Urachal Cancer Survivor

On Mar 27, 2012 3:32 PM MarkVMueller wrote:

On Mar 23, 2012 2:46 AM MC2012 wrote:

On Feb 28, 2012 7:18 PM MarkVMueller wrote:

Dear fellow travellers a quick update from my ipad, currently recovering from surgery in the hospital: Well, I got the meta. removed with some lymph nodes from between my lungs about 3 weeks ago, they removed the top right lung flap as well as another meta. showed. (I had a meta. in a middle flap of the lung radiated a littler earlier stereotactically with the new truebean, and that cross my fingers seemed to have worked). I recovered well as was home after 5 days. At home the pain in my left upper tigh increased, went to hospital and x- ray showed a fracture where I had my bone meta - prob also due to twice radiation in that area. My for today planned operation was pushed forward and I had my upper leg bone (femur) completely replaced from above the knee with an implant. Since yesterday I can move around with crouches somewhat, and exit/enter bed on my own. Hope to be back home in ca. 2 days. Cannot put any weight on my left leg for the next 6-8 weeks aka crouches. As soon as I am a little more mobile I will have a contrast scan upper and lower torso, I guess by end of March. All known metas as of CTs of January have been taken care now.... Mark

Your story and determination is inspiring. My sung has been diagnosed this week. It brings much fear knowing this type is so rare and not many may know how to treat. It's a blessing that y'all share your stories. She hasn't been given options on treatment yet which is worrisome. I understand test have to be done, but wouldn't a PET scan answer more questions on where it's reached in a quicker manner. I dont know much about this and I would be so grateful if you could point us in the right direction!

Sorry to hear about your ant MC2012, I wish her and yourself a lot of strength.

This place is a good one to get information.

Your auntie will first get a scan, the "normal" CT with contrast liquid and PET are good for different things and sometime if it is in the bones or brain a MRI is the choose option.

These are the things you will have to have an oncologist you trust discuss with your auntie and I can only suggest second opioned by a different institute/doctor.

Cheers, Mark

On Mar 27, 2012 4:37 PM chukman wrote:

On Mar 27, 2012 3:32 AM MC2012 wrote:

On Feb 12, 2011 1:05 AM mos1502 wrote:

On Jan 31, 2011 1:12 chukman wrote:

and it is T2 went through the wall of bladder but no tissue involvement or other organs yet

Hi,

I'm delighted to finally find a site where I can meet other people who have urachal carcinoma. I am a 37 year old mum of one from Ireland and I was initally diagnosed with Urchal Carcinoma in May 2009 at which point I had surgery to remove the tumor from my bladder with a partial cystectomy in June 2009 and then my umbilicus was also removed in September 2009, which was all clear and there was no lymph nodes involved. I was then left waiting for my urologist and other doctors to decide on whether I was to have adjuvent chemo or radiation therapy. They contacted the MD Anderson Clinic and were basically told that they wouldn't give adjuvent treatments unless I was part of a clinical trial. Although one of the consultants involved in a meeting that was orgainised said that I was at a very high risk of it returning and that he would be happy to give me radiation therapy but my urologist failed to heed his advice. I continuted to have cystocopys every three months along with ultrasound and ct scans . Then in November 2010 even though I was not suffering from any symptoms what so ever my world came crashing down when I was informed that I now had nodules on my lungs (which were first spoted on an earlier ct scan in May 2010 but never reported) and that I was now at stage 4 metastic urchal carcinoma and that it wasn't curable and if I was lucky I would get three to five years left. I started chemo in December 2010 and I am currently on my fourth session which is a mixture of the Irinotecan and xeloda (capecitabine). I've been lucky so far with the side effects in that I'm only suffering from tiredness with no sickness and my hair started falling out just before Christmas which has now been shaved very short, but other than that I am well. I go for a ct scan in March to see if the chemo has any kind of effect and that the nodules have hopefully slowed down or shrunk. I find that it is very scary knowing how rare it is that its hard to find out any information on it let alone a forum like this which is great.

I hope that all of you that have posted are doing well in your treatments and any advice would be greatly appreciated. Take Care x

Hope that your doing well. If at possible I would like to get feedback from you.

Hey Im doing really well.  No reoccurance since my bladder was taken out Feb 28/11.  I didn't need chemo, didn't need radiation and am a pretty rare bird.  By opting to have a radical cysectomy I think it saved my life.  I didn't feel right getting a partial and something inside me kept telling me don't do it and jump in and get the bladder out.  I have had a few issues of infections with my conduit but that is something I can deal with.  There is hope out there...stay positive and keep fighting!!! 

On Mar 27, 2012 3:32 PM MarkVMueller wrote:

On Mar 23, 2012 2:46 AM MC2012 wrote:

On Feb 28, 2012 7:18 PM MarkVMueller wrote:

Dear fellow travellers a quick update from my ipad, currently recovering from surgery in the hospital: Well, I got the meta. removed with some lymph nodes from between my lungs about 3 weeks ago, they removed the top right lung flap as well as another meta. showed. (I had a meta. in a middle flap of the lung radiated a littler earlier stereotactically with the new truebean, and that cross my fingers seemed to have worked). I recovered well as was home after 5 days. At home the pain in my left upper tigh increased, went to hospital and x- ray showed a fracture where I had my bone meta - prob also due to twice radiation in that area. My for today planned operation was pushed forward and I had my upper leg bone (femur) completely replaced from above the knee with an implant. Since yesterday I can move around with crouches somewhat, and exit/enter bed on my own. Hope to be back home in ca. 2 days. Cannot put any weight on my left leg for the next 6-8 weeks aka crouches. As soon as I am a little more mobile I will have a contrast scan upper and lower torso, I guess by end of March. All known metas as of CTs of January have been taken care now.... Mark

Your story and determination is inspiring. My sung has been diagnosed this week. It brings much fear knowing this type is so rare and not many may know how to treat. It's a blessing that y'all share your stories. She hasn't been given options on treatment yet which is worrisome. I understand test have to be done, but wouldn't a PET scan answer more questions on where it's reached in a quicker manner. I dont know much about this and I would be so grateful if you could point us in the right direction!

Sorry to hear about your ant MC2012, I wish her and yourself a lot of strength.

This place is a good one to get information.

Your auntie will first get a scan, the "normal" CT with contrast liquid and PET are good for different things and sometime if it is in the bones or brain a MRI is the choose option.

These are the things you will have to have an oncologist you trust discuss with your auntie and I can only suggest second opioned by a different institute/doctor.

Cheers, Mark

On Apr 05, 2012 3:55 PM PhilA wrote:

YES You must see an oncologist who will quarterback treatment. This cancer is tricky and not widely known. It took me weeks to find the right oncologist and organize the right treatment.

On Apr 08, 2012 2:53 AM MC2012 wrote:

On Apr 05, 2012 3:55 PM PhilA wrote:

YES You must see an oncologist who will quarterback treatment. This cancer is tricky and not widely known. It took me weeks to find the right oncologist and organize the right treatment.

That's exactly why I was thinking it would be good idea to get oncologist input. I'm not trying to cross any boundaries with her docs but I also want to make sure she gets the best treatment out there available.

On Apr 11, 2012 2:59 AM MC2012 wrote:

Update on my aunt. She's not out of the hospital but she's one step closer. Her recovery maybe slow, but God is with her every step of the way.

I'm so happy and you are exactly right that God is with her every step if the way. Always keep your faith and hope because without that it can be very hard. I too have been going through this for two years but everyone is saying how great I'm doing and I know it is because of my faith in God and my wonderful doctor at Emory.  Keep us updated on the next steps.