How do I get muliple docs to get stories straight??

nancyann3 said:

No organ metastasis as far as we are told.
We see onc and a resident most time we have an appt. I also talk to nurses in between on phone when I am dealing with appt. and such. I have started pouring on the questions again lately because he is nearing the end of his chemo and just had another PET. Each time I talk to a differnt doc or nurse I get another piece of info. I never understand why the main onc doesn't tell all. I started question the onc and resident about surgery again, because I was told by the surgeon that he could become a surgical candidate again if the chemo controlled and reduced the node involvement around the esophagus. The next thing I know is a nurse is calling me telling me they had a meeting about steve (onc, surgeon) and surgery not a option and NEVER will be, because of the metastatic disease around the esophagus. I asked her to explain exactly where this metastasis is. She said lymph node only and nothing distant. No other organ. I said, cant u take the nodes out to? She said no. I told her that no one knows for sure that these nodes are cancer. I also told her that the onc even said that they could be just reacting to the cancer, infection, stent....etc. I also metioned that I have read about Pet's showing false positives and disqualifing people from surgery that could have. I told her I felt Steve is so close to being a candidate and it seems it all rides on these nodes in question (that no one can tell me for sure are cancer) I also learned from her that it seems the main tumor in the esophagus is gone. Report says there is some thickning,but they don't know if it is still cancer or just irritation from stent..........lol.....this is new news to us!!!!

She made us an appt. to see this surgeon so I could make him explain to me what it is that makes steve no able to have surgery. I wanted to see pics and scans. I got a call today from another nurse saying this surgeon said there was no need to see us now, because he couldn't do anything for him and he wanted to see him two weeks after he had radiation treatments and finished chemo. He would then rescan him and see if there was anything he could do then. (remember this is the surgeon that said he would never be a surgical candidate)

We see a radiation doc on the 11th. this is new. No talk about radiation since the beginning and it was that surgeon that stopped it then and said just chemo may be enough and then surgery. The rad doc was at meeting too and said he thought he could help with node involvement. My question to him will be, what if the nodes arent cancer and u radiate them???......I don't want steve to have to go through something when it could be unnessisary.

It was the June scan that disqualified him from surgery, saying more metastatic disease in chest, but even then no other organs involved. That was the same time that the first stent was causing problems and moving. So I have always questioned that what the pet was seeing was irritation rather then cancer growth. The funniest part is the aug. scan showed no change and that was before outpatient chemo was even started. Sooo, if I only go by what we were told about scans, it sounds like cancer grew fast at june scan and then stopped all by itself without treatment, and stays the same.....so weird. Its from nurses and bits and pieces hear and there I get info about tumor shrink and such.

In the mean time I am watching a man that seems to be slowly improving everyday. Eats what he wants, has started going out to resturants again. Walks faster, visits more. I know that things can change fast and cancer is unpredictable. I also know about false negitives as well and try to stay realitic about everything. I try to keep myself in the real possibilities here and still try to enjoy the good times.

Thanks everyone

nancyann3 said:

Thanks for the response all..
Nothing any of you said in all your posts isn't what I have been thinking of for the last 9 months. I've been around and around with this hospital and cancer center more then I want to count.

I am from the medical field and understand alot of what I hear from the docs and combine that with what I have learned from you. I definatly can irritate them all at the center.
I have nightmares about how they are playing games with a life here. Believe me it weighs very heavy on me. The facts are insurance will not allow many options for us. To get better options for us would mean to move out of state. To move out of state would mean I would not have a job, we would lose a house, our children would lose a home. Have I thought this may be our only option. YES! Is Steve's life more important then anything?? YES! So, this just isn't a matter of finding a second opinion for us. In order for us to get a BETTER option for Steve's care, financially would be devistating for us.

We're not dealing with a small hospital here. He is at a university teaching hospital, so I'm very dissapointed with the communication and crap that goes on. Just know that I see and understand what you all are saying. I agree with you 110%. Just having the means to do it, is the hard part.

We also have never refused treatment that my help him get better. He has a stent and j-tube. Sitting on my coccix is the last thing I have been doing the last year. I am at every doc appt, every chemo infusion. I talk to every doctor, nurse etc......I ask, ask, ask and question question question. I also work full time and take care of two kids and school issues. I am also a caregiver at my work. I'm sorry is you feel your advice is being ignored. That is far from the case. I have learned a tremendous amount from all of you, and believe me I use it! I'm not looking for pity, just for info and to vent, like most all of us on here.


Thanks for hearing me vent again.