Urachal Cancer Survivor

On Jun 13, 2012 1:04 AM KMKontario wrote:

I was diagnosed with Urachal Adenocarcinoma in April 2011.

In May 2011 I had a partial cystectomy.  Margins were clear, but I was refered to an oncologist as a precaution.  Durning routine testing, they found that I had mets in my lungs.  I did 6 rounds of chemo, cysplatin and 5FU.  My oncologist considered my cancer stable and I took a break from the chemo.

In May 2012 during a routine CT they found something on one of my ovaries.  My oncologist send me for an ultrasound where it was confirmed that there is an 8 cm tumor on my right ovary.

My oncologist wanted to start me back on chemo immediately.  I told him that I want the tumor removed.  He told me that they do not normally remove mets.  My concern is that it grew to this size in a matter of 3 months and we all know that chemo is not always effective on our kind of cancer.  I do not understand why they can't take it out when it is on a part of my body that I really do not need.

I am getting a second opinion.  I have an appointment to see a gyno-oncologist as well as a radiation oncologist.

I would welcome any advice from others who are dealing or have delt with this type of cancer.

Hi KMKontario,

Your story is so similar to my own I was first diagnosed in 2009 and had a partial cystectomy also with clear margins, my belly button was then removed 3 months later as a precaution but it was all clear. I wad having check Ups every 3 months then in the November of 2010 I was diagnosed with Mets to both my lungs so I commenced my chemo journey. It was also noted that I had growths on each ovary, they left them alone and kept an eye on them over time it was noted that the one on the left was starting to wrap itself around the tube from my kidney to my bladder so they decided to operate. So after 19 cycles of chemo I asked for a bit of a break as the mets on my lungs have been stable for a while, which my oncologist was happy enough with.

 As I am writing this I am at home recovering from my operation 11 days ago where they removed my ovaries and most of my uterus. I am doing really well and the gyno-ocologist is very happy with the outcome and we are just waiting for the results in the next couple of weeks, before I start back on my chemo. I hope this helps and best of luck with everything. Take care

@ vtoole

Your story is quite remarkable , and is interesting to me

I have just completed 28 days of IG-IMRT and will not get the results for another month or so ,

But the Dr seems to be optimistic as my tumor is at present around 4 cms.

But I am looking for a chemo option to present to my docs ( who coincidently has worked with Dr Radtke in the past  )

So it seems there are many experiments that warrant further investigation,

We are all fortunate to be on the frontier so to speak ,

Pallative care is for some...... better than no care

On Jun 28, 2012 2:29 AM Abovegrass wrote:

@ vtoole

Your story is quite remarkable , and is interesting to me

I have just completed 28 days of IG-IMRT and will not get the results for another month or so ,

But the Dr seems to be optimistic as my tumor is at present around 4 cms.

But I am looking for a chemo option to present to my docs ( who coincidently has worked with Dr Radtke in the past  )

So it seems there are many experiments that warrant further investigation,

We are all fortunate to be on the frontier so to speak ,

Pallative care is for some...... better than no care

Hello,

The chemo protocol is the one Dr. Ratke discovered, so to speak. I mentioned the 4 meds in the previous post. Perhaps, you could present those to your doc.

Do you mind telling me what IG-IMRT is? My husband will be taken off of the "experimental drug" this September after 2 years of every 3 week infusions for a "chemo holiday." My concern is what happens if the cancer comes back? Do we go back to square 1? Do we try another option?

I wish you prayers and luck on the results.

On Jun 27, 2012 3:40 AM MC2012 wrote:

Tomorrow my aunt goes to get her Pet Scan results after 6 treatments of chemo. From my understanding this is when she will find out if the combination of chemo will show positive results. If y'all could just say an extra prayer tonight for my aunt,our family will be grateful.Thanks "" target="_blank" rel="nofollow">http://grateful.Thanks " target="_blank" rel="nofollow">grateful.Thanks again....

Hoping your aunt's results were good news.

On Jun 28, 2012 2:29 AM Abovegrass wrote:

@ vtoole

Your story is quite remarkable , and is interesting to me

I have just completed 28 days of IG-IMRT and will not get the results for another month or so ,

But the Dr seems to be optimistic as my tumor is at present around 4 cms.

But I am looking for a chemo option to present to my docs ( who coincidently has worked with Dr Radtke in the past  )

So it seems there are many experiments that warrant further investigation,

We are all fortunate to be on the frontier so to speak ,

Pallative care is for some...... better than no care

Where are you being treated?

@ MC2012

I hope things go well for your Aunt , it is a serious disease and the road is sometimes tough , I wish her well,

@ vtoole

IG-IMRT is targeted radiation aka Truebeam , Cyberknife etc.. and in my case can be aimed at specific mets and has show good results on some patients, under the right conditions !.

I have been treated in Wash DC. ( HIPEC surgery) and am monitored ( scans etc....at Mass General Hosp , and UMass Medical Ctr, ( IG-IMRT Radiation ),

My Dr's tell me I am lucky so far, the disease seems to be in retreat and has so far been contained to the abdomen & pelvic region ,

I am living and working as normal as my peers !!! ( "What a drag it is gettin old " ) Mick Jagger once pined !!!

Her PET scan results came back the same. Were keeping our faith that the Lord will continue to give her the strength she needs to overcome this battle. Even though the results were not what we expected,were thankful that it has not spread. To every negative we must find the positive in it. Her oncologist will begin a new treatment of chemo that she will take orally. It's been a rough journey on her,as you all can relate to.

On Jun 27, 2012 8:24 AM mos1502 wrote:

On Jun 13, 2012 1:04 AM KMKontario wrote:

I was diagnosed with Urachal Adenocarcinoma in April 2011.

In May 2011 I had a partial cystectomy.  Margins were clear, but I was refered to an oncologist as a precaution.  Durning routine testing, they found that I had mets in my lungs.  I did 6 rounds of chemo, cysplatin and 5FU.  My oncologist considered my cancer stable and I took a break from the chemo.

In May 2012 during a routine CT they found something on one of my ovaries.  My oncologist send me for an ultrasound where it was confirmed that there is an 8 cm tumor on my right ovary.

My oncologist wanted to start me back on chemo immediately.  I told him that I want the tumor removed.  He told me that they do not normally remove mets.  My concern is that it grew to this size in a matter of 3 months and we all know that chemo is not always effective on our kind of cancer.  I do not understand why they can't take it out when it is on a part of my body that I really do not need.

I am getting a second opinion.  I have an appointment to see a gyno-oncologist as well as a radiation oncologist.

I would welcome any advice from others who are dealing or have delt with this type of cancer.

Hi KMKontario,

Your story is so similar to my own I was first diagnosed in 2009 and had a partial cystectomy also with clear margins, my belly button was then removed 3 months later as a precaution but it was all clear. I wad having check Ups every 3 months then in the November of 2010 I was diagnosed with Mets to both my lungs so I commenced my chemo journey. It was also noted that I had growths on each ovary, they left them alone and kept an eye on them over time it was noted that the one on the left was starting to wrap itself around the tube from my kidney to my bladder so they decided to operate. So after 19 cycles of chemo I asked for a bit of a break as the mets on my lungs have been stable for a while, which my oncologist was happy enough with.

 As I am writing this I am at home recovering from my operation 11 days ago where they removed my ovaries and most of my uterus. I am doing really well and the gyno-ocologist is very happy with the outcome and we are just waiting for the results in the next couple of weeks, before I start back on my chemo. I hope this helps and best of luck with everything. Take care

mos1502:

It is almost scary how our symptoms are mirroring each others.  I am just home from emergencey surgery last week to have both ovaries and tubes removed.  The tumor grew at an obscene rate and last Saturday I was admitted to hospital with very bad pain in my left lower abdonen.  A CT revealed that the tumor had grown from 3cm to 25cm in 3 weeks.  I was transferred to a larger hospital where a gyno-oncologist removed the mass.  She feels it was a compltete success.  There was no attachement other then my ovary, although my bowels were very involved and that is why I was in such pain.

After some recovery time I guess it is back to chemo for me as well.  I am not looking forward to it, but we have to fight the fight.

I wish you well.

Hoping that all are having brighter days. God bless....

Hoping that all are having brighter days. God bless....