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Uncle Ned, I miss you...

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

Round 1 was 8 years ago I had my kidney and 7 cm Grade 4 tumor removed.  I was told I was NED.

Six month later, Round 2, there was a solitary met on my lung and part of a lung removed.

 For the last 7 years ( 2645 days), there was no evidence of disease.  My Oncologist had said, the risk of CT is now greater than the risk of recurrance at 1 year, so I did not have a scan last year.

For the last few months, I had been having GI issues.  In addition, I lost a lot of weight -- 25 lbs since COVID began, and 15 lbs in the last two months. On friday, I saw the GI doctor, and she ordered at CT.  CT was yesterday's terday at 3.  Never a good sign when they call you less than an hour after the CT.  The GI called and told me that I have "Diffuse metastatic disease in the abdomin and pelvis, with a lesion on the liver".  

Round 3 begins.  

Unfortuantely, the doctor I really liked, Dr. Hammers, is no longer in my area.  I emailed him, asking if it is possible for him to consult with my care team.  (precovid, I might have flown to see him).

 

I am trying to get an appointment with Dr. Atkins at Georgetown (my area).  Unfortunately, I know of no Kidney cancer specialists in Northern VA.  I also do not know what has changed with treatment....

Bay Area Guy's picture
Bay Area Guy
Posts: 454
Joined: Jun 2016

I'm on the opposite coast from you, so I can't recommend a doctor.  I did look up the Georgetown doctor and he seems like an excellent choice.

Deanie0916
Posts: 331
Joined: Nov 2016

I don't know much about the different doctors or treatment options but I do know we all will help and stand with you however we can!

Allochka's picture
Allochka
Posts: 929
Joined: Nov 2014

Sorry to hear about recurrence. Unfortunately I can't recomend anything as well. But I wish you luck in your fight!

Recently there was a post by Stage 4 girl who was in very bad condition when initially diagnosed. Now, year later, she is NED due to systemic treatment!

Treatments do miracles these day.

Good luck to you and hugs!
Alla

eug91's picture
eug91
Posts: 263
Joined: Jan 2019

Oh man. So sorry you're having to deal with this. But you beat it back twice before - you'll do it again. We're here for you. 

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

It is not RCC.  Rather is is currently an undifferentiaed adenopathy -- mets to liver and lymph nodes.  It is suspicious for Upper GI or Pancreatic/Bile areas.

Oh well.  

Allochka's picture
Allochka
Posts: 929
Joined: Nov 2014

Oh... Don't know what to say.

What is the next step? Upper gastroscopy? Another CT?

Uncertainty is terrible, wish you to determine what is it and start fighting!

 

 

eug91's picture
eug91
Posts: 263
Joined: Jan 2019

I'm sorry, dhs - that sucks. It must've been a shock. We're here for you on this next fight. 

Sending you positive thoughts and hopes. 

 

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

Met with GI oncologist.  Next step is to get an endoscopy to find the source of the cancer.  The path report is suggestive of either upper GI (Stomach/Esophogus) or Pancreas/Bile.

The good news is the metastatic tumor load is not that high, so we can spend the time to find that.  

After that, within two weeks, I will probably start treatment.

Same goals as if it were kidney:  stop disease progression for a while, then regroup.

Allochka's picture
Allochka
Posts: 929
Joined: Nov 2014

Wishing you all the best in this next fight. You did it once, and will definitely do it again!

eug91's picture
eug91
Posts: 263
Joined: Jan 2019

You're gonna do great, dhs. 

lobbyist0724's picture
lobbyist0724
Posts: 424
Joined: Sep 2016

I sorry to hear the news, I have been reading your post since I joined in 2016. 

I wish you find out what it is soon and it will be very treatable! 

rtu
Posts: 1
Joined: Nov 2020

I. know it's a bit far but might be worth considering.  I have been going to Penn Medicine in Philly since June of 2019.  Dr.  Naomi Haas is my doctor and I would definitely recommend her.  If you get the same treatment as me (Pembro & axitinib) you would only have to go every 6 weeks.

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