Urethral Cancer - 1254861

Wow. . .OK, Dr. West. This makes it even more scary.

Just wondering if, generally speaking, adenocarcinoma-clear cell behaves differently than the adenocarcimona we see with lung cancer? And, are the same types of platinum-based chemo agents used in a doublet fashion for adeno-clear cell (or does it just depend)?

I apologize in advance if my questions are outside of GRACE's knowledge pool.

Thank you,
Laya

P.S. This particular person is scheduled for a cystourethrectomy (which I understand to be surgery to remove the bladder and the urethra) on April 3. Her treating doctor has not mentioned chemotherapy to her at all (either in the pre-operative or the post-operative setting) - - other than to say that generally, chemotherapy is not really all that effective with her type of cancer.

Thank you, Dr. West.

Laya

Thank you very much Dr. Calvo (and Dr. West). . .I really really appreciated it. And, Dr. Calvo - - thank you for joining our GRACE family!

I just watched Dr. Pal's short video-clip on the treatment of bladder cancer that has invaded surrounding muscle. And, I do understand that bladder cancer and utheral cancer are two different animals. In the context of bladder cancer, Dr. Pal stated that the gold-standard treatment is to surgically remove the bladder, but to start with a few rounds of neo-adjuvent chemo (with Cisplatin-Gemzar being one option). Dr. Calvo, from your post above, I take it that unlike what Dr. Pal has described in the context of bladder cancer, neo-adjuvent chemo plays no role in the treatment of someone diagnosed with locally advanced clear-cell adeno of the urethra, correct?

Thank you for your anticipated response. . .

Laya

Again, thank you Dr. West. I really appreciate your response.

Laya

One more question for Dr. Calvo. . .when you said , "...5) In some of the case-series, in patients treated surgically there are long term survivors (around 50%)...," were you going by the 5-year time frame /5-year survival rates we commonly see referenced in the context of lung cancer, or did you mean something else by it (like, for example, NED or "cure" rates that go well beyond 5 years)?

Thank you for your anticipated response,
Laya

Hi there. . .I don't know if my last question got missed here :O) . . .so I'm giving it a bump. . .

Laya

Yes you did, Dr. Calvo. Thank you very very much. Our friend is undergoing surgery tomorrow - - so, fingers crossed, they will get it all and it has not spread.

Laya

Thank you. . .and to update. . .

Our dear friend's surgery went forward without a hitch last Wed., although it was 9.5 hours long. They ended up removing all of her urethra, bladder and a part of her pelvic bone. From the look of things, the cancer had not spread to her bladder, but had grown very very close to it. Her tumor was approx. 4 cm (about the size of a tangerine according to her doc). They created a small sac out of a portion of her intestines, and she now must urinate via a stoma through her belly button. She is in the hospital still and is feeling OK (no real pain yet) other than nausea that meds really are not controlling. She is being encouraged to eat clear liquid foods, etc., but really can't keep anything down (at least not as of last night). I assume that the nausea has something to do with her having undergone such major surgery and that it will get better in a few days. . .We are waiting on the pathology report, which should be out by Tues. or Wed. The surgeon told the family that he believes he got really good margins. We'll see. . .

Laya

She was discharged home today. . .She is feeling much better. I'm so happy she's home!!!!! We still are waiting on the path report.

Laya

Hi Docs:

My dear friend is now a few weeks post-surgery and is going in for her first Post-Op appointment on Thursday. At that time, she will be discussing the path report with her doc. (the info on the path report has not yet been shared with either her or her family). She, however, has decided that regardless of what the path report says, she wants to have some chemotherapy. In discussing this with her daughter-in-law today, I recalled reading here that at least in the context of lung cancer, docs are not prone to give chemo therapy just for the sake of doing something post-operatively. I sent her daughter-in-law the following quote by Dr. West (of course qualifying that it is in the context of lung cancer) which reads, "There is some evidence that adjuvant (post-operative) chemotherapy can be associated with worse survival long after surgery and the chemo (beyond 5 years), perhaps because of harmful long-term effects of the chemotherapy, and perhaps because sometimes the chemo doesn’t completely cure the cancer but perhaps just delays the recurrence of it for a year or several years. This isn’t really well studied, but I describe this issue in more detail here:http://cancergrace.org/lung/2008/07/11/ialt-long-term-risk-adj-ct/ Good luck. Please remember that there isn’t always a value in doing things just for the sake of doing them, whether it’s chemotherapy, supplements, etc."

I also recall reading elsewhere that chemotherapy generally is not found to be effective for clear cell adenos of the urethra. Dr. Calvo and Dr. West, have you come across any articles that reference effective chemos for clear cell adeno of the urethra?

Thank you in advance for your thoughts on this. . .

Laya

Thank you Dr. West. . .I really appreciate your response. I think my friend is just really really scared right now. I recall feeling as she does shortly after my Mom's pneumonectomy when we were going for "cure" - - i.e., wanting as much arsenal in play to make sure that the beast was gone for good (even though my Mom was NED at the time). And, looking back I realize that Dr. Reckamp and our hero doctors/faculty members/moderators here at GRACE were amazing and extremely gifted at calming us (me) down in this regard. Hopefully my friend's doctor will do the same tomorrow.

And Janine - - thank you for your assistance and your well wishes. . .

I'll keep you all posted.

Laya

Spoke to my dear friend today, along with some of her family members. Her appointment with her doc went very well. . .and the focus now is for her to concentrate on healing and getting used to her new normal. Her doc told her that as of right now, there is no reason to believe that she is not cancer-free and surgically cured...YAY! However, because her cancer is so extremely rare, etc., her doc wants to take her case to his hospital's tumor board (which meets next Monday). He explained to them that this is not because he believes that there is anything more to be done at the present. But, rather that he wants to initiate the discussion and to round-table it a bit with some of the other docs. I personally think this is a good idea - - and given the rare circumstances of her particular disease, I'm glad that this doc is opting not to operate in a vacuum here.

So, in sum, we all are very happy, although she still is very much struggling with the emotional aspects of what she's been through. I told her that she is very normal to be feeling the way she does, and that it will take time and distance from having been a cancer patient before she starts to also heal emotionally. Her doc wants her scanned every 4 months for now, and we talked about scanxiety and the general fears and dreads that come with the unknown. I am confident that with time she will bounce back.

Laya

Thank you, Dr. West.

Laya

Well. . .I'm happy to report that after having undergone her major surgery back in April, and then 8 rounds of adjuvant FOLFOX chemo (which, apparently, has shown some efficacy in clear cell adeno of the urethra), my friend's 4 month post-op scan is NED NED NED!!!!! We are elated!

Laya

Just wanted to update. . .

My dear friend remains NED after 1 year. . .and her docs now have pushed her monitoring CT scans out to every 6-months!!!! It's safe to say that we all are ELATED, even though she still is grappling with some side-effects from her chemo which are quite bothersome to her (i.e., knarly neuropathy in her feet).

xoxo,
Laya