Following up on my visit with you on Monday, September eight involving my PET-MRI scan results from NIH: Last week I became advised by Corrine Keen, Dr. Apolo's medical nurse, that I became required to signal a consent form before NIH would possibly send you copies of my scans. I have since signed and again the shape, so optimistically make certain you be receiving these scanssoon. I can be most interested to put attentiveness of your stories as soon as you've got reviewed my most updated scan.
I had understood from our conversation on September eight that you were going to examine on the ensuing:
1. What is the popularity of tissue from my melanoma being sequenced? Has either GW or NIH sequenced my melanoma, and in that case, what are the implications? If not, is there sufficient tissue available to hold out a genetic sequencing? The 4 sources of tumor available for biopsy can be as follows: 1) the fine needle aspiration at NIH on nine/5/thirteen; 2) the bladder and nodes eliminated for the duration of my radical cystectomy at the University of Chicago on 5/2/12; 3) the TURBT performed by Dr. Fred Hendricks (GW MFA) at GW Hospital on 1/5/12; and 4) TURBT performed by Dr. Hendricks at GW Hospital on 12/1/11. FYI, I have checked with my insurer (United Health Care), and am advised that the money of genetic sequencing is covered, given that you succeed in a preauthorization, and either send it to an in-network lab, or succeed in preapproval to send it to an alternate lab. According to UHC, the ensuing labs are thought-about to be within the UHC network:
2. Regardless of whether there's tissue available from one among the older biopsies, does it make sense to have the tumor in the enlarged node biopsied and the tissue analyzed? Or is it sufficient to assume that the mets melanoma in that node is actual to or sufficiently comparable to the subject topic that became biopsied at NIH on Sept. 5, 2013?
3. I to take into account that there's no definitive statistics on effect of lymphadenectomy [removal of the cancerous lymph node] and its contribution to survival on patients who continue to have nodal positive disease after chemotherapy. I have reviewed the articles with the ensuing links, and strong looks if I need to further explore the probability of lymphadenectomy.
EAU 2014 – The curative technique of lymphadenectomy after response to chemotherapy in patients with urothelial carcinoma presenting with regional or distant nodal metastases: Analysis of a assortment from a tertiary melanoma centre
I understood your stories were that the statistics did not expressly advisor lymphadenectomy in my case, and that the negative aspects likely outweighed the benefits. Is that accurate? On another hand, I have a troublesome time understanding why cutting out a turning into tumor is a negative thought. If I wished to further trust lymphadenectomy, with whom your you endorse that I speak?
4. You really helpful that I loosen up and wait unless my next scan (presently scheduled for 11/18/14 at NIH), and if that showed that the node became over 1.5 cm on the quick axis, that I need to trust one among immunotherapy medical trials. Do you assume that course offers me the greatest probability for expanding my prominent survival?
Thank you for your ongoing care.
Last night she responded with the ensuing:
I haven't received the scans from NIH yet but I've attached the genetic findings out of your tumor from what Dr. Apolo has sent. [chart follows]
Gene Accession #
coding seq distinction
The mutation is p53 which is not commonly (as of yet) an actionable goal per se. I don't assume there's enough cells from the FNA [fine needle aspiration] to do greater sorting out and the molecular sorting out that the good option fits our desires (if we are to do greater sorting out) can be Foundation One Medicine or Caris Life Science sorting out, which are sorting out for drug objectives (as against the genetic tests run by Integrated Genetics or Myriad, etc which is used greater for hereditary sorting out or diagnosis, as an example).
While I do to search out merit in lymphadenectomy for localized disease, your area of lymph node involvement is for sure complicated to resect out, and this can be the sector of cardiothoracic surgery (just because of the place it is located) and just because these are underneath the clavicular (collar bone) area, it is perhaps very complicated to traverse (unlike say in the belly – continuously a retroperitoneal lymph node dissection is performed) just because of the collar bone (which connects your shoulder to the breast bone, mandatory nerves/blood vessels in a cramped space in that area that could go away your brachial plexus weak). We mostly follow the guidelines of thoracic surgery (as an example, for lung melanoma) the place involvement of these upper level supraclavicular nodes would mostly preclude surgery as an option.
I acknowledge that it's tremendous robust to "loosen up and wait" in the face of these circumstances and I am painfully awake about the uncertainty that this entails. If we did not have the immunotherapy option and the burden of disease is much greater (which means the size is much bigger and greater disease is seen on your next scan), then I would prefer chemotherapy still (therein lies the next question of which chemo). However, if the adenopathy has simply ever so a little bit greater but to the facet the place you're eligible for the trial, then I assume it's well value thinking of it just because of toxicity reasons (possibly less toxic perhaps).
Take care, JBA
This morning I'm still mulling over this hints. I don't to take into account the hints from the genetic findings, and shall be performing some further readings about understanding genetic hints mostly, and the p53 mutation specifically. Also, I'm a bit puzzled just because I became previously told by a few of my medical doctors that my bladder melanoma had a massive form of mutations; whereas this genetic discovering identifies only one mutation. Maybe it became just since the genetic screening did not test for all mutations, or just because it stopped after discovering the primary mutation, or maybe it's just because my metastatic bladder melanoma has only a single identifiable mutation.
I'm also mulling over the hints involving lymphadenectomy. I to take into account Dr. Aragon-Ching to be saying that, if the node were in specific places, lymphadenectomy would possibly be a smarter option, but given it's most updated location, the negative aspects outweigh the benefits.
I have no difficulty waiting and seeing, given this is commonly the the good option option. Heck, I've been doing that for greater than two years; waiting and seeing for 15 months after my RC surgery, unless the distant nodes popped up; get nuked with ddMVAC chemo; then wait and spot for an alternate year. If waiting and seeing is for sure the the good option course, then I'm all for it. It's simply that I'm not absolutely persuaded at this facet.