Urachal Cancer Survivor

Hi Christine!  It's hard to believe it's been almost a year for us now too. He was originally diagnosed back in 2002 and was what we thought cancer free until last November.  It's crazy to think about all the stuff you two have been through in such a short time.  Heartbreaking, really.  I'm glad your doing ok.  My husband has a few tumors on the outside of his incision line from the big surgery back in February.  It doesn't seem like they are getting smaller but who knows.  The doctor said we should see them shrinking if the chemo is working.  Do you start back up on the 13th?  What do they have you on now?  

My kids are staring school on the 10th and they are excited.  It's weird to have one driving, just wait!  Scary thoughts go through my head everytime she gets in the car!  But it helps me soooo much, since we live about a half hour away from where they go to school. They are really active and always need to be somewhere!

Well, I better get ready to go, Dan's feeling better today and he's going to try to get out of the house!

Take care and I'll talk to you soon!

Shelly  

Hey Christine, just wanted to drop a line to see how you were doing. Email me when you can.

God Bless!

Shelly 

Hi Shelly   I didn't get your message in my e-mail and I haven't been on here for awhile. I did see find your message about your husband being stable and I hope that is still the same. I just finished another round of chemo and I had a cat scan today and I will get the results back nov. 1. I really don't know what is next in any out come of the results, in one way I wish for the cancer to be gone so I don't have to have anymore chemo and another part of me will worry if I am told they will stop the chemo and wait and see what happens. Kind of dump but your mind can play funny tricks on any practicle thoughts. Well I wish you and your husband all the positive thoughts I have and e-mail me soon , love to hear from you too.

christine

On 7/6/2007 Linda l wrote:

It has been 3 years since I posted my first message of being in remission.       I have remained in remission with no reoccurences. My cancer was diagnosed as stage 4. I underwent surgery ,removed half of bladder, colon resection and hysterectomy . I underwent chemo for 6 mon. It was agressive Gemzar and Cistplatin. Except for a back injury and osteoporosis I am doing well. I now Know my surgeons and oncologist are the best around. I thank God for every day. It is still a battle, but worth the fight. Dr. Songbird are you still using this sight?  God bless to all who fight this rare cancer. Never give up.      Linda L.

I am a survivor too. I was diagnosed with urachal cancer in early February 2006 and underwent surgery on 1 March 2006. A tumour the size of a tennis ball, emanating from my urachus and pressing on the top of my bladder, was removed, along with a mass of jelly spreading up to my liver. Half my bladder was also removed, but my belly button was left untouched - the scar just zig-zags round it! My lymph nodes were not affected, and the tumour had not spread, apart from creating the mass of low-grade jelly in my abdomen.

I was subsequently referred to an oncologist, who confirmed that I had a urachal mucinous adenocarcinoma, which falls into the general category of PMP (pseudomyxoma peritonei), so I was referred to a PMP specialist clinic in the UK, where I now have regular CT scans and follow-up interviews with a consultant surgeon.

Since my operation I have made excellent progress. I have had no chemo treatment and no further surgery. I have been told both by my oncologist and by my consultant surgeon that I am currently in remission and that they don't need to see me for another six months.

I am 65 years of age, I feel fit and well, I play golf regularly and walk my dog for a mile each day. I was able to go skiing in January 2007 and I plan to go skiing again in January 2008.

I worry a bit about the future, but my philosophy right now is to enjoy life to the full. I hope this gives hope to fellow-sufferers.

On 10/22/2007 Graham D wrote:

 

On 7/6/2007 Linda l wrote:

It has been 3 years since I posted my first message of being in remission.       I have remained in remission with no reoccurences. My cancer was diagnosed as stage 4. I underwent surgery ,removed half of bladder, colon resection and hysterectomy . I underwent chemo for 6 mon. It was agressive Gemzar and Cistplatin. Except for a back injury and osteoporosis I am doing well. I now Know my surgeons and oncologist are the best around. I thank God for every day. It is still a battle, but worth the fight. Dr. Songbird are you still using this sight?  God bless to all who fight this rare cancer. Never give up.      Linda L.

 

I am a survivor too. I was diagnosed with urachal cancer in early February 2006 and underwent surgery on 1 March 2006. A tumour the size of a tennis ball, emanating from my urachus and pressing on the top of my bladder, was removed, along with a mass of jelly spreading up to my liver. Half my bladder was also removed, but my belly button was left untouched - the scar just zig-zags round it! My lymph nodes were not affected, and the tumour had not spread, apart from creating the mass of low-grade jelly in my abdomen.

I was subsequently referred to an oncologist, who confirmed that I had a urachal mucinous adenocarcinoma, which falls into the general category of PMP (pseudomyxoma peritonei), so I was referred to a PMP specialist clinic in the UK, where I now have regular CT scans and follow-up interviews with a consultant surgeon.

Since my operation I have made excellent progress. I have had no chemo treatment and no further surgery. I have been told both by my oncologist and by my consultant surgeon that I am currently in remission and that they don't need to see me for another six months.

I am 65 years of age, I feel fit and well, I play golf regularly and walk my dog for a mile each day. I was able to go skiing in January 2007 and I plan to go skiing again in January 2008.

I worry a bit about the future, but my philosophy right now is to enjoy life to the full. I hope this gives hope to fellow-sufferers.

Graham I read your post and it worries me to know that you still have your belly button!!! It was the first thing my doctors here in canada told me would have to go!! A small price to pay! Sounds like everything else is being watched carefully and it sounds like you have good chance of beating this thing. I pray that you stay in remission and live your life to the fulliest!

dasiy bear

Hey Christine, how are you feeling?  My husband always seems ok during the chemo but it's the week after that he feels the worst.  How come it takes so long to get your ct results?  We get there after a few days here.  That would drive me insane having to wait.  Dan goes on Friday for his next ct scan then we meet with the doctor on the following Monday to get the results.  I'll keep you posted.  How do we share our personal emails so we don't have to go through here?  I always forget where we were posting.

Take care of yourself and I'll talk to you soon.

Shelly 

On 10/23/2007 Basketballmom wrote:

Hey Christine, how are you feeling?  My husband always seems ok during the chemo but it's the week after that he feels the worst.  How come it takes so long to get your ct results?  We get there after a few days here.  That would drive me insane having to wait.  Dan goes on Friday for his next ct scan then we meet with the doctor on the following Monday to get the results.  I'll keep you posted.  How do we share our personal emails so we don't have to go through here?  I always forget where we were posting.

Take care of yourself and I'll talk to you soon.

Shelly 

Hi Shelly

I will give you my e-mail but I don't know if it will be blocked by the cancer compass people?

. If this doesn't work we could try another site. Have you been on the www. dipex.org I know that there we could exchange addresses. I have to wait for my results because my doctor is away for a week. They also give me appointments that work best for me because we have to drive 2 1/2 hours to the hosptial. Hope you get my address.

Christine

Yes, they normally remove the belly button in the UK too, but I was not treated in a specialist urachal cancer unit - just a normal urology unit - and I guess that they did not positively identify the tumour as urachal until the histology report was received. I was then told it was a urachal mucinous adenocarcinoma and that my chances of surviving more than a few months were slim. But this prognosis has proved wrong. I am still here, 19 months later, physically fit and planning my skiing holiday in January.

I have now been referred to a specialist PMP unit (appendix, bowel and urachal cancers) at another hospital, and the surgeons there normally remove the urachus, the belly buttion, spleen and gall bladder - and often the whole bladder too. But when they examined me 3 months post-op they decided that no further treatment or surgery was needed as I appeared to be fit and well.

So far - fingers crossed - 19 months post op I have no indications of a recurrence of the cancer and the remaining slivers of mucous in my abdoment are shrinking and disappearing. I am currently in remission.