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2 scans later, one giant lurch into metastatic BC

8 years 10 months ago #38527 by Kathleen_T
Thanks — appreciate the advice. I am seeking second opinions, for sure, but getting specimens and paperwork moving around is almost a real job!

— Kathleen

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8 years 10 months ago #38522 by BillM
Hi Kathleen,

I was told just about all pelvic lymph nodes are removed and studied during cystectomy. It’s surprising that he didn’t recommend surgery. Definitely start getting set up for second opinions! As far as having neo-adjuvant chemo, your body might do better than waiting until after surgery, if that’s where things go.

Bill

5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...

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8 years 10 months ago #38324 by jj803
Hi Kathleen,

I agree with Patricia regarding getting a second opinion from a urologic oncologist. Urologic oncologists are urologists who have a special interest and often training in the diagnosis and treatment of urologic cancers including bladder cancer. They are likely to have a greater interest in urological malignancies than medical oncologists (internal medicine docs with additional training in the diagnosis and treatment of blood disorders and cancers. It probably does make a difference if these are regional (pelvic) lymph nodes or distant ones (chest or elsewhere). I do think that beginning chemo is probably a good idea whether or not surgery may follow for you since it appears that nodes are already involved. Sometimes easily accessible nodes are removed to confirm the suspicion that they are involved with metastatic tumor as metastasis is not the only reason for enlarged nodes. It is logically assumed that mets are the cause in ones with a cancer that routinely is found in these nodes, but is not always the case. Another possible option for confirmation is a fine needle aspiration, if possible. This is performed, if a not easily accessible location by utilizing a ct scan to confirm that a skinny needle is actually within the suspected tumor, extracting some of the node by suction with a syringe, and then doing a cytopathological analysis of what was extracted. Hope things will go well for you.

jj

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8 years 10 months ago #38323 by Kathleen_T
Patricia wrote:

In bladder cancer, pelvic lymph node dissection (PLND) is performed at the time of a radical cystectomy or a partial cystectomy. For these patients, PLND provides staging information and can be therapeutic. Several studies, including by Skinner[1] and Vieweg et al,[2] have confirmed that patients with pelvic lymph node metastases can be cured with PLND during radical cystectomy. However, the curability seemed to hold for organ-confined cancer (pathologic T stage 2) but not for non–organ-confined cancer (pathologic T stage 3).

Trouble is, I do not know where the cancerous lymph nodes are. The doctor spoke to me on the phone (apologizing for doing so) as he was leaving for two weeks, and I wasn’t thinking quickly enough to ask for more detailed information. He did say that waiting the 2 weeks should not affect the outcome. And he offered to have my chemo get started with someone else on his staff if that is what I wanted.

On Monday I will attempt to speak to another oncologist on his team at Yale to get some of my questions answered. And will ask for slides, reports, and CDs so I can pursue another opinion, maybe at Sloan-Kettering.

Maybe send a copy of your CT scan to Hopkins for a second opinion
http://pathology.jhu.edu/department/services/consults/urologic.cfm

Thanks. I will call them on Monday as well.

I know you must be devastated but if it were me i'd be going for that second opinion.

Devastated about describes it all right. Sounds like good advice — thanks.

— Kathleen

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8 years 10 months ago #38310 by Patricia
Gee Katherine.i'd maybe get another path opinion on that and urological one for that matter.
In bladder cancer, pelvic lymph node dissection (PLND) is performed at the time of a radical cystectomy or a partial cystectomy. For these patients, PLND provides staging information and can be therapeutic. Several studies, including by Skinner[1] and Vieweg et al,[2] have confirmed that patients with pelvic lymph node metastases can be cured with PLND during radical cystectomy. However, the curability seemed to hold for organ-confined cancer (pathologic T stage 2) but not for non–organ-confined cancer (pathologic T stage 3).
Maybe send a copy of your CT scan to Hopkins for a second opinion
http://pathology.jhu.edu/department/services/consults/urologic.cfm
So many people are found to have involved lymph nodes at the time of cystectomy and often removal and adjuvant therapy is curative.
And maybe the combo neo-adjuvant chemo you are going to go through will work?
I know you must be devastated but if it were me i'd be going for that second opinion.
pat

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8 years 10 months ago #38309 by CatherineH
Kathleen... I am so sorry you have received such upsetting news. I don't know anything about chemo so I can't comment on that except to say my prayers are with you as you move forward with your treatment. It sounds like he has given it careful consideration in light of your kidney issues.

Will there be further testing on the suspected nodes?

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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