New to Board, to CC, that’s what they think I have now…

[jeffg]

Patti…. The bottom line in my opinion is you need a GI surgeons opinion on wheter your tumors are resectable. Resection is always the best possible route to take for the best long term prognosis. Wish you the best as you continue to rattle cages.
Jeff G.

[pattib]

Hi again, thank you so much for responding!
I was at the cancer center today for my CT scan results and they gave me a form to fill out to get a copy of my records. They will release them to ME and I can send them wherever I want. As for the biopsy slides, I was told that generally they are requested by some other institution on my behalf when someone wants to see them. From reading someone elses posting this doesn’t match up, but we’ll see.

I talked to Mayo Clinic in MN today and they started a file and told me how it works if I don’t have insurance to cover. Similar to other posted experience, they require a $3000 deposit before they will see you and then use that money for tests/procedures, whatever. When it is spent down, they require more upfront payment before they will continue.

Ok, I’m avoiding the CT results. One of the tumors grew
It went from 3.8×3.2 to 4.7x 3.4 cm and is in the lateral segment of the left lobe. Another in the left lobe changed sizes, but not much bigger, if at all. The one on my right lobe was 3.2×3.2 and is now 2.8×3.5, again, essentially the same.

They want to start me on the oral chemo Xeloda. The nurse told me that one of the main side effects was diarrhea, and when I told her I have that constantly for like 10 years, she said she wanted to get back ahold of my Dr and ask her about that. I have another appointment with blood tests Monday morning.

I can’t say that I’m a happy camper. I hated the wait and see stuff, but now I hate hearing that one of the adenocarcinomas has grown. Just won’t be satisfied I guess! I gave her my whole spiel about consulting someone else, finding out about surgical possibilities, referring me to someone who is more experienced in GI matters, etc and she promised to discuss all of that with my Oncologist too (My Oncologist is out of the country for 3 weeks).
So……….. maybe the nurse will do better talking with her than I did last month. Crossing fingers. I’m so glad I found you guys!

[marions]

Patti,
There are physicians willing to look at your reports without it involving any cost to you. Dr. Jenkins, at the Lahey Clinic, is one of them and I would think that others had encountered similar experiences with other specialists in this field. I assume you have had a triphasic scan. That and all reports plus lab results (including biopsy) should be sufficient to forward for another opinion.
The best of luck.
Marions

[thecdr]

It is criminal that in this, one of the richest countries on earth, people have to lose their homes and go bankrupt in order to get health care. Whether you believe in socialized medicine or not, something has to be done, it’s ridiculous!

[bill]

http://www.mayoclinic.org/billing-sct/charity.html

This is what I found on the Mayo Clinic AZ web-site. I hope it’s not just marketing BS.

My wife, Kathleen, was blessed to have great insurance and no claims or treatment were ever denied. I find it tragic that receiving necessary treatment could be based on the ability to buy health insurance.

[pattib]

Thanks for writing Karen!
At least that gives me an idea of what might happen if I approach Mayo in MN. Fortunately the AZ Ctr will work with me and not deny service, bless their hearts, so I may be restricted to just there, and really, they are wonderful, but as I’ve been told and told, I really could use a second opinion! Oh well, I will find out tomorrow what they have to say about my CT scan last week. Praying for good news!
Hugs to everyone, this is no fun no matter what your situation!
Patti

[karenb]

Hi Patty,

First I want to say I am so sorry that you are in this situation. I haven’t posted for a long time, but I read the other posts regularly.

My younger sister had the same problem when she was first diagnosed with this horrible disease. We took her to the Mayo in MN, but we had to put 2500. up front, before they would even see her. Then we got sent back to billing every time they wanted to do another test, and we would need to put up more money. My mom, my brothers, my sister and myself were putting it on our credit cards. So very frustrating and unfair! She was only 32 years old, and did not have health insurance even though she worked as a med aid/nurse’s aid for several years.

It is hard enough waiting for appts, phone calls, watching your loved one in so much pain, but then to have to worry about the medical aspect of it too, it was terrible.

Hang in there and keep looking for resources. Hugs!!

Karen B.

[ron-smith]

All I can say, again, is thank God for our National Health Service here in the UK.

[pattib]

Hi Bill,
Thanks for the reply. You BET it’s going to stop me cold from getting full care! I too am looking at the candidates closely, but no one is addressing the gaps.

Once you qualify for Disability (SSDI) you have to wait TWO YEARS to qualify for Medicare. Most people who worked as adults will make too much on SSDI to qualify for their state’s insurance programs. We’re talking about $100-200 too much PER YEAR.

Arizona didn’t FUND it’s program to let people who HAD been on their health program, but now were earning a bit too much, from paying a premium (like regular insurance, but based on income) so while the program is on the books, you can’t get it.

I actually had private insurance, finally, after years and years of not being able to afford it. Still couldn’t, as it was 1/3 of my total income, but I did it anyway and lived “small”. During the 2 years I paid for it, they kept changing the coverage until instead of no co-pay for x-rays, CT scans, etc. it was now 20% co-pay and that was on their “most coverage” program! No way can I afford the premium PLUS 20% and that’s not even mentioning the Chemo treatments!!! Oh, of course the premiums kept rising despite the reduced coverage in every category! :rolleyes:

I don’t know how I can afford a second opinion, assuming they (whomever) charges fees to review your records and if it requires travel somewhere – like Minnesota for Mayo Clinic, I’m screwed, so ya, desperate situation.

Thank God right now my mets tumors in my liver aren’t growing a lot, but how long can I count on that? I’ll know more on Thursday!
Sorry to dump so much, but I’m dealing with this RIGHT NOW trying to find a way to pay for last weeks CT scan, and my temper is short. I’ve been on the phone all day calling everyone I can think of. I’ll chill, and just do what I can by tomorrow.

[bill]

Your insurance dilemna is unacceptable and the U.S. needs to fix this problem immediately (I will be scrutinizing the presidential candidates’ health care proposals carefully) . I hope this does not stop you from pursuing the right options for you.

If you go to Mayo-MN, I highly recommend Dr. Stephen Alberts or Dr. Lewis Roberts. I am confident you will at least have a better idea where things stand and at best have some viable options to treat your cancer.

Good luck.

[pattib]

Thanks for the encouragement. That’s what I’m going to do. My appt. is Thursday and it’s going to be with my Oncologist’s Nurse Practitioner, as my doc is out of the country. I was upset about this at first, but now I am going to tell the Nurse that I want a copy of all of my records and my biopsy slides. That feels easier to do right now than with my Oncologist herself.

Then I’m going to contact Mayo. As it turns out, my family lives in MN and my brother actually had a liver transplant in 1999 at Mayo in MN (not cancer) so I’m going to contact them.

I may go to the Phoenix Mayo however as it is closer and I have major financial issues so staying in-state my help. At this point I don’t know.

When this all started it was “rush rush” too and they all acted like I was going to be incapacitated soon. During the chemos, etc I dropped to very part time work and my insurance wouldn’t cover so I went on the state’s insurance (very low income). As part of that I was to apply for disability. So I did and that got rushed through because of the stage IV cancer. BUT, now that I qualify for ssdi I “make” too much money for the state insurance, so they just cut me off of that as of March 1st. Right now I have no insurance at all! Lovely the way the government works.

[bill]

I wholeheartedly agree with all the recommendations to get more than one opinion. This is still a rare cancer and I believe it helps to find a clinic that has more experience with this diagnosis. On the other hand, after reading the posts over the years you realize every case is different and there are so many different options being employed today. You are in AZ so a trip to the Mayo Clinic in Scottsdale might be a good starting point or they may refer you directly to MN.

As far as the multiple tumors, my wife had that issue after she had two liver resections. She ended up being treated with Therasphere at Mayo Clinic and it worked very well for her. Maybe chemoembolization is also an option for you.

Good luck and I would say please keep pursuing different options until you find a doctor you trust who has a game plan you feel comfortable committing to.

Bill

[jillie]

I remember those early days of my husband’s diagnosis very well. We, too, were involved with a community hospital, large university (NCI designated) hospital, then yet again another large university hospital in another state. The sheer red tape and detail managing of it all was mind-numbing. There were days where I spent the entire day on the phone. Other days with sheer frustration of unreturned phone calls, trying to schedule something, worry, and research, and more worry.

What I hated most of all was that everyone we encountered would tell us the tumor was agressive and that we needed to move quickly, yet the next appointment/test/consult would be scheduled weeks away. No one ever seemed to get the story straight. I still want to cry when I remember my poor optimistic husband dragging around his medical records, films, CDs, and slides from place to place looking for some good news.

Things will get better when you settle into a plan and a routine. Best wishes to you.

[pattib]

You guys are amazing! It’s just great to read your notes and hear your support. Since I live alone and don’t have much in the way of family or friends here in Tucson, I get sort of sick just listening to myself!

The thing that got me wondering about my Oncologist was that from the beginning they said I had three masses, all pretty small, in my liver. Still I was told because it was mets from “someplace” else, surgery was not possible. THEN about the 4th CT scan, she says, well, you have too many tumors in all quadrants of your liver. I said “WHAT?” They’d only ever talked about the three, and how they had not grown nor shrunk. She said the others were too small to really track. That got me going. 1st, why did no one ever mention them before? 2. If they don’t track these small ones, how do they know if they are growing, shrinking or if there are more or less of them each CT scan? My trust went down.

That’s when I asked my “big sis” the lawyer, to come and hold my hand for the next appointment. I’d been 6 weeks with no Rx and was worried sick. Still we didn’t get too far, but I felt some reassurance that they were doing everything possible and really, if there was no change from the beginning, why rock the boat?

I talked to the advocate at the cancer center and told her my frustrations and how for the second time, my Oncologist said she was going to have my biopsy slides looked at again. I think it was due to the advocate’s pushing that it really happened this time! AND, now she consulted with the GI cancer specialist and he thinks it is bile duct cancer. What do you know?

All this long winded stuff is in response to is there a surgical solution. My onc says no, or did anyway. Having tumors “all over” my liver doesn’t sound too good, but then I’ve never had any symptoms of blockage or pain. I have no clue if the tumors are in places that make surgery impossible, or if the sheer numbers (if that’s true) preclude surgery. I got the idea from some of your wording that taking my tests to a SURGEON as compared to an Oncologist, might yield different answers. My clinic is an National Cancer Institute designated “comprehensive cancer center” with tons of specialists. You’d think they could consult??

[rae]

Hi Patti,

My dad also had intrahepatic cc, and like Joyce’s mother, did not have jaundice or pain until very close to the end. In fact, he never complained of pain and never took the pain meds until the very end, when he was sedated. His cc was discovered at his regular check-up. When the doctor pressed on his abdomen over his liver, he felt mild pain. This prompted a CAT scan, followed by a needle biopsy. He was diagnosed by a gastroenterologist in the Quad Cities.

My mother asked his primary care physcian to arrange a second opinion at Mayo Clinic in Minnesota (she specifically asked for Mayo MN), before he even met with a surgeon locally. His Mayo appointment was 5 days later. We took a CD with his CAT scan pictures and copies of all his lab results. One thing we did not have were slides with his biopsy. If you get a second opinon elsewhere, make sure these are sent so you can see an oncologist wherever you go. We met with the Mayo surgeon (Dr. Gores or Gore), but were not able to meet with the oncologist because the slides had not been sent. We didn’t know to request them.

In my father’s case, this did not really matter, because it was inoperable – (the tumor was against and partially surrounding the vena cava), relatively symptom free aside from weight loss and fatigue, and elected not to do chemotherapy. He never saw an oncologist, even locally.

I would urge you strongly to seek a second opinion. My dad was comfortable with his decision not to seek chemo, and we were able to support him, because we went to Mayo. That decision is such a personal thing – but that visit to Mayo was really a comfort to my mother and I, even though they essentially said there was no hope in my dad’s case. If it were me, I would have kept seeking a third or fourth opinion, but it wasn’t me, it was my Dad. And he was able to make a better decision for himself because of that visit.

I don’t post often here, because it makes me cry sometimes, but I visit regularly and can answer questions you or anyone might have about my Dad’s experience, either here or privately through my e-mail at rwojdylo@semo.edu.

My prayers are with you, and everyone on this board.

Rae

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