Newbie here...need advice

fringetree

Hi all,

I have been reading these boards for a while now, and I have been so comforted and impressed with all of your supportive, positive, and informed posts. I could really use some of your wise advice.

My precious father (67) was diagnosed with stage IV cc about 3 months ago. Inoperable...mets to liver, lung, pancreas. He had one half dose and one full dose of 5'-FU with oxaliplatin (which he tolerated well) when the onc told him it wasn't working, that the benefits didn't outweigh the risk, and that he was stopping treatment. There was no real discussion of us having any choice in the matter, and I was too shocked to ask any questions...big mistake.

Once the shock wore off, I tried to contact the oncologist to discuss options, including a clinical trial that I found, but he refuses to return my calls. I have been calling almost daily for THREE WEEKS with no results. As you all know, time is not our friend right now! I have medical proxy, so it is not a legal issue. His nurse has been running what I can only describe as "interfereance". It is like trying to get an audience with the Queen or something!

He finally agreed to make an appointment with me, but only if I bring my father in to the office. I find this outrageous, since I really don't think it is necessary to drag my father down there to get answers to my questions. Like, why not try a different regimen? Was he genotyped? What were his CEA levels? Were you using the scan from 5 weeks before he even started chemo to determine the tumor had grown? I also think there have been some improvements in his condition that I think would make a difference. For example, he had been bleeding and had had an uncontrolled infection for about 6 weeks before chemo, and neither was resolved before he started treatment. Of course, these got worse following chemo, and he ended up in the hospital needing a blood transfusion. But, he has not had a fever or any bleeding for over a month now. I don't know why he couldn't tell me whether that makes a difference or not over the phone?

So, I guess my question is, should I bring my father in? I am not unrealistic about what the benefits of continuing chemo would be, but I really do want to make sure we have done everything possible. At the same time, I don't want to physically exhaust my dad, upset whatever peace he has made with dying, and get his hopes up just to have this doctor tell him there is nothing more he can do....again. And, did I mention there is only one other oncologist nearby...this guys's partner! My father is not able to travel. Help? Advice please?

Buzzard

You'll get the same answers from the guys friend....
that you will get from him. I would ask for all records which by law is allowed. Take those and start calling other institutions and send them copies of his records so that they too can maybe come up with another route to take. You said that he can't travel so the phone calls and the records are the way to circumvent the traveling issue. Be sure to get the records yourself and keep copies for your own self. Then simply have other copies run off and faxed to other Drs with "ATTN. Dr ?" so they get to the right person. Each office usually has their own fax# and their own website also so that would be a good place to start for #'s and email contacts. All I know besides loading him up and taking him somewhere else. Some of these medical professionals seem to hide behind the MD stamp......Good luck to you.....Buzzard

Annabelle41415

Terrible
This situation sounds awful. I surely would get a second opinion, but I can see where you might not want to go to his partner. I'm sorry that your dad cannot travel to another doctor. I would do as Buzzard suggestion and get his records to another doctor, one that will be farther away, but one that can give you some better answers. It might be you have to take him there and just stay for awhile. I hope that things work out for you and your father.

Kim

cyndi2324

I'm sorry about your problem
I'm sorry about your problem with your dads Dr. I agree with Buzzard. I wish you the best the Dr. you have sounds like he doesn't care.
Take Care
Cyndi

fringetree

Good advice
Buzzard, I think Cyndi and Kim are correct that your advice is good. I think I will pick up the records and start sending them around for second opinions. I was considering getting an online consultation from Dana Farber, but it requires your primary care physician to act as a liason.

Thanks for the support, guys. This has been a crazy three months, and just knowing there are other people out there going through the same thing...and that there is hope for people with Stage 4 cc...has been a huge help.

karguy

I agree
I agree with buzzard,you should start looking for another doctor,the one you have sounds like he may not know what he's doing.Stage IV cc is not the death sentence that it used to be,there are several survivers,including me.They have came up with alot of improvments in the last few years.You must not give up,no matter what.We will be praying for you.

tootsie1

Wow
Good luck with this! I'm glad you're taking Buzzard's advice. That seems to be the way to go!

*hugs*
Gail

DennisR

Hi Fringe,
You didn't
Hi Fringe,
You didn't mention where you lived that there's only 1 Onco Dr in town, nor why your Dad can't travel. It doesn't sound as though your Dad is doing so poorly as to be unable to be transported to a different Hospital or Oncologist for a second opinion, especially by car, or preferrably, a van which could be rented if you don't have access to one..
It sounds to me like it's your local Onco Dr that's advising you your Dad can't travel as well as saying there's no hope for him either. Doesn't sound right to me, given that he also refuses to talk to you one on one.
I'd get copies of the medical records, put together all the info you have regarding your Dad's treatments, pre-treatment condition, current results and prognosis, and talk to other Major Hospitals that specialize in Cancer treatments. Is there an Insurance problem?
DennisR

fringetree

DennisR said:

Hi Fringe,
You didn't
Hi Fringe,
You didn't mention where you lived that there's only 1 Onco Dr in town, nor why your Dad can't travel. It doesn't sound as though your Dad is doing so poorly as to be unable to be transported to a different Hospital or Oncologist for a second opinion, especially by car, or preferrably, a van which could be rented if you don't have access to one..
It sounds to me like it's your local Onco Dr that's advising you your Dad can't travel as well as saying there's no hope for him either. Doesn't sound right to me, given that he also refuses to talk to you one on one.
I'd get copies of the medical records, put together all the info you have regarding your Dad's treatments, pre-treatment condition, current results and prognosis, and talk to other Major Hospitals that specialize in Cancer treatments. Is there an Insurance problem?
DennisR

Update....I finally just
Update....I finally just went to the appointment by myself today. They didn't kick me out! Ha! The oncologist did answer a lot of my questions, but there are still nagging doubts. For example, he only measured CEA one time (it was 61) so we can't use that as a measure of effectiveness (although I know that is not the best measure anyway). Also, the CT scan he used to determine the tumor had grown was from weeks before he started chemo, so I think it is possible it grew before he started the chemo then shrank, and that 3 weeks of chemo was not enough time to see a response anyway. His main point is that chemo just doesn't work on people with my father's poor performance status (ECOG 3).

He did say he would be willing to contact either Dana Farber or Mass General for a second opinion for us. I think I will take him up on that. Although, I doubt my dad would want to travel. We were at Boston Medical Center for a month to have stents placed in his liver and colon, and it was awful. At this point, I think my dad wouldn't want to put himself or his family through that again, especially since he thinks there is no hope. I am very torn, because I still feel like fighting, but I think he has come to some peace about his situation, and I don't want to mess with that.

Thank goodness insurance is not a problem! Bless all of you who are trying to deal with this while trying to juggle finances as well.

fringetree

fringetree said:

Update....I finally just
Update....I finally just went to the appointment by myself today. They didn't kick me out! Ha! The oncologist did answer a lot of my questions, but there are still nagging doubts. For example, he only measured CEA one time (it was 61) so we can't use that as a measure of effectiveness (although I know that is not the best measure anyway). Also, the CT scan he used to determine the tumor had grown was from weeks before he started chemo, so I think it is possible it grew before he started the chemo then shrank, and that 3 weeks of chemo was not enough time to see a response anyway. His main point is that chemo just doesn't work on people with my father's poor performance status (ECOG 3).

He did say he would be willing to contact either Dana Farber or Mass General for a second opinion for us. I think I will take him up on that. Although, I doubt my dad would want to travel. We were at Boston Medical Center for a month to have stents placed in his liver and colon, and it was awful. At this point, I think my dad wouldn't want to put himself or his family through that again, especially since he thinks there is no hope. I am very torn, because I still feel like fighting, but I think he has come to some peace about his situation, and I don't want to mess with that.

Thank goodness insurance is not a problem! Bless all of you who are trying to deal with this while trying to juggle finances as well.

Also, I picked up his
Also, I picked up his medical records, so I can try to contact other doctors. There are a few, they are just a little farther away. I think I will go with Dana Farber or Mass General.

fringetree

karguy said:

I agree
I agree with buzzard,you should start looking for another doctor,the one you have sounds like he may not know what he's doing.Stage IV cc is not the death sentence that it used to be,there are several survivers,including me.They have came up with alot of improvments in the last few years.You must not give up,no matter what.We will be praying for you.

I don't necessarily think he
I don't necessarily think he is a bad doctor (although I think I deserved more respect than to wait three weeks to have my concerns addressed)! I just think he has a different philosophy than I would prefer. I think he believes he is doing the right thing not to put my dad through more treatment, and maybe he is correct, but it just doesn't feel right to me. Especially knowing there are Stage IV survivors out there!

Thanks for the prayers and the support. It means the world to me.

fringetree

tootsie1 said:

Wow
Good luck with this! I'm glad you're taking Buzzard's advice. That seems to be the way to go!

*hugs*
Gail

Thanks, Gail
*hugs* back

Thanks, Gail
*hugs* back

Buzzard

fringetree said:

Also, I picked up his
Also, I picked up his medical records, so I can try to contact other doctors. There are a few, they are just a little farther away. I think I will go with Dana Farber or Mass General.

Simply ask your Dad...........
I have not heard from what your dad wants, only what you think he would want. Have you actually ask him face to face alone what he wants ? I really hope that this is taken the right way. I am sincerely not trying to make anything out of this but just trying to make it maybe a lot easier on all of you. What does your Dad want ? I can understand the treatment he has been through so far and the letdown and horrendous answer about nothing else being able to be done. Yeah, I can see why he doesn't want to travel, or why he doesn't want to fool with it any longer, what he needs is someone in the medical profession to give him some hope, and there are those out there that can and will if given the chance. He is 67 not 97 so the difference in quality and quantity of life is at such a larger scale than if he was 97, then maybe the want to just quit would be for me a little easier to digest, but not at 67. He seems to think that all treatment will be like these last ones, and that is not the case, and I am not saying that to make you think that I think you are making decisions for him, not at all, I understand how everyone feels about their moms and dads and how complex and perplexed we can get in doing things for them. Most of them are stubborn and I guess they have a right to be...I just want to try to find for you and yours a remedy that will console you and actually want him to get excited about getting some good medical help. You both deserve that...Hope and Love in your endeavors...and please keep us informed...I lost my father to stomach cancer when he was 63. I didn't know then what I know now or it would be a lot different...

Please do me a favor if you will...Fax one set of records to Vanderbilt- Ingram Cancer Center in Nashville Tenn and another to MD Anderson in Houston Texas...and then see what your options are, he may change his whole outlook if he sees hope, seems that he hasn't yet because of his medical team, a new look with a different medical team may brighten up his outlook on life and living with cancer......Good luck to you and your Dad......Buzzard

ninbug06

Cancer Treatment Centers of America
I'm not sure of your location, but couldn't you contact the people in the Subject w/records in tow so they could give a second opinion? My mom is 72, slightly older than your father, and I would try any type of second opinion outside of your current location. It seems a few doses would not be enough to determine cancer outcome. I wish you the best.

fringetree

Buzzard said:

Simply ask your Dad...........
I have not heard from what your dad wants, only what you think he would want. Have you actually ask him face to face alone what he wants ? I really hope that this is taken the right way. I am sincerely not trying to make anything out of this but just trying to make it maybe a lot easier on all of you. What does your Dad want ? I can understand the treatment he has been through so far and the letdown and horrendous answer about nothing else being able to be done. Yeah, I can see why he doesn't want to travel, or why he doesn't want to fool with it any longer, what he needs is someone in the medical profession to give him some hope, and there are those out there that can and will if given the chance. He is 67 not 97 so the difference in quality and quantity of life is at such a larger scale than if he was 97, then maybe the want to just quit would be for me a little easier to digest, but not at 67. He seems to think that all treatment will be like these last ones, and that is not the case, and I am not saying that to make you think that I think you are making decisions for him, not at all, I understand how everyone feels about their moms and dads and how complex and perplexed we can get in doing things for them. Most of them are stubborn and I guess they have a right to be...I just want to try to find for you and yours a remedy that will console you and actually want him to get excited about getting some good medical help. You both deserve that...Hope and Love in your endeavors...and please keep us informed...I lost my father to stomach cancer when he was 63. I didn't know then what I know now or it would be a lot different...

Please do me a favor if you will...Fax one set of records to Vanderbilt- Ingram Cancer Center in Nashville Tenn and another to MD Anderson in Houston Texas...and then see what your options are, he may change his whole outlook if he sees hope, seems that he hasn't yet because of his medical team, a new look with a different medical team may brighten up his outlook on life and living with cancer......Good luck to you and your Dad......Buzzard

Buzzard,
I am defintely not
Buzzard,

I am defintely not offended by what you are saying. You are absoultely right and not the first person to say this to me. However, you are the first person to get through to me. I think I have been trying to manage his expectations, which is not fair. He is an extremely intelligent and emotionally strong person, and up until this time we have been very open and honest with every decision. I have felt like I was doing things behind his back and it needs to end. I just didn't want to see him hurt again. He has not been stubborn at all, just devoid of hope. It's like you said, I think he just needs to get excited about getting more help. As long as the doctors gave him a sliver of hope, he was a complete trouper.

I will fax the records to VICC and MD Anderson.
Thanks for being straight, Buzzard

fringetree

ninbug06 said:

Cancer Treatment Centers of America
I'm not sure of your location, but couldn't you contact the people in the Subject w/records in tow so they could give a second opinion? My mom is 72, slightly older than your father, and I would try any type of second opinion outside of your current location. It seems a few doses would not be enough to determine cancer outcome. I wish you the best.

I will check this out, too.
I will check this out, too. Thanks!

Buzzard

fringetree said:

I will check this out, too.
I will check this out, too. Thanks!

fringetree............
Thank you for understanding what I was trying to get out. The love of a son or daughter to their Mother or Father is the ultimate affection and the want to best serve them sometimes clouds all issues on who is to choose the direction to go in these types of situations. I can feel the respect and the want from you just in speech that you have for your dad and wanting to make everything right and good for him...We all want that for our parents as our parents want for us, but they have seniority so for now, its their choice to make.....Your buddy, Buzzard

Paula G.

Help
I would take Buzzards advice. Get going to another place. No one should ever be treated like that. I would try to find someone else in a near by town if your dad can't travel to far. It might really be worth it. Paula