Need some advice...UPSC STAGE IIIC

vbpeterson13

My mother was diagnosed with UPSC stage 3c in august of 2013.  She had 6 rounds of chemo and then radiation.  By the end of radiation treatments (March 2014) she started to complain of neckaches.  She put it off thinking that she would wait until her radiation was over to see a chiropractor.  The neckache continued after radiation so she went to her chiro and adjustments were not working.  In the meantime she saw her oncologist in April 2013 and he told her that she was in remission.  We were elated with the news.  At that appointment, the onocologist ordered a cat scan and told her to wait for a call to confirm her appt.  She never got a call.  Three weeks pass and she went to her family dr to have her neck looked at.  The dr took an xray which showed a mass on her spine and a fracture.  Dr sent the X-ray to a neurologist he ordered a cat scan.  Cat scan showed tumor on her spine, spots on her liver and pelvic lymph nodes. The neurologist contacted her radiologist and he ordered a PET.  The results confirmed cancer had MET to all three locations.  Oncologist was made aware of the results.  Oncologist office called to make an appointment 5 weeks after PET results!!!  She is starting radiation on the tumor on her spine on Monday but what about the lymph nodes and liver???  Since last week a hard lump has been growing from her abdomin and is getting larger everyday.  The radiologist said it is her liver.  I feel like we are losing precious time.

1st question:  Should we be searching for a new oncologist??

2nd question:  What should we be doing??  We feel lost on a path we should take, questions we should be asking, what we should be expecting?

Please, any advice would be so helpful so incredibly helpful!  

Carrie

debrajo

UPSC

I am UPSC also.  I am so sorry for what all of y'all are going through.  Just my opinion, Get Her To Another Onc/Gyn...NOW.  UPSC is nothing to fool around with and five weeks is waaaay too long.  I'm not knowledable or elegant with words, but she needs to get that liver checked out now.  Ask the Radiologist to help you, maybe he can pull strings is he knows she has to wait five weeks.  I'm sure the others will be here soon Ro10 is the expert on UPSC.  Wish you all the luck in the world...God Bless.  Debrajo 

Kaleena

Second Opinion

If you are asking, then you know the answer.  Always go with your feelings.   Waiting to give you results after five weeks is NOT acceptable.   You have to be  your own advocate.   Get a second and a third opinion until you find someone you are comfortable with.   They may give you the same answers, but you need to find someone who is compatible with your mom.  My best to you and your mother.  You need to find someone to answer all of your questions and all of the concerns pertaining to your mother.

My best to you and your mom.

Kathy

It happened to Me

Kaleena said:

Second Opinion

If you are asking, then you know the answer.  Always go with your feelings.   Waiting to give you results after five weeks is NOT acceptable.   You have to be  your own advocate.   Get a second and a third opinion until you find someone you are comfortable with.   They may give you the same answers, but you need to find someone who is compatible with your mom.  My best to you and your mother.  You need to find someone to answer all of your questions and all of the concerns pertaining to your mother.

My best to you and your mom.

Kathy

I have UPSC as well and second opinion is a MUST.  Does anyone know what ever happened?  Am curious to know what Carrie decided.

SUNGRANNY

Second opinion

Dear Carrie,

I too was diagnosed with UPSC.  I went for a second opinion, and had my records sent to Memorial Sloan Kettering to consider for a third opinion. It's your mom's right, so she can work with a provider she trusts.

Best to you and your mom,

Sungranny