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MD Anderson

jjtrim's picture
jjtrim
Posts: 16
Joined: Mar 2019

Hello All,

My mother is experiencing a recurrence of her UPSC (originally stage 1a with no adjuvant therapy recommended after radical hysterectomy).  Fourteen months after surgery, her CA125 jumped to 240 and the resulting pet scan showed widespread metastasis to multiple lymph nodes, mostly around her lungs, and nodules to her peritoneum and omentum. She is currently being treated with 6 rounds of carbo/taxol at Kaiser in Los Angeles. Her gyn-onc was very nonchalant about the whole situation and has not been available to us despite multiple attempts.

One of my biggest concerns is that absolutely no genetic/genomic testing has been done on the original tumor.  We do not know if she is HER2 positive, MSI-High, any Lynch markers, nothing regarding progesterone/estrogen receptors, nothing about the makeup of her tumor, zilch, nada.  When I asked, I was told (by the N.P. since the gyn-onc was not able to meet with us -again) “…well, we could do it now, but why don’t we focus on getting through the chemo.”  At this stage in our battle, I know she is receiving the current standard of care for UPSC (carbo/taxol), Kaiser or not.  I know that she would go through these 6 rounds regardless of her genetic markers, etc.  Still, I’d like to get this thing tested sooner than later and I would sure as heck like to talk to the oncologist for once.  I just want to make sure my mom gets the best care, that we are comprehensive and think of everything.... and I’m dubious of Kaiser – have been ever since they advised NO chemo or brachy for a grade 3 cancer (even if it was stage 1).  

So for all these reasons, I’m looking into getting a second opinion from MD Anderson.  I see they have an entire department dedicated to second opinion pathology for gynecological cancers.  I know many of you have been patients at MD Anderson and am wondering if you have anything to offer or share?  I’m guessing they would need my mom’s current oncologist to coordinate sending the sample? And are they likely to do more testing than we would receive at Kaiser (if/when they finally approve it)?  Will they have more insight into targeted therapies than a hospital like Kaiser?  I’m willing to travel to Houston if need be (we are in CA) and am willing to pay whatever if it means getting my mom better care, better quality of life, more time to see her grandchildren grow up.  I just wanted to know what you ladies think?

 Thank you all for sharing your experiences here.  I’ve spent many a long sleepless night reading about your experiences and inspired by your strength.  I have been visiting the board since my mom’s diagnosis in 2017 and I too am so sad about Pinky.

CheeseQueen57's picture
CheeseQueen57
Posts: 781
Joined: Feb 2016

I don’t have the same dx as your mom but when I reoccurred 8 months after my stage 3c, grade 3 endometrioid cancer I sought a second opinion at MD Anderson in Houston. I’m currently treated at Fox Chase in Philly. I was very pleased with MD Anderson and they will help you get your mom’s record down there. They confirmed my current treatment but I would not hesitate to go back should something change. As far as how they compare to Kaiser, I can’t help you there. But you may be able to switch doctors or locations for your mother and may be able to find a better doctor within that system. I know some ladies here have been treated at Kaiser. Good luck. Such a good daughter. God Bless you. 

barnyardgal
Posts: 199
Joined: Oct 2017

I didn't have UPSC , (stage 3a, grade 2) but was treated at Kaiser in the D.C. area. My gynecologist oncologist was at MD Anderson before coming to Kaiser and has been wonderful, as has my oncologist. Both are very accessible, though very busy. I've found email has been the quickest way to reach if I have a quick question. Can you ask for another doctor at Kaiser? I would raise the concern that at 1a, grade 3 she wasn't treated more aggressively at the outset.

zsazsa1
Posts: 291
Joined: Oct 2018

I sent you a message.  Look for the link at the top of your page.

Rosesforever's picture
Rosesforever
Posts: 31
Joined: Sep 2018

I sent you a private message. 

Armywife's picture
Armywife
Posts: 266
Joined: Feb 2018

What a wonderful daughter you are!  Praying all the best for you.

I was diagnosed here in San Antonio with Stage IIIA Grade 1 endometrioid endometrial adenocarcinoma after hysterectomy.  Chemo and radiation were recommended.  I asked for a second opinion at MD Anderson.  I'm not sure of your mom's health insurance situation, but the doctor who handled my referral was my primary care doctor, not my gyn/onc.  MD Anderson requested the slides directly from the hospital here, and their tumor board reviewed the pathology. They saw things that were missed here at home, and changed my diagnosis to Stage IVB, Grade 2.   My gyn/onc at MD Anderson met with me and recommended the same treatment plan prescribed here.  After chemo we reviewed again and the tumor board met again to decide whether to pursue radiation.  We chose to wait for recurrence to do radiation.  I follow up here at home for physical exam every 12 weeks and see MD Anderson once a year for scans.  They are amazing there - not perfect, but really great.  The best part is having so many staff review and discuss the case - I think they had 28 gyn/oncs when I last visited.

I feel your frustration with your current gyn/onc.  I cannot imagine being stonewalled like that in this incredibly stressful time.  The testing should have been done, as apparently some cancers are resistant to certain chemos.  Your mom should not be put through something that may not help her.  You have every reason to insist on a new doctor at Kaiser and a second opinion immediately.  

jjtrim's picture
jjtrim
Posts: 16
Joined: Mar 2019

Hi All, 

I just wanted to update you all on my mom's treatment since the advice I have received on this forum has given me the knowledge and courage to advocate for her -which has ultimately led to an improvement in her treatment plan.  I made a fuss to Kaiser (specifically my mothers gyn-onc NP) about my mom not having any genetic testing done and she was swayed to initiate testing - even though her original inclination was to wait (wait for what, I don't know as my mom is stage 4).  Today we recieved news that she is Her2 positive and will be getting Herceptin along with her 4th chemo infusion of carbo/taxol.  I'm thrilled she will be getting a more targeted therapy which she would not have received unless we pushed for the testing. I seriously do not understand why we needed to ask twice, but so it is.  My mom currently has 3 sessions of carbo/taxol under her belt and is doing considerably well with the chemo so far.  Her CA125 has not come down as much as we'd like (252 prior to chemo, 303 after 1st chemo, 284 after 2nd chemo), though I'm aware that the CA125 is a fickle and unreliable marker, I'd still love to see a dramatic drop!

I have some questions about the Herceptin but I think it makes sense to start a new thread regarding that.  

In any case, thank you so much again for sharing your stories. 

Wishing every one of you happiness and health.

SF73
Posts: 252
Joined: Oct 2017

So glad to hear that the geentic testing led to a more targeted treatment, jjtrim! Your mother is very lucky to have a daughter who is continuously doing research to find ways to improve her treatment plan. Best of luck! Please keep us up to date.

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