iowagirl

Darla, Do you still have the window open for the obituary website for LisaS? Sometimes that is the problem seeing posts. You have to close the window for the site and then reopen to see your post. I went to the site and can now see all of our posts, including yours.

Julie T.

Thank you for letting us all know about Lisa. I’ve posted on the condolence site also and urge everyone to do so.

Duke…it sounds to me like your onc does not want to be bothered…to even try. Your onc should be going to bat for you and pleading your case, even if it seems impossible. Why not turn over all the stones and give it a shot? Is there anywhere else you can go…..even if you can’t swing Mayo. Come to think of it…why not contact Dr. Alberts and ask him this question? He ought to know if it has been done…getting one of those drugs approved and covered. If he says it’s possible, even with special circumstances, then you could present it back to your onc and see what she’ll do. If she says no….she apparently is just too “busy”. If Dr. Alberts says that it’s possible, you might try to get him to go to bat for you with insurance an drug companies….as being a Mayo doctor, and an expert in this field, they might take his application more seriously. Just an idea. I’d personally not waste anymore time with the local onc. But, if you do, I’d ask her if it were HER family member…her husband…her child….would she try anyway.

Julie T.

Darla,

I “think” that things may have changed some about the needle biopsy. We asked at the time….and was told that there was “very little” chance of seeding, the way that the tools worked. It still isn’t impossible, but very unlikely. I wish it were 100% so. We did also ask our Mayo oncologist after the fact…if seeding may have occurred because of the liver tumor biopsy, and he said it was very unlikely….same explanation as the local IR guy.

I suspect that had I gone straight to Mayo though, they would have not done a biopsy. From what I’ve read, that whatever was in the liver needed to either gotten out or treated….and basically, the current thinking is to just go in after it if it shows signs that it must be either liver or CC cancer. My surgeon took one look at the CT….and said, “I know what this is…I’ve seen it before.” And man, was she sure of herself. But, the woman only operates on livers and pancreases…and she apparent did know what she saw. It just shows…the more experienced the doctor is with the CC, the better off you are usually. I don’t think she would ever have bothered with a biopsy.

Duke…I have struggled with this question also….as you know. It makes no sense to me. Except, I’ve come to believe that possibly the risk of death from a surgery for a cancer that can’t be cured or gain significant survival time, may play into the decision. In other words…..if the surgery doesn’t go forward because of significant risk of death….then the patient may have more time left, albeit, not the amount that they want. I think that may also be the case when someone has an aborted resection…..though that really drives me nuts. My surgery was laparoscopic…..to remove the whole left liver lobe….and as such….if they’re going to do that much laparoscopically, why not go ahead and do it…and try to gain some extra time…..even if some mets are found when they first go into the abdominal cavity.

My answer…..have the patient sit in on the tumor boards when surgery is discussed….and find out what the patient wants. If the patient wants to take the risk….and the docs have decided to operate anyway, why not just include another clause that absolves the surgeon from liability for the decision of the patient….and give it a try. I suspect with newer surgical techniques, they might find, among some of the better and more aggressive surgeons, that there may be some good outcomes. Sometimes, the only way things change in medicine is when some surgeons or doctors buck the status quo….and try something new….and have success….write it up in JAMA….and then more doctors jump on the band wagon and try it.

Example: When I had a heart attack in 2002….I had a stent placed in my heart artery. The cardiologist went into my wrist with the cath instead of through my femoral artery in my groin. I had a very strong pulse in both arteries….and he decided that was the best route…and he’d been trained to do it….apparently the only one in town. I saw another cardiologist for followup….and he wanted to see my incision…so I showed him my wrist….on which you could not see even where the needle went in. He was amazed…checked my pulses…said…”You’re lucky….you could have had the artery occlude. I wouldn’t have used the wrist…only the artery in the groin,” Well…he didn’t know how. Fast forward about 10 years…and another doctor came into town….and the same cardio group is advertising how he does the stents through the wrist and how much better it is for the patient, recovery, etc. AND…he’s teaching the other cardio guys in his group how to do it.” Ten years ago…..doing that angiogram and stent through the wrist was out on the edge of medical care….but now….the same doctors who said it wasn’t a good thing to do are advertising that they know how.

So, as patients…as CC patients….it seems that we have to be very proactive and aggressive to look for more opinions….and esp for the opinions of doctors who have shown themselves to be aggressive…more so than others…even other “experts” in CC. By doing our homework, with which this site and posters help, we can find some of those more progressive and aggressive doctors and surgeons more easily….get several opinions from those who have been shown to be willing to take a chance….and hope that they feel their skills will allow them to be of help. I think that even if I was told that it wasn’t a good idea…if I was sitting face to face with the surgeon in a consult, I think I would push back…..and tell them I was willing to take the risk if they were….that I believed in them. When I was at Mayo…my surgery really was pretty clear cut (pun intended), but the oncologist I saw first seemed somewhat reluctant to make the call to do surgery…at least that’s what it seemed. I told him at the beginning, I was diagnosed at home with CC and was there to have surgery. He did set up the surgical consult…and when we met up again, just before the consult….he said, “Well, you got your surgery.” I wasn’t quite sure what to make of that comment. But…just saying…I think somethings you have to push….gently and keep repeating.

Another example…one not related to CC, but applicable to the discussion: When our first son was born at 29 weeks, he was born with no breathing or heartbeat. I had a fibroid tumor in my uterus the size of a volleyball…bigger than our 2#2oz baby. Due to a really horrible situation, where no one believed that I was in labor (even though I had been in the hospital for 3 days prior for preterm labor due to the tumor degenerating) no OB was in the hospital and no neonatologist. When the neonatologist arrived he didn’t have time to even scrub, so he told us later that he did all the procedures under non-sterile conditions and was sure he had compromised our baby’s lungs beyond the prematurity issues. However, he had been quicked told what the situation was……that we likely would never have more children due to the large tumor. So, he made the decision to go ahead and try to revive our son….and did. Unfortunately, our son did die of lung problems two days later…probably due to infection rather than prematurity. That said….I will be forever grateful to that doctor for giving us our son for two and a half days….days that changed our entire lives. He went against “standard practice”, which would have been to not do anything because he could do it under sterile conditions. Did he do harm….????….yes…..but the other choice was worse. We had our son for two days.

Doctors will do what doctors will do….some will take the professionally safe route….and others will do something that makes them truly the great doctors. They won’t succeed all the time…..but they “try”.

Just my story…and my opinion.

OH…by the way….I had surgery at Mayo in 1978, 3 months after the birth and death of our first son, and had that huge tumor removed. One of the two top gyn surgeons in the world, located at Mayo, did the surgery, when our local doctors told us it wasn’t possible….I ‘d have a hysterectomy and we should start adoption proceedings. I found the surgeon myself and made the appt myself…and when we discussed it with the local doctors, they told us, “Oh yeah, we’ve heard of him…he’s supposed to be really good.” REALLY? They conveniently told me they didn’t know of ANYone who could do the surgery , except possibly their buddy at a local hospital, but when asked, they refused to say that he’d even done a similar surgery. We did go on to have another child, our son, Mike, and he has given us a grandson and another on the way. Life can be good, even after the bad. But, you have to push…and push hard sometimes to get what you want….and what you deserve. Even then, you still may not find it. We just got very lucky.

Julie T.

Kris….I know that there’s a difference between the wonky port I had and yours, that has worked fine for 4 years. Because of the weird positioning of my port, they tended to get an edge of it, and that’s when it wouldn’t work right….couldn’t do a blood draw…no blood return….no matter what they did. One time, they even tipped me so far back, I thought I would soon be standing on my head. Anyway, they finally had to resort to withdrawing the needle, having one nurse hold the port in a better position and then re puncturing, sometimes up to 5 times, to finally get decent access. Even though yours has been working fine all this time, maybe they just didn’t get the needle quite right that particular time…maybe a little too much to the edge of the port. Just another thought.

Lainy…,break out the chicken soup for Duke!!! We’ve got to pump him up a bit for next week.

Julie T.

Matt…maybe that’s why the doctors don’t check my CA 19-9 any longer….since it didn’t register as abnormal from the get-go. Thanks for the additional info about yours. That makes me feel a bit better that it isn’t something they’re forgetting about.

Julie