Urethral Cancer - 1254861

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laya d.
Urethral Cancer - 1254861

I believe the answer to this question is "no," but do any of our current faculty members have expertise in and/or experience with urethral cancer (which I understand to be very rare)? Specifically, with a histology of adenocarcinoma-clear cell. A very dear friend has recently been diagnosed with this, and I'd like to point her to GRACE if appropriate.

Thank you,
Laya

catdander
Reply To: Urethral Cancer

Laya, I'm so sorry about your friend. Dr. West will have the best perspective on this, there is no mention of urethral cancer oncs in my lists. Also I'll ask Dr. Calvo if he has any input. He has a broader field of patients I believe.
xoxo,
Janine

marisa93
Reply To: Urethral Cancer

Laya,

So sorry to hear about your dear friend. I wish all of you the best....love and (((hugs)))

Lisa

Dr West
Reply To: Urethral Cancer

I don't think there's anyone on the planet with an expertise in urethral cancer: it's too rare. I see a good bit of the genito-urinary cancer at my center, but I've never seen a case of urethral cancer over the 15 years I've been specialized in oncology.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: Urethral Cancer

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.

Dr West
Reply To: Urethral Cancer

I would say that there's enough variability in the different adenocarcinomas of the body that I wouldn't presume that the treatment for adenocarcinoma of the lung would be the best choice...but I don't know enough about it to say more than that. Sorry...

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: Urethral Cancer

Thank you, Dr. West.

Laya

drcalvo
Reply To: Urethral Cancer

Hello Laya, I am a medical oncologist in Ohio, (not a urethral carcinoma expert) I agree with all the above. Clear-cell adenocarcinoma of the urethra is extremely rare and as a result there are no established treatment guidelines. There are several reports in the literature (some of them with up to 15 patients) and this is what I can tell you after reviewing them:
1) Clear-cell adenocarcinoma usually arises from the proximal urethra, in most cases from a diverticulum (or a pouch) in the urethra.
2) It is seen exclusively in women
3) The best treatment seems to be a cysto-urethrectomy
4) There is no consensus in the use of chemotherapy or radiation. Cases considered to be at high risk based on postoperative findings (tumors larger than 4 cm, positive or close margins, etc) may benefit from radiation, no major benefit seen from chemo in these patients.
5) In some of the case-series, in patients treated surgically there are long term survivors (around 50%)
Best wishes for a prompt recovery of your friend.

Dr. Calvo

________________________________________________________________________

Alejandro Calvo, MD
Diplomate in Oncology, Hematology and Palliative Care
Kettering Cancer and Blood Specialists

Views expressed here represent my opinion, not those of GRACE, Swedish Cancer Institute or Kettering Cancer and Blood Specialists. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

Dr West
Reply To: Urethral Cancer

Dr. Calvo,

Thanks very much for your helpful insight here! (If I ever see a patient with a urethral adenocarcinoma, I'll send them to you -- you're now an expert in my book, even if you've never managed a case).

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: Urethral Cancer

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

Dr West
Reply To: Urethral Cancer

There would be no role for pre-operative chemotherapy. As Dr. Calvo noted, there isn't significant efficacy of chemo against this type of cancer. When surgery is the best treatment we can offer, we definitely don't want to postpone it to pursue a treatment that is noted to be far less effective.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: Urethral Cancer

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

Laya

laya d.
Reply To: Urethral Cancer

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

laya d.
Reply To: Urethral Cancer

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

Laya

catdander
Reply To: Urethral Cancer

I'm very sorry Laya. I'll ask hom to clarify.
Janine

drcalvo
Reply To: Urethral Cancer

Hello Laya, the case series I reviewed had about 14 cases that were treated with cysto-urethrectomy. 50% of them were alive and cancer-free at 5 years of follow up. That means cure for most cancers.
In reference to the question you had about muscle-invasive bladder cancer treated initially with Gemzar-Cisplatin, I can tell you that it does not apply to your friend's case, bladder cancer is composed of transitional cell carcinoma, a different type of carcinoma than clear-cell adeno of the urethra. Most of the reports show that chemo given before surgery does not have any positive impact on this type of cancer.
Hope I was able to answer your questions.

Dr. Calvo
________________________________________________________________________
Alejandro Calvo, MD
Diplomate in Oncology, Hematology and Palliative Care
Kettering Cancer and Blood Specialists

Views expressed here represent my opinion, not those of GRACE, Swedish Cancer Institute or Kettering Cancer and Blood Specialists. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

laya d.
Reply To: Urethral Cancer

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

Dr West
Reply To: Urethral Cancer

I just wanted to wish your friend luck with her surgery.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: Urethral Cancer

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

double trouble
Reply To: Urethral Cancer

Laya, I hope your friend is recovering well.
Debra

Dr West
Reply To: Urethral Cancer

I'm sorry it's such a rough go at this point. Yes, it's very common for the bowels to be very slow to get back into gear after being manipulated during surgery. This situation of a temporary paralysis of the gut is known as an an ileus, and a post-operative ileus is very common. I have a patient who just underwent a similar surgery for bladder cancer, including the sac out of his intestines to serve as a bladder, and he's just coming out of this ileus stage.

Good luck to her. Hoping it gets better very soon.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

marisa93
Reply To: Urethral Cancer

Laya,

Just wanted to add my best wishes for your friend's recovery. Please keep us posted.

Lisa

laya d.
Reply To: Urethral Cancer

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

laya d.
Reply To: Urethral Cancer

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

catdander
Reply To: Urethral Cancer

Laya, I so hope your friend does very well. I've contacted Dr. Calvo for input.

Keeping you close,
Janine

Dr West
Reply To: Urethral Cancer

I'm happy to address questions that are within the range of what I do, but I have no experience with treating urethral cancers and can't chase down questions of people outside of my clinical responsibilities.

Of course, the treatment plan that is pursued is between her and her doctor(s), but I think your counsel is very appropriate here. I personally object to a reflexive view that more therapy is invariably better, as there is a very real chance that it will only add short term and/or long term side effects for no benefit. By the same token, I don't think I could work with someone who really isn't interested in thoughtful judgment and just wants someone to give treatment for the sake of treatment.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: Urethral Cancer

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

laya d.
Reply To: Urethral Cancer

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

Dr West
Reply To: Urethral Cancer

Everything you're relaying makes great sense. I think that just about any oncologist would want to discuss a rare case with a good tumor board to just review everything and solicit as many thoughtful opinions as possible. But the tentative plan also sounds very sensible.

Best of luck to her.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: Urethral Cancer

Thank you, Dr. West.

Laya

laya d.
Reply To: Urethral Cancer

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

catdander
Reply To: Urethral Cancer

YAY!!!!!!!!!!! How absolutely thrilling!!!!!!!!!!!

double trouble
Reply To: Urethral Cancer

Oh Laya! Finally you get some good new! I'm so happy!
Debra

Dr West
Reply To: Urethral Cancer

That's wonderful! Thanks for sharing that good news!

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: Urethral Cancer

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

catdander
Reply To: Urethral Cancer

Laya, how wonderful to hear about your friend! I hope she gets rid of the neuropathy. I read about a recent finding where a long term study showed people regaining nerve tissue years even decades out from original trauma. Always hope :)
and cyber hugs,
Janine

JimC
Reply To: Urethral Cancer

Hi Laya,

Aside from those troublesome side effects, that's really great news!!! Best wishes for continued NED and diminishing side effects.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: Urethral Cancer

That's really great! I'm sorry she has neuropathy. I hope that gets better. Though I suspect she feels it was worth accepting if she's cancer-free.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education