Please Need Help

Please help: About May 1,'09 my sister,age 65,was diagnosed with PC... tumor is in  the "body" size 5..Finally after six weeks a biopsy was done, down the throat,,needle in her side. A week later it came back inconclusive. My sister's daughter..insisted that something be done..NOTHING BUT PAIN MED"S has she been given. Anyway,yesterday she had another bioposy..taking much more fluid this time.. Now we wait again.. The doctor's are rather indifferent about the whole thing..She has Kaiser Insurance and is having to use their doctors and facility.. They did say it has not spread and appears to be "incased" in the area.. it also has gone from 5, now down to under 4 in size. WE ARE so afraid and would really appreciate some information or maybe just a shoulder to cry on..I hope this makes sense.. any input would be so greatly apreciated.. Margory

On 7/14/2009 for my sis wrote:

Please help: About May 1,'09 my sister,age 65,was diagnosed with PC... tumor is in  the "body" size 5..Finally after six weeks a biopsy was done, down the throat,,needle in her side. A week later it came back inconclusive. My sister's daughter..insisted that something be done..NOTHING BUT PAIN MED"S has she been given. Anyway,yesterday she had another bioposy..taking much more fluid this time.. Now we wait again.. The doctor's are rather indifferent about the whole thing..She has Kaiser Insurance and is having to use their doctors and facility.. They did say it has not spread and appears to be "incased" in the area.. it also has gone from 5, now down to under 4 in size. WE ARE so afraid and would really appreciate some information or maybe just a shoulder to cry on..I hope this makes sense.. any input would be so greatly apreciated.. Margory

I'm so sorry to hear about your sister, My Mom has stage 4 Pancreatic cancer it has spread to her liver, have they done a CT Scan? that is the only way they found my mothers, They didn't do the biopsy down the throat they went into the liver. if it has not spread to any other organs, they can go in and remove the pancreas and she will be on insulin the rest of her life, that beats having cancer. If it has spread outside the pancreas they can only treat to prolong her life. If she has not had a CT Scan, get demanding...Remember the Doctors work for us,we don't work for them. Call her insurance company find out info on what is covered and why it takes so long to have things done. Time is not on your side here. You have a short time window because it spreads like wildfire. We are on month 4 and chemo is taking it's toll..It's ok to cry, I've cried till I can't cry anymore, My Mom is 67 and a very young 67. she has lost 50 pounds and now we are dealing with the kidneys not working right...It's not the cancer that kills you it's the effects of what the chemo does to you. She will be in a lot of pain until they can remove or shrink the tumors, I'm sure she is depressed get her on some antidepression meds. Just don't let her give up, she has a fight on her hands and needs all the support she can get at this time. As her sister I'm sure you can make her laugh, that is the best medicine, I heard a joke the other day, My Mother loved it and I got a laugh out of her, here it is... A women was dying of cancer and was with her daughter living it up at the bar, a few of the womens friends came in and said why are you so happy she said will I'm dying they ask from what, what do you have the women reply I'm dying from Aids... the lady's left and her daughter said Mom you don't have aids, the mother said well now I don't have to worry about them trying to mess with your father after I'm gone... A smile does the soul good, knowledge is power, find out everything you can, and then some. www.pancan.org is a good site. This site has helped me.. Take the bull by the horns girl and run with it.. I will keep your sister in my prayers..And you also. God be with us all.

First, I am truly sadden to hear about your Mom. Second, under such difficult circumstances,,thank you so much for taking the time to email me. I can not express how much I appreciate it. I'll keep you and your family in my prayers. just to let you know, my sister did have a CT..scan  which I should have mentioned, they cannot identify what type of PC she has, and without that information they can't treat her.Atleast this is what they said. You are so right that time is against us.At first we thought it was such good news that it had not spread..but if they don't do something soon we are afraid it will.  Also, they did say it was to big to be removed. Cannot try an shrink unless they know what type? Anyway..thanks again..God bless your Mom. 

On 7/14/2009 for my sis wrote:

First, I am truly sadden to hear about your Mom. Second, under such difficult circumstances,,thank you so much for taking the time to email me. I can not express how much I appreciate it. I'll keep you and your family in my prayers. just to let you know, my sister did have a CT..scan  which I should have mentioned, they cannot identify what type of PC she has, and without that information they can't treat her.Atleast this is what they said. You are so right that time is against us.At first we thought it was such good news that it had not spread..but if they don't do something soon we are afraid it will.  Also, they did say it was to big to be removed. Cannot try an shrink unless they know what type? Anyway..thanks again..God bless your Mom. 

Their are wonderful people on this site that have helped me cope and make the day, please read some of the post, I just was reading about whipple surgery, they go in and remove the pancreas and a few other organs that we can live without, I would check into this. My Mom is not a candidate for the whipple because it had spread to the liver, but if it would of been caught in time and just in the pancreas like your sister they said they could of done the surgery, her tumor was in the middle of the pancreas, and it was large also, but it travel to the liver, How can a tumor be so big yet still be just inside the pancreas and yet they can't remove it. Makes no since to me, I would get all of her medical records,CT Scan copies anything you can get your hands on, They will give you copies of all her test, What are her blood marker numbers? If you don't know find this out. Has the pancreas enlarged and is it pressing on a main vein? Are you trapped with only using the one doctor, can you get a referral to another doctor, I guess what I'm telling you is don't stop looking for another route to take and don't let them tell you this is all we can do, I just wish My Mom could of had the whipple and we would of caught it in time, but it wasn't in the cards for us, This is the 2nd parent I'm losing to cancer, I lost my dad to lung cancer 23 years ago he was 48, so this isn't my first rodeo. But treatment has changed for the better. And I hope to have her around for as long as the Lord is willing...Now go find out why she can't get it removed if its only in the pancreas tell them to explain it to you...And why they won't consider the whipple surgery, i was just reading about someone having a very large tumor and they did the whipple. Don't take no for answer... And by the way get some rest yourself Your going to have to be looking fresh when you see your sister not all swollen eye..Let her know ya'll are in this together.God be with us!

 

On 7/14/2009 for my sis wrote:

Please help: About May 1,'09 my sister,age 65,was diagnosed with PC... tumor is in  the "body" size 5..Finally after six weeks a biopsy was done, down the throat,,needle in her side. A week later it came back inconclusive. My sister's daughter..insisted that something be done..NOTHING BUT PAIN MED"S has she been given. Anyway,yesterday she had another bioposy..taking much more fluid this time.. Now we wait again.. The doctor's are rather indifferent about the whole thing..She has Kaiser Insurance and is having to use their doctors and facility.. They did say it has not spread and appears to be "incased" in the area.. it also has gone from 5, now down to under 4 in size. WE ARE so afraid and would really appreciate some information or maybe just a shoulder to cry on..I hope this makes sense.. any input would be so greatly apreciated.. Margory

Hi Margory, I read alot of the post in this site and other sites about the size of the tumors in the pancreas and the fact that they are to big to be removed by having the Whipple. I just don't understand that and here is why, in April of 2007 I was diagnosed with stage IV neuroendoctrine, islet cell, pancreatic cancer. The tumor was very very large it was through out the pancreas,head, middle and tail, and it was pressing  on nerves and blood vessels including the main portal vein, which was damaged and to this day is still thrombosed. I had the Whipple surgery on June 27, 2007 and the entire pancreas was removed along with the spleen and gall bladder. A viein from my neck was used to reconstruct the portal vein but it was unsuccessful. I have a wonderful oncologist who did the surgery and he told me that it depends on what he finds during the surgery, wheather or not he'll even finish with the surgery. He completed the surgery, even though the cancer had spread to lymph nodes and the liver. I believe the surgery is the only real cure for pancreatic cancer of any kind. My oncologist also told me that chemo and radiation will do NOTHING for the type of PC cancer I have. I am now going into the 19th month of a clinical trial. It a blind trial so I nor the doctors know for sure if I am recieving the real drug or just a placibo. I believe that I do have the real drug due to the fact that I had some side affects and the leisions on the liver are shrinking. The drug is a chemp drug called RAD001.

As for the insurance company you have, call them and tell them that everything that your sister needs done is medically nessessary for the good of her health and see what they say. My husband is retired military and we have Tri Care HMO. Alot of the doctors that I see are not within our network but because its for the good of my health and is medically nessessary they, Tri Care, are covering it. It doesn't hurt to call and find out about these things. You have to be your own doctors these day and stay on top of things and ask questions. The Whipple surgery is a big big major surgery, cause after removal of the organs all the remaining organs will have to be reconnected to each other that are not normally connected together. I still have proublems with bowels and intestinal issues, I'm now diabetic, insulin dependant, and take enzymes 3 to 4 times a day. The chance for reacurrance of this cancer is very high so I see  my oncologist every 3 months and will do so until the end, which Im hoping will be for a really long time.

Pancreatic cancer is ugly, but there is hope with the new chemo treatments out there. Help your sister to stay possitive and help her with all you can. I am blessed to have my sister by my side. She gives up her Wednesdays off to drive 1 1/2 hrs to the cancer center where my trial is taking place every 4 weeks. We usually make a day out it and go shopping and do lunch and just spend time together, I'd be lost without her, so be there for your sister it will be a great comfort to her.

I know I rambled on and on so I'll just finish with God Bless your sister and God Bless you, you will both be in my prayers and let me know how your sister is doing, I'll be here if you need anything, I'm always on the computer, I'm hooked  lol.    Bye for now, Dawn.  P.S: you can email me at 

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 also if you'd like.

JUst keep asking questions. My brother has PC stage IV but suddenly there appears to be poss surgery option. We have sent the CT scans around to the best and some radiologists are better / more skilled than others. The oncologists and cancer surgeons read their reports. Yes they look at the CT scans but keep asking.

IT is a BAttle , and you may win but you must fight and with a good team.

good luck.