There probably isn’t any decision I’ve had to make in my life that was harder than whether or not to have the Whipple. I felt like my life was on the line – it was – and I had to make the correct decision quickly. It took two weeks to schedule an appointment with the surgeon, so I used those two weeks to do research, way into the night sometimes. Wasn’t sleeping that much anyway. I needed to know as much as I could so my decision would be the best I could make it. I did a lot of prep (some of the sites I visited and most of the books I read I have listed under Resources). Then I sat down and wrote all the questions out that I needed the answers to so I could make my choice.
If that guy in the picture had a skirt on, it would have been me; I sometimes felt like my head was going to explode. But finally I settled on my life or death questions; what was really important to me. I asked myself what I could live with and what I couldn’t. I did as much work before I saw the surgeon as I could. I can be cowed by experts so I’ve learned to be prepared, have my questions written down on paper; it’s the support I need to stand up for myself. These are the things I finally settled on to ask when I saw my surgeon:
Is the Whipple my only choice? If I have the Whipple, will I get diabetes or stomach paralysis? Will I ever be able to eat normally again? Will I have pain? If so, for how long? Will I be able to work again? How long will the recovery be? Will this fatigue I read about ever go away? How many times have you done this surgery? What were the outcomes? How often is this surgery done in this hospital? What are the outcomes?
So here’s what my doctor said. Since my cancer was Stage 1, that is at or under 20mm (2cm) & had not spread, I was told that the Whipple was the best possible chance I had to beat the cancer. He told me the outcomes from the Whipple aren’t great, but that it was my only hope for a cure. My oncologist said 20% chance of living to 5 years, my surgeon said 5% (I have never been able to pin down an exact percentage; just when I think I’ve found the “true” answer, another expert tells me that’s wrong).
Then my surgeon threw me a curve I hadn’t had on my list – the surgery itself. He told me if I was going to have a stroke, if I was going to have a heart attack, I would have it on the table. It’s a long and complicated surgery – somewhere between 3 and 8 hours. Statistics are all over the map. I have read as low as a 2% chance of death during surgery to as high as 15%. I understand that much depends on the experience of the hospital and the surgeon that does the operation. Asking how many of these surgeries he had done and how successfully and what the hospital’s mortality statistics were with the Whipples performed there was difficult for me. But I did. I gritted my teeth and asked – it was my life on the line after all.
My surgeon was so wonderful; he was exactly the kind doctor I wanted to see (related – see Scripting in the Techniques section). I wanted the unvarnished truth. He brought a surgical atlas in, opened it up to the Whipple closures and said “Look, see how many ways there are to close this surgery? You know what that means? It means, there isn’t any good way”. He told me about pancreatic enzymes, how strong they were and the possibility they can leak. He was straightforward with me in other ways. I can remember him saying he’d done enough surgeries that he didn’t need to prove himself, that he already had his boat, so he didn’t need the money. He was as honest as I’d hoped he’d be. For me, complete, unvarnished information was essential.
Some other considerations I took into account:
These are the questions I asked myself when I was trying to figure out whether to get the Whipple or not: how much pain can I stand? How much pain am I willing to live with for this present moment? How much pain am I willing to live with for the rest of my life? How many limitations am I willing to live with? Can I live without hiking in the mountains again? Fortunately for me, I didn’t have questions about taking care of small children or other dependents, because my children were grown and capable, most of my family have passed on and I only really had responsibility to myself and my husband. I’m know it would have been a much more difficult decision if my children were small.
Will my insurance cover my costs? Would it cover treatment at more complimentary places, like Cancer Treatment Center of America? If the cost for this had been very high, what was I willing to do? This is tricky. Life is worth more than money. On the other hand, I wasn’t willing to send my husband into bankruptcy. That just would not work for me.
I had to figure out what was most important for me and my husband. I watched a friend go through her family’s entire savings as she battled breast cancer; she was devasted by that at the end, and it taught me what I didn’t want. I was fortunate to be covered by very good insurance and so the financial issue wasn’t huge for me. I can only imagine how painful it must be to have to decide to forego treatment because there’s no way to afford it.
Emotional and Spiritual Aspects
I spent a lot of time on this. I cried, I asked for help. I breathed. Truly deep, steady breathing was of huge importance to me right then. I went easy on myself. I gave myself permission to fall apart (generally I did it alone – it was too hard to do it in front of others). I found a lot of quiet time and deeply thought about it, prayed about it. I found it helpful to write it all down, one side the positives, one side the negatives. I went online and tapped into chat rooms and different threads. I was listening to people who were grappling with the same thing I was, either as patient or loved one. I found them very useful.
When I was still considering surgery, I researched ways to improve my odds of success. I read enough to believe that a good attitude and good mental preparation might help me respond better to surgery. Studies have reported reduced blood loss, fewer complications, less post-operative pain and a shorter length of stay in the hospital for those patients who took training in relaxation and hypnosis. Another study showed that even several days after an operation, nurses were able to identify 80% of the patients who have gotten relaxation or hypnotherapy training by their progress and reduced need for pain medication. Right away I bought a set of CDs to be used specifically for surgery from a source I had used in the past for other things; this was a set of CDs that are dedicated to the surgery itself. So there is a Pre-Op CD you listen to before surgery, a CD made to be played during the surgery, and a CD made for the recovery period. The last three CDs are focused on healing (There are many choices for this type of CD. I think, looking back, I probably should just have asked my doctor to recommend one). I thought I would need a lot of prep work to make this happen within the hospital, but it seems that surgeons and hospitals have seen the healing potential in these types of CDs and so many have arranged ways to allow patients to use these before, during and after surgery. I ended up never using mine and donated it to the cancer library at my oncology center. But it was nice to know that there was this kind of help available.