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Study Finds Widespread Flaws in Treatment

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

On the front page of NY Times today the following article link speaks of importance in "qualified" docs for the BEST treatment protocol.  It does speak more on ovarian, but see a lot of overlap to any cancer.  Basically get to the best doc, and if not sure get a second opinion, as they can open us up to a very long and cancer-free life.  Remember, most insurance co's will pay for second opinions if you don't have comfort in your present doc.  As well, we have to be proactive and ask the doc about his experience with our type cancer.  Mine is uterine, but MMMT type which is very aggressive and not a lot of docs have this experience.  Therefore, I had to ask lots of questions prior to finding the GYN/ONCOL with this experience.  

http://www.nytimes.com/2013/03/12/health/ovarian-cancer-study-finds-widespread-flaws-in-treatment.html?pagewanted=1&_r=0&ref=todayspaper

Happy reading,

Jan

ConnieSW's picture
ConnieSW
Posts: 591
Joined: Jun 2012

It , and the comments that followed, were interesting.  Of course, it essentially said what we have learned from you and other ladies on this site.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 474
Joined: Mar 2013

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. 

sunflash's picture
sunflash
Posts: 154
Joined: Aug 2011

I'm also thankful that I was referred immediately to a gyn/oncologist. I had never heard of one (first cancer was 6 years ago) and would have just gone along with whatever my doctor recommended. I was still under her care when the uterine cancer, UPSC, was found. She had told me previously that once you've ever had cancer you need to be seen by a meticulous doctor the rest of your life. She said, "I'm meticulous so you'll be coming to me forever!" No problem there! 

 

DrienneB
Posts: 11
Joined: Aug 2013

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

 

nancibee's picture
nancibee
Posts: 50
Joined: Sep 2012

Jane,

I was a Kaiser patient and Dr. Annette Chen, my GYN/Oncologist in Walnut Creek is amazing. I don't know what her experience is with MMMT. I have UPSC and I don't know if Kaiser is an option for you. I loved Dr, Annette Chen and she went to Harvard Medical School I had to switch to Blue Cross and will be seeing Dr. Lee May Chen at UCSF. I don't know much about her.

Hybridspirits's picture
Hybridspirits
Posts: 150
Joined: Nov 2012

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

 

 

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