tumor in tail

Hello

I (51 healthy female) was diagnosed with a large tumor in the tail of my pancreas 3 months ago. No symptoms but found while looking for something else. Unfortunately, the scan also revealed two small liver mets. No response to Gemzar/Tarceva. There are two surgeons from Johns Hopkins who want to operate even though it's metestatic.My questions are:

What are the experiences of anyone with this less common, tumor in the tail of the pancreas?

Has anyone undergone surgery with liver mets present and their health afterwards, chemo taken, etc.?

Much thanks in advance for any information - Susan

I would say if you can find someone who will do surgery, do it.  It would be unusual in metastatic disease, but its probably your best shot at a cure.  What do they say about the liver mets?  Surgery, radiation?

they would cut out the two liver mets. Am meeting with the surgeon Thursday although he's already seem my records

 

On 2/13/2007 Metta1 wrote:

Hello

I (51 healthy female) was diagnosed with a large tumor in the tail of my pancreas 3 months ago. No symptoms but found while looking for something else. Unfortunately, the scan also revealed two small liver mets. No response to Gemzar/Tarceva. There are two surgeons from Johns Hopkins who want to operate even though it's metestatic.My questions are:

What are the experiences of anyone with this less common, tumor in the tail of the pancreas?

Has anyone undergone surgery with liver mets present and their health afterwards, chemo taken, etc.?

Much thanks in advance for any information - Susan

Hi

My Dad had a large tumour removed from the tail of his pancreas on 23.11.06 (its called a distal pancreotomy), his spleen was also removed along with part of his stomach and left adrenal gland due to the size of the tumour (9x7x4.5cm). The surgery, which we were told would take between 4 and 6 hours, lasted longer as the tumour was larger than first anticipated and Dad was in hospital for 25 days.

It is a major operation and Dad lost a lot of weight (he is just starting to gain a few pound the last couple of weeks), but he is getting out and about and is gaining his strenth daily. Dad is 72 so your recovery may be quicker.

Good luck and best wishes

Sue 

 

 

You are so lucky to have found a surgeon that wants to remove it. That is very uncommon. It is your only chance for a cure. I spent the last year trying to find a cure for my Mom. Our greatest hope was that her cancer in the liver would recede and that we would find someone to do the surgery. That would have been a miracle. It didn't work out that way for us. Surgeons don't want to do surgery when it is metestatic because they feel the risks outweigh the benifits. But that doesn't change the fact that it is the only chance you have to get a cure. I know that there is such a huge learning curve to this and you feel like there isn't enough time to take it all in. I wish there was an easy answer to the whole problem. If it were me though, after a year of researching heavily all of the treatments available I would have that surgery as soon as possible. I can't state that strongly enough. There simply is no other viable option.

Jessie

 

Jessie

Hi, I don't usually do message boards, but here goes. Since being diagnosed with stage 4 unresectable metastatic pancreatic cancer last August, I and family and friends (several medical professionals in the mix) have done considerable research. 99% of metastasized (unresectable) cases don't make it more than 1 year. Patients with resectable or operable mets, who get adjuvant chemo afterward are almost the only ones who even talk about 5 year survival rates. If you have a doc who wants to operate, go for it. After saying that, I want to offer the number one rule I've learned since my diagnosis: quality of life with this disease is up to you and every choice you make about therapy will impact that quality. Oncologists are smart people but their guiding light is "standard of care" which means that your therapy is sometimes influenced more by the norms of medicine, insurance and legal precedence than by your quality of life. Take nothing for granted. The outlook is grim and even with the wholehearted support of loving people (as I have), there are days of being tired and feeling sick when it's tough to let them in. There are many days when I don't want to eat anything, or drink anything (constipation has been the toughest problem so far) and without the patient prodding of my "support group" my quality of life would be ever so much less. Too much information? Maybe so. I'm a man with a problem I can't "fix." What options do I have? One day of joy is worth more than a lifetime of almost. Find it. Doug

Hi, I'm Bill and am 62. Was diagnosed in April 06 with pancreatic cancer in the tail, 14x10cm. UC Davis in Sacramento was going to remove it, but there was a met. in the liver. Based on that, they cancelled the operation. Was on chemo, Gemzar, and Tarceva for 6 months but the tumor still grew. In Nov. I switched to a different oncologist, and he referred me to Stanford.

 They told me after reviewing my records to quit Gemzar and Tarceva, because it is a neuroendocrine tumor and it does not respond to that treatment. Just had another scan and also an octreotide scan last week. I visited the doctor and he informed me that the tumor was stable. He has almost 40 patients with a neuroendocrine tumor. He says you can live a long time with that. He also said that the only cure is resection, but in my case it would be very complicated and risky, as they told me at UC Davis in Sacramento in May 06.

Based on the findings, he recommended I do nothing and return in 6 months for another scan and consultation. I'm at peace with that. I have no symptoms whatsoever and lead a normal life. It is hard to understand that life is practically normal with what is going on. But I know the Lord is in control.

 I'm still tired from the chemo, but the dr. said that would last for 3 months, since other damage is done as well and it would take the body that long to heal itself.

 I do take homeopathic treatments in Reno, NV and believe that it helps keep the immune system strong. 

Look forward to hear back from you and others with your thoughts.

 

Bill d.  

 

On 2/13/2007 Metta1 wrote:

Hello

I (51 healthy female) was diagnosed with a large tumor in the tail of my pancreas 3 months ago. No symptoms but found while looking for something else. Unfortunately, the scan also revealed two small liver mets. No response to Gemzar/Tarceva. There are two surgeons from Johns Hopkins who want to operate even though it's metestatic.My questions are:

What are the experiences of anyone with this less common, tumor in the tail of the pancreas?

Has anyone undergone surgery with liver mets present and their health afterwards, chemo taken, etc.?

Much thanks in advance for any information - Susan

 

My Mom was diagnosed 2 1/2 years ago with a tumor in the tail of her pancrease.  It was operable and she did undergo chemo of tarceva and gemzar with some success. However in June of 2006, the chemo was killing her rather than the cancer.  At this time, she is down to 75 lbs. (lost about 50lbs) and I believe that we are at the end of her life.   Hospice has been envolved since September of 2006.  Doing chemo has prolonged her life I believe. My mom's cancer had not spread to her other organs as of June, but now I think it has spread, to where we do not know, because we are in hospice care we are unable to do any further testing to find out where it might be now.

My mom was told that she had a 15% chance to make it 2 years if she did to chemo and less if she did not.  She has lived long past anyone's exepectations. 

 

Good luck to you in what ever you choose.

 

Thank you all for your responses.. After meeting with a surgeon who only operates on pancreatic cancer at Thomas Jefferson in Phili and oncologists at Mass General and Johns Hopkins, we have been surprised regarding the support we have been given for surgery, even by oncologists whose hospitals wouldn't do it. I have surgery scheduled for mid-march. I believe this will be a positive experience. Only time will tell. Any suggestions for pre-surgery prep?

 

Hi you should be through your op by now and I hope at home recovering.  I had a tumour in the tail of my pancreas discovered march 06 and underwent a distal pancreatectomy and splenectomy in April 06. I am 32 yrs old Female in Scotland. I had bowel probs after surgery and lost a lot of weight, this is gradually got better through taking mebeverine and creon and I have started to put weight back on 6 kilos in the last 3 months! Keep strong and take things easy, best wishes for recovery.