Chemo for Urachal Cancer

What are your experiences with chemotherapy having an urachal cancer?

I am a 45 year old male from Switzerland, here my history so far:

- partial cystectomy in Jan 2009 after discovery of tumour because of blood in urine.

- two lymph nodes enlarged, discovered april 2010.

- removal of 21 lymph nodes in abdomen in mai 2010. Two lymph nodes contained tumours, all other lymph nodes were cancer free.

- radiation of abdomen because there was some penetration of the 2 invaded lymph nodes (50 gray).

- shoulder pain which I have been having for nearly 2 years and thought to be a sport injury turned out to be a metastases after having an MRI.

- radiation of the shoulder (36 gray)

- a bone scintigraphy showed no other metastases, a ct of the abdomen done 2 month ago showed no occurence.

- currently in remission

My doctors propose a chemotherapy, their reasoning:

The distant metastases in my shoulder and the cancer free lymph nodes torwards my upper abdomen suggest that the cancer cells are in my blood. Since I am now in remission and good health it would be a good time to go for chemo. They say that the chances of the chemo having an effect with me not currently having a metastases (probably only micro-metastases in the blood) is higher than trying when I would be in a state of metastases.

This makes sense to me and I decided to go thru with this.

I will start the following chemo in two weeks:

6 times 3-week cycles of cisplatin/gemzar

zometa, 1 infusion per month (probably for the rest of my life)

Please let me and the others know your experiences.

Well, so far so good. I have had my first cycle of cisplatin/gemzar two weeks ago, and gemzar with some zometa thrown in last week. The only side effect so far has  been mainly tiredness, no nausea at all or any of the other ones from the long list of possible chemo pains. I am on a break this week and will start the 2nd cycle next week.

Also had a CT two weeks ago - no metasases visible! Certainly makes going thru the next 5 cycles a little easier...

If anybody is interested in the varioius dosages, medicaments and treatment details/timeline I will be happy to post them.

A lovely christmas to everybody out there and their families going thru these difficult times.

Dear Mark,

  My husband Mark has IMT before the Christmas. He started by urine difficulty to urine in blood by the short 10 days.  He just had the partial cystectomy on last Wed and still in hospital for the moment. Also his lymph nodes are removed at the same time, luckliely has no tumours or cancer contain. Dr said that he will be recovered within 6 months ( a brand new man!). He just need to get use to the half size of his bladder.  There is no need for chemo. He is very very lucky, no we are very very lucky since we have 3 children and I don't think I can handle it on my own.

Best wishes to you and keep positive.  Remember, mental is stronger than your physical. You can win!

Hi Libby

Thanks for your post and wishes. I sincerely hope your husband will be fine - I got 20% less bladder - just means I need to go to the loo (in the night -1 to twice) a little more.

I do not want to overly worry you, but your husband and you may want to take into consideration if not already proposed anyhow by your doctors.

Just make sure that your husband ge's good control after the operations, it has been my experience that the oncologists should go for at least in the first 1-2 years CT-Scans every 3 month, maybe 6 month after the first year. Maybe you want to consider a fully body bone scintigraphy, just to make sure there are not metastases.

All the best!

Mark

Well, here I am having passed the 2nd cycle some 3 weeks ago and just receivev my 3rd round of cisplatinol these last two days. Still feel fine and I yet to look like Yul Brinner (hair still on). Hardly side effects, some tinggling in the feet and fingers, but goes away quickly again. During 2nd round I did feel some deep tiredness about 2 days after the chemo which lasted for roughly 3 days - afterwards I was back to work again and felt my strength returning very quickly. I may add that I find it very very important that one tries to continue life as usual - including work if possible.

Unfortunately I new situation has arrived. I was diagnosed thru an MRI last september to have a metastases in the shoulder (glenoids, processus coracoideus). They assumed that from my history with the urachus. A punction to retrieve a tissue sample to diagnoses was tried with local anasthetics under a CT-scanner with needles, but had to be stopped because of to much pain and the tissue samples removed where not conclusive. They said that the insides of my bones seemed very soft with fluids and blood. Not to loss to much time I underwent a radiation treatment of the scapula with the full dosis for that area of 37gray. Currently in a chemo with cisplatin/gemzar to fight possible micro-metastases in the blood (otherwise december ct showed not metastases).

Now, just yesterday during chemo we did another MRI to see what has happened to my shoulder as I was feeling some slight revival of pain in my shoulder (after radiation the pain nearly vanished). Upon first quick assesement of the new and old MRI-scans, I will get more details mid next week, the tumour in my shoulder is still the same size!

Well, the doctors are a little baffled to say the least. I assume they will now propose, and if not I will insist, to get a 100% diagnosis/biospy of the shoulder - even if I need to undergo small surgery if punctation does not promise 100% sure tissue samples.

So, I am now floating again as numeous times these last two years and don't know where this is heading towards.

All I can say is that I will fight - so far all the treatments have not had lasting severe side effects and were bearable.

I will keep you posted.

Mark

Hi Mark,

I wish you all the best with your treatment.  Keep up the fight!  My hubby has a similar story:  50 yrs old, blood in urine, was diagnosed with urachal cancer in Nov '11.  He had partial cystectomy/umbilectomy. He was thankfully node-negative but his tumor was stage IIIA (had invaded soft tissue).  One of the margins was too close for comfort (within 1 mm) so he will get local radiation when his bladder is ready to handle it.  He has half his bladder left.

Our issue is whether to do chemo after the rad.  The Dr's here at Huntsman Cancer Institute in Utah admit there is very little evidence of chemo working on this rare cancer.  We are heading to MD Anderson in a couple days to consult with an "expert" on urachal cancer.  I will update after we get info from them. 

It's nice to find someone with a recent story of this cancer.  I hope you will continue to update.  Best of luck to you! 

Dr. Arlene Siefker-Radtke.  You can find her through their website.  She was very good and has treated more urachal patients than anyone else. 

She has had great success treating metastatic urachal with a colorectal chemo regimen, which we are going to use on my husband to prevent recurrence from a narrow margin and from not having his whole umbilicus taken during surgery.

Thank You.

I believe that she works with MD Anderson in Texas. I have seen a bunch of her publications and will advise my brother's doctor. When did you husband have his initial surgery and how is he doing?

Yes, she is with MDA and was well worth the two trips we took!

My hubby's surgery was Dec 1st.  It was done here in SLC, Utah.  He is doing great, no evidence of recurrence or mets, but one margin was too close  and not having his belly button taken makes him extremely high risk for recurrence so we are going ahead with chemo in the next week or two.

I hope your brother fares well.