Urachal Adenocarcinoma

Hi my partner Aaron has just been diagnosed with urachal adenocarcinoma and i have been reading messages of hope. These have been most encouraging. He is 40 yrs old (just turned) and we have a 4 yr old daughter and 10 mnth old son. We live in NZ (New Zealand) and unfortunetly our dr has to do some research into how best to treat this as he has not come across it before. He is also going to consult with some other physians. The wait is certainly taking its toll on both us and the children.  If anyone can help with information on who/how for us to get the best results it would be greatly appreicaiated. Thank you. Keep smiling Pauline T

Hi Pauline, my husband was diagnosed just over 5 years ago with the same cancer.  There is hope!  There are some awesome doctors here in the States.  M.D. Anderson in Texas in one of the leading hospitals in the country that handles this type of cancer.  There are none in our area so we traveled to Pittsburgh, PA for a radical surgery called IPHC (intraperitanel heated chemotherapy profusion).  If you google IPHC you should be able to find out some info on it.  The doctors here said there is no treatment, which is true, but there are some things they can do to help.  Is the cancer only on the bladder?  That's were my husbands started out.  They removed 20% of his bladder 5 years ago and had clean CT scans for the past 5 years until last November.  He had a tumor in the soft tissue of his abdomin.  When the doctor opened him up to remove the tumor he found that the cancer had spread to his peritoneal lining of his abdomin.  That's when we did the IPHC treatment.  It's very radical but we are hoping it helped him.  He starts chemo on Monday Aug 6.

If you'd like to talk, I'm here.  I know how scary this is.  My husband is only 45.

My prayers go out to your family.

Hi Christine, sorry I'm replying to an old message but I can't find our latest email!  Just wanted to check in on you and see how you are doing.  Still on treatments or off right now?  My husband just had a 6 week CT scan and everything looked "stable".  No new growths that they could see and nothing getting any bigger!  The put him back on the same regime for another 6 weeks than another scan.  Hopefully it stays the same, if so, they said they will hold off anymore chemo and do periodic scans.

Did you kids start school? 

Email back when you feel like, hope everything is going good for you and your family.

Take care

Hello all

Geoff and I are in England.  It seems strange to find myself part of an international community under such circumstances. 

My husband Geoff had an initial diagnosis of bladder cancer in July and had a bladder resection in August to remove the tumour.  When returning for the histology report we were told that the diagnosis had been changed to urachal cancer and that a radical cystectomy (when the bladder would be removed along with the prostate and lymph nodes) was needed.  This took place at the beginning of September.

Geoff is recovering well post-op but the latest feedback says cancer cells were found in some of the lymph nodes, that the cancer will re-occur and they don't believe there is any treatment.

We actually want to fight this and does anyone know anything about where to get treatment in the U.K. or Europe or how easy it is to get treatment in the USA if you are not resident?

The main problem locally in so many places seems to be that this cancer is so rare that medical staff are unsure of how to approach it.  Any ideas / information on treatment or any contacts that the medical staff looking after Geoff could use would be very much appreciated.

We have 3 children and the family want to work through this together. 

Hoping for some positive posts.

Thank you all.

Inez

 

I am in England too. I was diagnosed with a urachal mucinous adenocarcinoma in January 2006 and operated on in March 2006. A high-grade tumour the size of a tennis ball, with lots of surrounding mucous, was removed from my abdomen in Wexham Park Hospital, Slough. Half of my bladder was removed too. Post-op I was referred to an oncologist, who told me that the histology report showed that I had a variety of PMP (pseudomyxoma peritonei) and he referred me to a PMP specialist centre at the North Hampshire Hospital, Basingstoke. There is only one other PMP specialist centre in the UK, the Christie Hospital in Manchester. Both centres have an excellent track record in treating PMP. Both perform the Sugarbaker "Shake 'n' Bake" operation, which has had really successful results in the USA, where it was introduced many years ago. PMP is very rare, and the urachal variety is even rarer. I have never met anyone who has had it, and my GP had never come across it in many years of running his practice.

Although the operation I had in March 2006 was not performed by a PMP specialist it appears he did a great job. I have not needed further surgery and the most recent CT scans I have had at the North Hampshire Hospital show that I am currently in remission. I have not needed chemo either. So far there has been no evidence of further growth, and the slivers of PMP mucous left over from my operation in March 2006 are shrinking and even disappearing. In the long term I may need further surgery (the Sugarbaker operation) if the PMP returns, but right now I am fit and well and about to go skiing in Austria. So there is hope...

On 10/7/2007 Geoffrey Paul wrote:

Hello all

Geoff and I are in England.  It seems strange to find myself part of an international community under such circumstances. 

My husband Geoff had an initial diagnosis of bladder cancer in July and had a bladder resection in August to remove the tumour.  When returning for the histology report we were told that the diagnosis had been changed to urachal cancer and that a radical cystectomy (when the bladder would be removed along with the prostate and lymph nodes) was needed.  This took place at the beginning of September.

Geoff is recovering well post-op but the latest feedback says cancer cells were found in some of the lymph nodes, that the cancer will re-occur and they don't believe there is any treatment.

We actually want to fight this and does anyone know anything about where to get treatment in the U.K. or Europe or how easy it is to get treatment in the USA if you are not resident?

The main problem locally in so many places seems to be that this cancer is so rare that medical staff are unsure of how to approach it.  Any ideas / information on treatment or any contacts that the medical staff looking after Geoff could use would be very much appreciated.

We have 3 children and the family want to work through this together. 

Hoping for some positive posts.

Thank you all.

Inez

 

 

Update on Geoff.

A PET/CT scan has identified a further tumour in the peritoneum.  Chemotherapy using FOLFOX has been suggested.

Does anyone out there have any experience of the use of FOLFOX in the treatment of urachal adenocarcinoma and whether it proved effective.

Thank you

Inez 

I am looking for specialists in IPHC. Would you provide the name of the doctor in Pittsburgh or any others you may know of. Thanks, K. Hahn

On 8/2/2007 Basketballmom wrote:

Hi Pauline, my husband was diagnosed just over 5 years ago with the same cancer.  There is hope!  There are some awesome doctors here in the States.  M.D. Anderson in Texas in one of the leading hospitals in the country that handles this type of cancer.  There are none in our area so we traveled to Pittsburgh, PA for a radical surgery called IPHC (intraperitanel heated chemotherapy profusion).  If you google IPHC you should be able to find out some info on it.  The doctors here said there is no treatment, which is true, but there are some things they can do to help.  Is the cancer only on the bladder?  That's were my husbands started out.  They removed 20% of his bladder 5 years ago and had clean CT scans for the past 5 years until last November.  He had a tumor in the soft tissue of his abdomin.  When the doctor opened him up to remove the tumor he found that the cancer had spread to his peritoneal lining of his abdomin.  That's when we did the IPHC treatment.  It's very radical but we are hoping it helped him.  He starts chemo on Monday Aug 6.

If you'd like to talk, I'm here.  I know how scary this is.  My husband is only 45.

My prayers go out to your family.

 Hi, the doctor in PA is Dr. Ahrendt and his nurse's name is Louise, her number is 412-358-3254.  She will be able to help you.  Let me know if you need anymore info. 

 

Good luck and God Bless 

On 5/27/2008 SamuelK wrote:

I am looking for specialists in IPHC. Would you provide the name of the doctor in Pittsburgh or any others you may know of.

Thanks,

K. Hahn

 

On 8/2/2007 Basketballmom wrote:

Hi Pauline, my husband was diagnosed just over 5 years ago with the same cancer.  There is hope!  There are some awesome doctors here in the States.  M.D. Anderson in Texas in one of the leading hospitals in the country that handles this type of cancer.  There are none in our area so we traveled to Pittsburgh, PA for a radical surgery called IPHC (intraperitanel heated chemotherapy profusion).  If you google IPHC you should be able to find out some info on it.  The doctors here said there is no treatment, which is true, but there are some things they can do to help.  Is the cancer only on the bladder?  That's were my husbands started out.  They removed 20% of his bladder 5 years ago and had clean CT scans for the past 5 years until last November.  He had a tumor in the soft tissue of his abdomin.  When the doctor opened him up to remove the tumor he found that the cancer had spread to his peritoneal lining of his abdomin.  That's when we did the IPHC treatment.  It's very radical but we are hoping it helped him.  He starts chemo on Monday Aug 6.

If you'd like to talk, I'm here.  I know how scary this is.  My husband is only 45.

My prayers go out to your family.