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New Doctor...learned some things...

dhs1963's picture
dhs1963
Posts: 427
Joined: May 2012

It was early Thurs Morning...about 5:45 AM when, while driving to a neighboring metropolitin area to visit a Doctor...I was thinking...I am driving at this hour to see a Doctor...something must be wrong with me....and there is...Metastatic Kidney Cancer.

For refersher, in January, I was kicked out of the Familial Kidney Cancer study at NIH -- they are reducing thier numbers, and anyone without active cancer (e.g., NED) is being "discharged".  They referred me to a local Dr., but I could not find anyone who was a patient of that Dr.  From here, and from smartpaients, multiple people recommended one Dr:  Dr. Hammers at Hopkins.

Thursday morning, I had a consultation.  He spent time with me, he looked over my records, and he answered my questions in language I could understand (I am a geophysicist). 

And he will be following me.

 

I learned how sarcomitoid differentiation makes the cancer more aggressive:  basically, the cells do bond as tightly, and the spindly morphology lets them escape...like a fiborous mineral compared with a lattice mineral structure.  (it works for me, don't judge).

He also explained how the cancer cells progress:  they die off in time, but not on an equal amount.  However, a half life might be a good analolgy -- and that would explain why some people (few) get mets after many many years.

And, he explained how I am lucky.  He said that, in some people, the mets come in waves -- surges like the first met is quickly followed by many of others.  For these, surgery is not optimal.   In others (which includes me), you will get individual mets....with those, the optimal treatment is to cut them out.  If my disease stays that way, they can manage it with periodic metastectamies. 

And I should expect future mets.  There is a very low likelyhood that nothing will reappear, but as long as it is one at a time, I should have a decent outcome.  So, 5yr survival rate might be high (> 50%), but disease free is low (~20%).

 

This all makes sense to me, and is consistent with what I have read.  I think I like this Doctor.

Jojo61's picture
Jojo61
Posts: 788
Joined: Oct 2013

Sounds like a very thorough doctor. He had some very interesting information. Glad you like him!

Can you tell me what your stage and grade was at time of nephrectomy?

Jojo

dhs1963's picture
dhs1963
Posts: 427
Joined: May 2012

I was called stage1 grade4 w/ sarcomitoid features, but in reality, I probably had the lung met, but it was not seen on x-ray (it would have been seen on CT scan then, probably).

 

The primary tumor was pT1b

Jan4you's picture
Jan4you
Posts: 399
Joined: Oct 2013

Hello!

Just wanted to offer MY support with understanding.

It is always good to be partner with a good doc. You seem to be ready for this journey/fight. Just wanted to let you know i am on your side! I appreciate your analogies.

Warmly, Jan

dhs1963's picture
dhs1963
Posts: 427
Joined: May 2012

My cancer was found incidently on an abdominal ct scan on may 1, 2012.

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Hi dhs,

It's not easy making sense of the workings of cancer, so to have a doctor explain it in terms you understand is HUGE!  So happy you have found that in your new doctor. 

I am sorry to hear about the mets.  Having confidence in your medical team will hopefully lower your stress and anxiety, if only a little, allowing you to stay focused on your treatment(s) and coming through them better and stronger than before. 

Keep up that great attitude you have and you, my friend, will do just fine. 

Hope you'll keep us posted. 

Sindy

dhs1963's picture
dhs1963
Posts: 427
Joined: May 2012

As long as they occur one at a time, they are not scary.  Donna has had many removed.  For me, it is a met so far, with the likelyhood of more mets, but hopefully one at a time.  Surgery sucks, but it is better than Stutent, IL2, and of course death.

foxhd's picture
foxhd
Posts: 2232
Joined: Oct 2011

Cancer that is monitored and managable is not a bad thing. It becomes chronic disease like diabetes. One can live to and die from a healthy old age. That is all many of us could ever ask for. Good for you. I like it.

one putt
Posts: 72
Joined: Sep 2012

Glad you found your experience with Dr. Hammers to be a positive  one. He's the only oncologist I ever saw. After our first meeting I never felt the need  to get a second opinion. The late Chris Battle (Kidney Cancer Chronicles) a contibutor to this forum, once compared getting advice from his former doctor at Duke and Dr. Hammers as the difference between driving a Chey and a BMW. I have never had a negative experience with him that others have complained about with some of the doctors they have consulted. Fox credits his doctor with saving his life. I feel the same way about Dr. Hammers.

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