New Diagnosed, Stage IV - Need Answers

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I am a newly dx 65 year old with Uterine Stage IVb cancer.  I am looking for any input  and suggestions you may have as a start down this road.  My story, 6 years ago, I was dx with Stage 1 uterine cancer, low grade which was found on a nodule after having a complete hysterectomy.  No chemo give, just follow up with Oncologist and my GYN doctor for 5 years.  Speed forward 5 +years - last November I went to my regular doctor complaining of nausea - thought it was due to eating fatty food.  Change diet, added probiotics -- but came back 1 month later - having some the same issues.  At this time, had my annual - all tests came back find except for low platelets and re-taking test in a month.  Recommended seeing a GI - doctor - which I did but this was during the holidays so I had to wait till after the 1st year to find an opening.  See GI doctor - she looks over all of my blood work, sees nothing irregular and suggest various things that I could do.  She recommended taking a sonogram which I did.  Get results back at end of January - mass on my liver, cyst on my kidney, gallstones and ascites.  Review results with my GYN and internist - they don’t believe results - they immediately have me see another GI.  This GI wants a full MRI - results of MRI are:  gallstones, cyst on kidney and pancreas and now  spots/seeding in my abdomen- liver mass is gone.  My doctors immediately try to get me back into my original Oncologist at UCSF. One trip to emergency room, lots of blood work, ascites removed and tested before I actually see the Dr.   Took about a 2 weeks to see her, she reviews the tests - she doesn’t believe that it’s the uterine cancer but rather a new cancer - not after 6 years and the type of cancer it was.  Ascites is benign and all tumor tests negative except CA-125 which is at 72.  She orders a CT scan because MRI not good enough for biopsy- another week delay.  I finally get the results 10 days later.  In trying to get results, following up with her office should have realized something was up as I was told that my case was going to the tumor board. Doctor called last night - it is in fact the same uterine cancer of 6 years ago but it is in my abdomen now.  

 

In discussing my treatment options- my best option was clinical trials or immunology. No details yet.  The clinical trial office in fact called me before my Doctor did - leaving a message. No surgery for me- as she said the nodules were too small and numerous.  So I will be calling them this morning to set up an appointment.

 

Questions:  Would you get a second opinion?  UCSF is suppose to be one of the best around here.  Stanford is close by but they don’t appear to have any clinical trials which meet my criteria. I am looking for who the best doctors are that treat this cancer- even just to get their input.

 

In looking around for other clinical trials, there were some others - back east -- does anyone know anything about other promising clinical trials?

 

What else should I be asking- I read about trying to understand the genetic background of the cancer to get better treatment options.

 

Any input and suggestions would be greatly appreciated.  I knew I had something - but this is not what I expected. It’s been a long two months to finally get a dx which I didn’t expect.  Totally naive.  I’ve completely changed my diet, started to add supplements and trying to get my head straight.  So I’m reading and trying out as much can as quick as I can.  I was reading all the old posts and they were very helpful.

 

Comments

  • paris11
    paris11 Member Posts: 159
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    Hi Judi, I am so sorry for

    Hi Judi, I am so sorry for the recurrance.  Living with cancer can be exhausting.  I have a similar cancer history.  I had stage 4B in 2008 and carbo/taxol put me in remission.  After two more tx with carbo/taxol in 2010 and 2013, the cancer recurred again in 2015.  I have been on megace and tamoxifin for the past twenty months.  I feel fine.

    Definitely, go for 2nd opinion.

    Best,

    Connie

     

  • derMaus
    derMaus Member Posts: 558 Member
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    Always Get a Second Opinion

    ALWAYS get a second opinion! Especially in cases such as yours, where there's been such a long elapsed time between the initial cancer and the 'relapse'. Technology and testing changes all the time, and a different doctor may have a different perspective. Just out of curiority, I wonder why chemo isn't being recommended, as you haven't previously had it? You could also be a candidate for tumor assay testing, since you have live tumors for them to test. Please keep us posted, best wishes, B

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    Judi, I don't blame you for

    Judi, I don't blame you for being shocked with this diagnosis after such a long stretch of remission!

    You may want to try contacting MD Anderson in Houston for a second opinion. It's a top rate cancer center.

    I also wonder why chemo is not an option for you? It's usually the standard of care for uterine cancers. Did the doctors discuss why it's not an option?

  • AmyByTheSea
    AmyByTheSea Member Posts: 6
    edited March 2017 #5
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    Hi Judi

    I'm so sorry to hear your diagnosis.   I would definitely go for the second opinion. 

    Wishing you only the best!

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
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    So sorry to hear

    Getting a second opinion is always a good idea.  There is a clinical trial called MATCH that my doctor starting the paper work for me.  We stopped it for now when he found out that the Radiology-oncologist was fairly confident that he could treat my renegade tumor between my spine and vena cava.  If you qualify they send a kit for a biopsy and they try to match your tumor with 22 different kinds of meds that might work.  

    Hugs and prayers, Lou Ann

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,388 Member
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    Judi, I am so sorry.  I

    Judi, I am so sorry.  I cannot even imagine what you are going through.  I would recommend getting ready to fight for yourself.  Push the doctors, demand answers.  I hate to hear that you had to wait until after the holidays and that is because people rush to get in to places to 'use up' and monies for that year when there are people, like yourself, who really needs the attention. 

    Please fight, fight, fight and know that we are here for you.  

  • Judi925
    Judi925 Member Posts: 3
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    Follow-up

    Thank you for your input - it really helps me trying to figure out what I should be working on.  Definitely going to go for a second opinion - I did talk to MD Anderson and started the process if I decide to go there.  Dana - Farber has a 2nd opinion service that can be done remotely.  That might be an easier way to go right now.  Not sure why no one  talked to me about chemo options available - I did leave a message for my Onc to call me  or set up appointment to discuss everything once I meet the clinical trial people. Never heard of tumor  assaying - will look into that.  Realize I need to know much more detail about my cancer to evaluate any treatment option. Thanks again

  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    Yikes! Judy!

    What a rollercoaster you are on!   I am like the others in getting a second opinion.   I would step away from your current facility and find another one.  I had to do the same and it worked out for my benefit.  Getting pushed from doctor to doctor is quite annoying and anxiety filled.   Do what you feel you need to do and find the right doctor that will listen to you completely and then make your decision from there.

    I wish you all the best in finding the right diagnosis and treatment plan for you.

    Kathy

    P.S.  If you are considering a second opinion, get all of your records from all of your doctors, including imaging.  Once you find a second opinion doctor, you will want to get your pathology slides too.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited March 2017 #10
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    Walking away

    i walked away from my first oncologist and infusion Center when I had a recurrence and I have never regretted that decision. It was chosen because it was a lot closer, but I got very little time with the doctor, the nurses did not like my husband waiting with me, and it was so crowed, you had to pull in your legs if someone else had to go to the bathroom.  My current Cancer Center is a longer drive but so worth it.  The care is unbelievably different and my oncologist is the very best.

    Hugs and prayers, Lou Ann

  • Sandrine04
    Sandrine04 Member Posts: 76
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    paris11 said:

    Hi Judi, I am so sorry for

    Hi Judi, I am so sorry for the recurrance.  Living with cancer can be exhausting.  I have a similar cancer history.  I had stage 4B in 2008 and carbo/taxol put me in remission.  After two more tx with carbo/taxol in 2010 and 2013, the cancer recurred again in 2015.  I have been on megace and tamoxifin for the past twenty months.  I feel fine.

    Definitely, go for 2nd opinion.

    Best,

    Connie

     

    Where are your metastasis

    Where are your metastasis paris11? 

    I have carbo/ taxotere is very difficult

  • Judi925
    Judi925 Member Posts: 3
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    Thanks for your thoughts

    Thank you all for your input.  It was just such a long time before I had a final dx.  I have such a good relationship my internist and GYN - that as I went through the process - they have been there for me the whole time.  I talked it over with my GYN -- she has me lined up with another Oncolgist if I want to make the switch.  She said give my cancer center a couple of days - she said they are the best around and I need the best now -- but she would help me move if I wanted.  I want them to see me as a person.  Thanks for being there.  I will let you know what happens this week.

    Judi