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URGH ! -- the struggle with treatment decisions continues


cindy0519

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Well Dad had now been to his primary care physician and back for a post radiation check up with the radiologist oncologist. He had a bit of an infection in his tear duct and has had some issues with rashes that mysteriously come and go on various body parts, so he finaly made an appointment with his primary care doctor. He has also had some swelling and rash in his scrotum that has been a bit concerning. (TMI -I know but was curious if anyone else experienced this)

His primary Dr. is VERY concerned that nobody has really sat down and gone over treatment options (good/bad) with him and finds it hard to believe that the oncologist would just take a "wait and see" approach. Dad really thought that the radiologist oncologist would order another scan (based on the info from the medical oncologist at his Dec appt there) at his appointment yesterday. She (his primary dr) went over all his test results and helped him put together a list of ? to ask and told them that getting "good" medical care today requires being an informed patient and "really pushing" the medical team for answers!! She encouraged him to "raise hell" until his questions are answered and his is given some type of triggering even for chemo or a full blown treatment plan. She agreed that after seeing scan results -- she might release him to go back to work (32 hours/limited duty) and told him if the radiologist did not order a scan (and she said insist on PET) she wanted to be called and she would order the scn -- either way she didn't think it should wait until March when he is scheduled to go back to the medical oncologist. She told him to have the radiologist look at the scrotum issue as well.

Yesterdays appointment with the radiologist oncologist was totally uneventful!!! (this is the first appt I have not flown to AZ for). Basically all he got was a "if it ain't broken, don't fix it" type of response and was informed that doing another scan at this point and time was not possible because insurance will only allow a PET every 6 months. The other areas (groin/hip/thigh) that have been untreated were discussed breifly when Dad raised a question about them .. but he was informed that due to internal organs in this area, they were not inclined to radiate this area until it was causing significant pain. And was informed to return to his primary care physician that she should handle whatever is going on with the scrotum.

He said he got really mad and told the radiologist that he is feeling like he is being told "go home and die and when you are close to death we will see if we can do you in completely with chemo. Until then, enjoy life". He is going to call his primary Dr today and hopefully she will take on the insurance company regarding a new scan. I also asked him to "PLEASE" ask his primary to give him a refferal for a second opinion. Its one thing when I am uncomfortable with what the doctors are saying but when he feels all he is getting is a "death sentence" then it is TIME TO FIND ANOTHER DOCTOR!

Sorry this is so long...really needed to vent!

Hope everyone's New Year is off to a good start!

Cindy

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I am sorry your Dad is getting this treatment. It does not surprise me, however. My recommendation is another opinion and fast. If you read my profile, you will see I actually went for 4 opinions. So do not sit still for this approach.

There must be another facility available - even if it is a drive to get there. Get there and fast!

Kasey

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Kasey,

I AGREE 500% with your statement "There must be another facility available - even if it is a drive to get there. Get there and fast".

My trouble (both pratically and emotionally)is that I am not sure that Dad is there yet! I think he is beginning to get there but not sure he is completely sold on the need for another opinion yet. And until he says "GO" nothing I can do will matter.

I have contact information for 3 oncologist at MD Anderson who specialize in lung cancer (from a patient at MD Anderson) and am at the ready to get the appointment set up, tickets purchased and make the journey...but I gotta have Dad too :wink: .

Anyone have any advice? I really want to respect his wishes but when do I say enough is enough?

Stuggling for sure,

Cindy

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Sounds like your dad needs a "Pit Bull" type advocate to go with him to his visits. I know what I have gone through to get Jeffrey the best care that's available and it has been a series of wrestling matches. I have found that the worse the prognosis, the harder it is to get treatment that goes beyond pallative care. It comes down to a statistical insurance thing. They play the "how much are we willing to invest in you" game so it can be hard for doctors to get approvals.. but they can get them. If it were me, I would find a doctor who treats him better ASAP. He has a right to the best care out there and it doesn't sound to me like he's getting it.

Trish

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The right oncologist is something we feel strongly about. The old onc was testy, didn't like questions, actually said "look I've been an onc for 30 yrs and I know more than you" and when I called her re extreme pain (10 out of 10) on a weekend, she said "why didn't you just call the pain dr". Enter the new onc who has changed our lives. We feel totally cared for; he listens, he's a straight shooter, thorough, unhurried and he's a hugger. Our only regret is that we didn't change earlier. When things don't feel quite right, trust the gut.

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Cindy

I can't add much of anything different, but I did want to day that after Mom completed radiation (she also had chemo)I expected her to go right in for a Ctsan ( she didnt have a PET) actually i wanted her have one half way thru treatment. Docs all said to wait 6 - weeks after end of radiation to make sure that 1) its had time to do its job and 2)at the same time had enough time to get out of your body as not to show on scans as a false positive. We waited and I didnt like it, but the wait was worth the results. But we also had a great doctor to start with and felt she knew best. With your Dad not having that right now, I would be looking at another Doctor asap and getting the primary care to order the scan, if nothing else get a ctscan if he hasnt had that one. Its better than nothing or having to pay for PET scan.

Please keep us posted and I wish you and your Dad well.

Kim

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Cindy,

Keep fighting for that 2nd opinion.

Alan and I are very very lucky in the Drs we have.

I have his radiation oncologists e-mail, cell phone

and HOME phone number.

Alan's medical oncologist is very good about ordering

scans.

So the good ones are out there keep fighting. Maybe

showing your Dad some of our posts will help convince

him that 2nd opinions are a good thing and that good

caring Drs do exist.

Good luck to you and your Dad.

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Cindy,

Keep fighting for that 2nd opinion.

Alan and I are very very lucky in the Drs we have.

I have his radiation oncologists e-mail, cell phone

and HOME phone number.

Alan's medical oncologist is very good about ordering

scans.

So the good ones are out there keep fighting. Maybe

showing your Dad some of our posts will help convince

him that 2nd opinions are a good thing and that good

caring Drs do exist.

Good luck to you and your Dad.

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I just said this in another post, but it can be repeated that is how important it is..

KNOWLEDGE is POWER. A second opinion would either open up new treatment options or clinical trials, OR it will reaffirm that your dad's medical team is on the right track.

It can't hurt either way.

Prayers for your dad.

Keep us posted, and keep posting!

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