Recurrence

rae_rae said:

Many thanks! Dr. Lane called
Many thanks! Dr. Lane called today to also give me the report and wants another test (mri, pet, ct or ultrasound, not sure yet)in a week or two. As he is not entirely confident. I suggested the 2 docs get together and come up with one plan. I don't think it has all sunk in yet.

Thank you for your thoughts, prayers and well wishes and may God bless you all.
Rae

yay!
Doing the happy dance for you, rae rae!

Sounds like a fur ball. I told you not to give your cat that bath!

: )

KatfromFlorida said:

Rae_rae
Congrats on the wonderful crazy news!!!..... I am so happy for you I have read many of your posts as I am pretty new here and have been sending hopeful prayers your way...
My surgery is next month for a partial kidney removal on my right side and right now I am trying to just continue with life as usual, not always easy but I cannot imagine what you have been going through.... Much continued good news and happiness

My very best to you

Many many hugs
KatfromFlorida

Rae Rae - can you give us an update?
Hi Rae Rae - what is the latest news? On your last post you mentioned getting lined up for more tests. Hope all is well.

rae_rae said:

Thank you
Jane, thanks for the information - I can't imagine it coming back TWICE. Do they consider this as mets or just local recurrence, and what is the difference? Jamie, from what I have read (which has been very little on the subject) it's usually caused by negative margins or imcomplete resection. According to my path report, I had positive margins. The only thing on my path report that gave me caution was that a 1mm spot escaped the kidney capsule.

The tumor is attached to the fascia or connective tissue that surrounds the now empty space where my kidney was. My orginal tumor was on the top pole of my left kidney butting against my spleen and pancreas but still contained within the kidney capsule. It was approximately 8 x 9cm. My path report came back as grade 3, stage 2a.

My GP and I are both amazed at the rate of growth - my surgery was 9 months ago so 3 x4cm is rapid growth. My insurance case worker told me to contact a local onocologist asap and have them refer me. She said they could refer me to Cleveland clinic as long as they have good clinical reason why I should go. Actually I am happy to see a Dr. within my network as long as they have experience with RCC. It's just trying to find one that seems difficult. I have gone to the Kidney Cancer Association website twice and both emailed and called the nurse hotline as they can provide info on doctors in my area that specialize in RCC. The first time I contacted them was last fall before my nephrectomy and I never got a response. I tried again on Friday so we will see if anything comes of it.

In the meantime, anyone that has information would be greatly appreciated. I live in a very small town in N. Michigan so my resources up here are limited.

Thanks again,
Rae

Thank you
I just responded to your previous blog and found your response regarding your
pathology. I just discovered it. I absolutely understand about limited
resources in Michigan. I also live in a small town in N.Michigan. We've
had to travel many, many miles to doctors and for my surgery down state.
It's brutal. I will keep you in my prayers. We are only less than 90
miles from T.C. You might check on specialists in T.C. (Munson Hospital).
It's a great hospital with wonderful doctors. I don't know how far you
are at this point with your care since your last post in July, but wanted
to respond again.

Good luck, and remember to stay "Proactive". Will follow your responses.

lkhof9

rae_rae said:

Hello
I see I've been neglecting this a little bit - my mom, who has late stage dementia and lives with me, has had some bad days the past week and I have had a bad case of vertigo that seems to get worse by evening the past week as well so my posting is going to be limited until I stop feeling like everything is spinning :-)

The doctors decided to go ahead with the original plan and I will have my next CT scan on Sept 14, with follow up and labs on Sept. 21 with Dr. Brinker in Grand Rapids. He is the medical oncologist. On a happy note, I saw my GP this week and she hugged me three times when she found out I didn't have cancer - she was surprised and said it was the best news she had all day.

I am going to start some motion sickness pills tonight to see if I can stop the vertigo. To all newcomers and well wishers - thank you - and to the person that posted from N. Michigan (sorry I forgot your ID)- I am also not far from T.C. but G.R. seemed to have a bit more to offer than T.C. - keep us posted on what's happening and feel free to send me a message here.

Rae

This is a topic we all think about. A couple of days ago I had a debate about it with my Wife, who knows more than I do about most things (but not golf). This was because her much loved cousin is in a bad way in London with liver melanoma. He's just survived a massive heart attack - he's a great fighter - so this was a terrible blow, given that he survived malignant melanoma (on his skin) about ten years ago.

I asked: how can you know whether you're dealing with recurrence, as opposed to a new cancer? I speculated that this could be crucial since the treatment might be different. My Wife was disposed to doubt this but neither of us knew. So, I did a spot of investigation and turned up a paper that happened to address precisely that question. I Googled "de novo v recurrence" and instantly hit on a paper entitled: "Definitive discrimination of cancer recurrence/metastasis versus de novo cancer formation" by Finkelstein et al. in the Journal of Clinical Oncology in 2005. I was delighted. It answers many of my questions. A few sentences in the Abstract give the gist:

"Distinguishing recurrent cancer from independent formation of a new cancer can be problematic."

"Major treatment decisions may depend upon the certainty of this differentiation."

The investigation the authors carried out vindicated the new approach they adopted and confirmed a new way of distinguishing new cancers from metastasised (i.e. recurrent) ones.

"Conclusions: Discrimination between cancer recurrence/metastasis versus new primary cancer formation can be objectively and definitively accomplished by comparative mutational profiling if microscopic analysis and special stains cannot provide adequate certainty."

As they recognised, "Major treatment decisions" may flow from the nature of the cancer - whether it's new or metastatic.

T.

PS I hope this may be a helpful distinction in the case of my Wife's Cousin and I know all here would wish him well as he enters a life/death course of chemo.