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Status Updated from Mike (now in the mets section)
Kind of like a TV channel. I’ve moved from my regularly scheduled slot over in Muscle Invasive to a new time and channel here in the Metastatic section.
The big second opinion Review Board meeting with the extended team of surgeons, oncologists, pathologists, fellows, etc. was held this morning to review my case.
It appears that the consensus is now that at least one of the suspect lymph nodes can be biopsied.
They also confirmed what I thought had been very confirmed already and that is that the kidney in fact does have high grade cancer. I swear we knew this weeks ago but apparently the pathologist had just said “highly suspicious for…”. Well now all the experts looked at the cells under the microscope themselves and decided there is no question about that.
As far as the lymph nodes go, they thought they might not be able to biopsy them but now they think they can get to at least one if they have one of the radiological surgeons do it. Apparently, they are all very close to blood vessels but they really want to try. You’ve probably seen what I’m talking about on TV where the surgeon is watching a big x-ray machine while guiding the tiny wire to its target to perform some task. The task in this case is to grab a little sample from a lymph node without messing up anything else on the way in or out.
They are working on scheduling that. So I am in wait mode yet again on that front. We need an emoticon for extreme frustration because I want to use it in about three places in this email. :angry:
They also want a brain MRI. I think one of you may have called them and placed a doubt in their minds that I even have a brain so the MRI should prove that one way or the other. So there! I have that scheduled first thing tomorrow morning.
Actually, due to some recent headaches they want to make sure nothing has gone to the brain because bladder cancer, when it metastasizes typically goes to lymph nodes, bone, lungs, liver, peritoneum, and brain (in that order of risk). I think the headaches are because I am going crazy with all this testing and because I haven’t started on chemo yet when I think that should have been started at the end of last week.
I learned today that the lymph nodes that I thought would be considered local/regional aren’t really. The ones that would have been considered local/regional have all already been removed from the surgery four years ago. So, they are all considered distant. I thought only the one in the chest area was considered distant and was hoping that one was maybe just inflammation or some different or new primary cancer or something.
That’s not good from a prognosis standpoint but it is also the reason for the biopsy. If the lymph nodes are not cancerous (even though the PET scans indicates it is highly likely that they are and they keep showing up on multiple scans) then they would just remove the kidney and that would be curative. They can’t just take the kidney without knowing for sure because chemo is very tough on the kidneys so it is much better to have two of them to share the load. I think this is kind of like one of those flow charts that says “Miracle happens here” though. Please don’t interpret that as being negative. While I am a positive guy all around, I am by no means a Pollyanna either. Personally, I think we are wasting time right now by not starting the chemo regimen. However, the doctors have agreed that if biopsy is possible it is worth being absolutely sure. To be clear, I will be happy for them to be right and the lymph nodes just be a long standing inflammation of some sort but I’m not betting the farm on it.
My next update will be as soon as I get the results from the lymph node biopsy. They are working to schedule that as soon as possible. I am hoping that is this week.
I read all the chemo stuff that they gave me at UCH plus I’ve researched and read pretty much every relevant article and study. I’ve sent my grown kids the free cancer information and counseling line information so they can call if they need. I also highly recommended it to them.
I’ve purchased my electric razor (so I don’t cut myself shaving anymore which I did now and again on a couple bumpy spots) and my soft toothbrush replacement heads for my electric toothbrush. Also got the Paul Mitchell Three shampoo which is supposed to be great for chemo. Supposed to use it as a body wash in addition to shampoo as chemo will come out the pores.
I have my “chemo bag” ready with my cancer binder (they gave me at UCH) some medical history stuff, and my plugs and doodads for my iPad and iPhone. My iPad has tons of songs, games, books, and I’m going to start downloading movies and shows to it as well. I guess instead of the cancer binder UCH gave me I would have rather had that binder full of women that Romney had but you play the hand you’re dealt. ;)
Thanks to all of you for your kind words, thoughts, positive vibes, and prayers!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.39 Replies-
Finally found you, Mike. You’re in my prayers every day. You provided me so much encouragement and positive vibes during my two journeys, I’m glad to have found=d you and, again, let you know my prayers and positive vibes are with you.
Best,
Joe
Joe PDiagnosed: 01/2012 – TCC CIS
All Clear: 06/2012
Diagnosed (Again): 02/04/2013 – TCC CIS
All Clear (Again): 05/03/2013
Diagnosed Yet Again 10/15/2014 – RCC
Working It
Mass General Hospital, Boston, MA.
It’s about all of us IMHO.
Glad to hear you are smoke and cancer free. I’m 1.5 years a nonsmoker. Was almost 4.5 years cancer free but the reset button got hit so I’m going have to start that one over. Never going to have another cigarette.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Mike, this is about you, not me. But since you asked.
4 years smoke free, and coming up on four years cancer free.
Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan
Hey Jim!
Good to see you again! Thanks! How have YOU been?
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Hi Mike, This news of METS bums me out. If anyone can kick cancer’s ass, it is you.
God bless, Jim
Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan
Thinking and praying that this will be another successful journey by a very special guy named Mike. Take Care, Herb
Age 72 had radical 9/11/10 have conduit everything is fine, grateful to be a cancer survivor. Lost Dad and Brother to Cancer both in their 50’s.
Yes, my appointment is tomorrow. I sent them an email about getting a power port put in. That can be used for blood draws, chemo, CT contrast , etc. That way we can give a saline IV at home if needed.
He wants to discuss another study with me as well. I am guessing they will chase down the pathologists of they don’t get the results in the morning. My appointment is at 2:30.
They already scheduled me for chemo starting Monday. The fellow put an order for my port today also.
Will update everyone tomorrow.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Hey Mike… I know your oncologist appointment is tomorrow (Thursday) and I am assuming they will have your biopsy results ready. I sincerely hope they are ready to get the show on the road as they say and get you on the road to recovery ASAP!
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Mike, Just hoping for an update.
Hope everything is going okay.:dry:
Mark
((((I found you in the other post! Glad it went well!))))
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
Audrey and I were listening to a program on the radio yesterday, and the subject was about positive attitude and cancer. The thing that perked me up was the hospitals that were used as the basis for this. MD Anderson and Dana Farber.
They have done tests showing how attitude can affect the recovery of cancer patients. The effect of the mind on recovery is becoming a major reason why some people get, and stay, sick. By using basic stress relieving, and physical training to get the mind in a proper attitude for recovery. There are even studies that show a positive and less stressful attitude can aid in preventing a sickness.
This gives me great hope that You will beat this Mike. You have one of the best attitudes I have ever seen. Great family support and open communication about your treatment and feelings will help you get well.
As we listened to this, Audrey and I were shocked at the timing of it all. She noticed that your name was on our prayer list at church and then “this”
Thanks for keeping us in the loop Mike. We hate to be pests, but without a daily update, we let our fears get to us.
Thanks
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Be thinking positive thoughts about you Mike!
Age 72 had radical 9/11/10 have conduit everything is fine, grateful to be a cancer survivor. Lost Dad and Brother to Cancer both in their 50’s.
Wishing all the best for you today Mike. Hope it is easy and quick with the best possible results.
Your family sounds just like mine. As a matter of fact we were saying the other day the cancer made usall closer. Had an old Aunt who always told me something good always comes out of something bad.
Take good care.
Blessings…..Jean
Those family times and connections are important no matter what our circumstances. My best to Liz as well. Look forward to hearing from you even if just to hear you’re back home.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Thanks Catherine! I won’t know anything tomorrow but I will report out. I might get to watch the x-ray monitor if the sedation doesn’t put me to sleep.
My appointment with my oncologist is already set for Thursday.
Had a great dinner with my son and daughter-in-law. Told them to ask anything at any time by any means (face to face, phone, text, email) and made sure they have the number for the cancer counseling line.
One thing about this being my third round of this cancer thing. We are very open and hug often and say what’s on our mind. No saving stuff for the last minute or risking things not being said.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Thinking of you, Mike… best wishes for your biopsy tomorrow.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TNSign In to reply.
