Re: My Introduction

Marion...So happy to hear that your daughter is doing well!  Yes, I actually had enlarged lymph nodes at the time of my initial surgery for CC, 4.5 years ago.  The doctors thought my nodes were maybe reacting to the surgery or to the mesh that I had to have implanted because of an incisional hernia.... and I even had a biopsy of one of the mesenteric nodes in 2011 which did not show any disease.  This same node was biopsied last month, this time with a follicular lymphoma diagnosis.  The doctors feel that I have probably had the F.L. for many years....interesting that I still wouldn't know that I have it if not for the many scans for CC.
My very best wishes for your daughter! Dianne

Re: My Introduction

Dianne.....My very best to you as well with the upcoming treatment for F.L.  I don't know much about Lymphoma, but sure is interesting to know that you and my daughter had enlarged lymph nodes and yet there was no correlation to cancer.  Had your white blood count been elevated for some time?
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Introduction

Marion....My white counts have been perfectly normal.  I still wouldn't know I had F.L. if not for my many scans for C.C.  The standard treatment for F.L. is to watch and wait until symptoms present or until lymph nodes get to a certain size, neither of which has happened in my case.  My doctors are still discussing my treatment options, but most likely will continue to wait until my next scan, then make the call to either treat with chemo or continue to watch and wait.  How old is your daughter and what is the location of her enlarged nodes?  Mine were in the abdomen, so not noticeable except by scan.   My best to you both! Dianne

Re: My Introduction

Matt...great news!!!!!
Marion, I did not know your daughter had a diagnosis
Prayers for everyone!
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: My Introduction

Looking back at her medial records, my daughter's white blood count continued to rise for more than 2 years and no physician took note of it.  At time of diagnoses she had enlarged lymph
nodes all through her body, some as big as golf balls.  Retrospectively all the signs where there, but no one caught it early.  My daughter is 39 years old, completed treatments and is in remission/cured.  Dianne, I expect things to work out just fine for you as well.
Lisa, thanks for your concern.  We are in a positive mode, she is young and has recuperated exceptionally well.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Introduction

Hi Dianne,

I'm just now reading your post - I'm so sorry to have missed it!

Yes, amazing doctors and amazing facility. I'm not going anywhere else for medical care from now on even tho it's a long haul from VA to MN!

The only oncologists I saw were while in my hospital room recovering from surgery. I can't remember their names but know it wasn't Dr. Alberts.

I love hearing of others with similar experiences that are still around to share! Best of luck to you!!

-Matt

Dianne.N wrote:

Hi Matt....I wanted to reply to your post because we sound like we've had very similar paths, with the same doctors!, and I'm 4 1/2 years post resection!  My symptoms started right after Thanksgiving dinner in 2009 with severe indigestion.  Then I got the itching and finally an MD friend of mine got me to my local doctor who did an ultrasound and MRI and recommended a major cancer center.  I went to Mayo in Rochester in Dec. 2009 and saw Dr. Gores and then Dr. Nagorney...both amazing doctors who saved my life.   My surgery was Jan. 5 and I chose not to do any adjuvant therapy.  I had a few bumps in the road after the surgery but am pretty much fine now...except that the docs kept scratching their heads regarding some enlarging mesenteric and retroperitoneal lymph nodes.  I finally had a biopsy of a mesenteric lymph node that revealed I have follicular lymphoma which is much more treatable than CC.  I see an oncologist this afternoon to figure out treatment for the F.L.  Anyway, I'm wondering who your oncologist is at Mayo.  I had Dr. Alberts initially but for some reason that I don't understand he has not been assigned to me the last two times I was at Mayo.  (Oh, I take Metamucil every day for diarrhea issues - it helps.) I know this must be very difficult for you with younger kids at home, but it sounds like you have a great attitude.  We learn to enjoy and appreciate each and every day!