What do you think?

Trubrit said:

Article

On my FB page, Lizzard said that she had looked up the actual article in 'the Oncology Journal' and that it 'gives a little different slant'.  

From my understanding of the link I posted, it says that the Cancer patient is the one that lacks understanding, but I think the actual article might refer to the fact that the patient doesn't get the full infomation leading to the lack of knowledge. 

I will have to ask Lizzard to direct me to the article. 

SUE

to the article in the Journal of Clinical Oncology- I hope this works.  it it doesn't come up as a link, maybe it will work as a cut and paste: http://jco.ascopubs.org/content/early/2016/05/19/JCO.2015.63.6696.full

Grace/lizard44

Our first year was confused by overformalized procedural analysis and reporting, with conflicting information, and not drs listening about prior nonstandard treatments.  The doctors were unprepared for what they found, the extra lab work requested, and nonstandard neoadjuvant treatment.  

We were being whipsawed by success. A concrete, dire prognosis was short circuited by the cellular destruction of the initial evidence with a localized complete response, the drs rigid chain of deduction, and rigid report on these things.   The mets showed clearly on CT and at surgery but those removed were rotting mush due to massive immune reaction. The one oncologist that directly addressed me on a dire forecast, 17 months, wouldn't explain his thinking or directly contradict (or elaborate) another dr on the pathology.  They all knew, but no one had the "smoking gun" yet.  (They would have needed a PET scan or an invasive biopsy at diagnosis). So Catch-22, all these mets supposedly didn't exist until confirmed by a second surgery.    Their plan was chemo and what will be, will be - with little warning since it wouldn't change their treatment much and would simply cause upset.    

The important things were:  it's deadly serious, time to get busy, take integrated treatment steps, and monitor things closely even when looking good.  

Hearing them say what I already knew wasn't going to help Cindy's spirits, so I didn't allow them to speak about time frames and prognosis. I won't hear of it should my situation take a turn. I don't need doctors telling me anything but whats the next course of treatment. I buy the occassional lottery ticket, so I'm perfectly willing to believe I can be 1 in 10,000,000, why not believe you can be the exception when it comes to this. I'd rather go out a cock-eyed optimist, because fear and anxiety are a waste of time and energy, even more so if you wind getting hit by a truck or something........................Dave

hi, new here but my story began last Oct. when my surgeon found a tumor while trying to give a colonoscopy. The op was successful, got clean margins, 14 nodes were tested and found cancer free. But there was perineural invasion present and one liver lesion she tried to find laproscopically but could not find it. The pet scan showed one spot in each lung apparently to small to biopsy. Had biopsy done on liver and it was from the colon. Oncologist gave me three rounds of oxy with xoloda but stopped as my blood levels dropped and said since the lesion had not grown or shrunk that told him the chemo I was on was not working and he didn't want to do any more harm and sent me to an interventionalist radiologist who said I could have a resection but he could also do an ablation and since i liked the way he talked and assured me he could get it all and it would cure that one lesion and was good enough to tell me but that it was just for that lesion and others could pop up. After the procedure i went back about a month later and had contrast scan which showed it was successful and he saw no new ones in the liver or lungs. I was scheduled to see my oncologist a month after that talk but he (oncologist) made me go have another pt/ct scan and when he saw me he just said your liver glows and you have five new lung nodules and see you in three months. So i went back to the radiologist to see if he could enlighten me and he saw the disk from the scans and agreed with the new report which said basically I have four new lesions the largest one was 2.6 by 2.1 cm suv 6.8 and it glowed like the sun on the ct scan but the other three did not have any light in them. The pt scan ( he put them side by side) you could see two glow spots. But the lung nodules , tho now one is 8mm did not show up on pt scan. His advice was that he could ablate the large one and get it, but because of the other three were on the periphery of the liver he could not do that procedure but thought embolization (seeding) was probably the best way to go. I told him my oncologist who he thinks well of basically told me he could not give me chemo since he didn't know if it was from my melanoma or colon and yes, forgot to say earlier that I had just found out about a spot on my cheek right before my colon surgery was to be done and which was put off a few weeks while i went for a second opinion for that, of which ended in a flap surgery ( successful, clear sentinal node) in Jan.  By that time i had two chemo sessions behind me, had to wait a six weeks to have the third one. Went back for the fourth but he nixed it because of what i mentioned earlier....I am seeing another radiologist highly recommended to me who is a radiologist/oncologist to see what he thinks but from what i told him on the phone he thought that the emobolization was a good idea as he knew the radiologist and trusted his judgement and suggested i also go see my original (colon) surgeon because he thinks highly of her, to see what she thinks because she keeps up with the latest since she operates on colon/rectal cancers. So here I am, sitting and wondering how so many spots showed up in one months time. Since only the biggest one glowed on ct scan, the radiologist told me he could biopsy while ablating the big one. But he also said he was very certain they were from the colon. Was going to call a major center but after reading so much, i almost feel like I know what can be done. There are only so many things out there and if they can be done here why go? But will wait and point blank ask my surgeon and this new radiologist/oncologist who did mention immunotherapy/stem cell therapies etc...........as did the surgeon who did the op on the face which is or seems to be healing nicely as a big chunk was removed but was grafted......I will also ask them if going to a major center would give me any other choices..........any thoughts?  And my prayers go out to all of you because i have been reading this blog for months now and finally thought it time to join in....

I wonder if it has to do with they way it's worded.  I've been told many times that I was stage IV and that the possibility of living 5 years was really slim (I think 18% in 2007) and I would be on chemo until I die.  However, I have never been told I was terminal, meaning I was absolutely going to die from cancer.  In fact, I've had more than one oncologist say that they are able to with some cancers treat as if it were a chronic disease, even for stage IV.  So to me, Stage IV is not good, but not terminal until they say terminal. 

Now my mother-in-law had stage IV lung cancer and her oncologist say unequivocally, and rather harshly, "you do know you're going to die from this" as my mother-in-law was asking about treatment options.  I did not like that doctor, and tried in vain to get her to dump the b!$@h.

I would say regarding the stats, when I was first diagnosed in 2007 Avastin had just been approved and there were no 5-year stats for FOLFOX with Avastin.  Did that make the difference, I don't know.  But to me the statistics are only good for the treatment you are on.  If they add something new, that changes things, so I pay little attention to the stats.  Plus, I want to be one of the ones that beat the stats!  Traci