaps another doctor to consult with. I live in Berkeley, in the SF Bay Area and am surprized that the university med. ctr. here in SF only sees an average of 2 patients a year with uterine MMMT.

Thanks, though, for your informative and encouraging posts.

-jane

 

DrienneB said:

Thank You, Jan!

Thanks Jan for the article link.

It encourages me to be more aggressive on my own behalf. I don't know about others, but after diagnosis, I was in a hurry to see a surgeon. Though I was very unhappy with my OB/GYN, was thankful for the Gynecological Oncologist she recommended. I had my radical hysterectomy asap, and was diagnosed with Stage3B, Grade 3 uterine carcinosarcoma, with positive washings, and cancer penetration in more than 50 percent of my perimetrium. No visible evidence in lymph nodes.

None of my doctors (surgeon, hematological oncologist giving chemo, and 2 radiological oncologists) have experience with MMMT. And, they're now evenly divided about the issue of pelvic radiation, which I asked about. They seem like good doctors, but are divided. I will have to make a decision about radiation with the week. I want my treatment to be as aggressive as possible, but I am also afraid of the side effects of pelivc radiation. I've been ill and in pain for more than 5 years before getting the diagnosis, and I'm loathe to take on indefinite bowel and bladder problems.

How do you go about finding doctors who have experience with this rare cancer? This is the tough part for me. As soon as I begin to feel better (just had m 6th of 6 carbo/taxol treatments several days ago), I will route around as best I can for more advice and perhaps another doctor to consult with. I live in Berkeley, in the SF Bay Area and am surprized that the university med. ctr. here in SF only sees an average of 2 patients a year with uterine MMMT.

Thanks, though, for your informative and encouraging posts.

-jane

 

second opinion

Have you talked to your gynecological oncologist (my suregeon) ?  When I received my diagnosis in November of last year the first thing I asked was how can I get a second opinion.  The answer I received from my gynecological oncologist was she could arrange it all.  She gave me a list of great places to do a second opinion.  Because she arranged the appt and the sending of the slides I had it within no time.  Now I have to share they said mine was slam dunk MMT 1A.  But if you want to go have a ball. They even said since I picked Dana Farber in Boston a big cancer hospital and research hospital since it is really not necessary have a dinner and enjoy yourself in the city.  So I went,  had a great appt with another oncologist.  She wrote up her recommendation and actually suggested we not decide on radiation until later.  Note I had 65 pelvic lymph nodes removed all neg and 14 aorta lymph nodes removed all negative.  Unfortunatley the slides didn't make it to Dana Farbers pathologist specializing in uterine cancer so she went on the assumptoin that the pathology was right from my hospital.  The next thing I find out is that Dana Farber disagreed with my hospital and asked for more slides,  I get a call from this second opinion oncologist from Dana Farber at night and she actually explains the situation, on the phone for 40 minutes.  We agreed that we needed to get a third opinion. So my slides went to Sloan Kittery and they agreed with Dana Farber.   Now the diagnosis was still uterine cancer stage 1A but grade 3 (what D&C pathologist said) not MMT.  The chemo process was still the same.  But this weighed in on the radiation

both big cancer hospitals for my cancer now was chemo first than consult for radiation.  So now my hospital's head of radiology who handles all uterine cases sends me back to Dana Farber to talk to the head of gynecological radiation.  This is what she shared (another 40 minute appt)  I did have a difference of opinion on Lymphascular invasion.  Dana Farber insisted no as they did it twice with extra slides,  original hospital said yes.  She said you do external pelvic radiation to get at the lymph nodes.  Not a general area as it is targeted.  You have to have good reason to do external pelvic radiation.  Since all my lymph nodes and this extreme number were all positive the pelvic radiation wouldn't serve any clinical reason.  She said that the long term impacts for my organs and the chance of lymphodema were very high (note if you are skinny or not overweight,  it is harder to protect the other organs she sid.  This is the time being overweight helps).  So this went back to my local hospital and we decided no radiation.

 

The morale of the story here is I created an expanded treatment team through my pushing and my local hospital was thankful. 

Go back and ask for suggestions on second opinion and i was told even with the sandwich method i had a while to decide as you have 3 x3 9 weeks before you would add it

good luck and get the information that makes you feel comfortable

 

note  i did have internal radiation as that targets the vaginal cuff where history has show a higher chance of recurrence and my radiologist and Dana Farber's head both said it brings the chances way down.  That radiation was a walk in the park for me compared to the chemo