VERY CONFUSED

[Guest SandyM]

My dad was diagnosed with limited SCLC in Sept/ 03. He had radiation and chemo for about 4 months. In Jan/ 04 the doc said they could hardly see the tumor They also said they could see a tiny little speck on his adrenal gland but they would just monitor him. So, for all of 2004 and until this month, he has been going in every few months and being told he's doing great, everything still looks good. I didn't realize though that everytime he went in all they were doing was taking chest x-rays. The last CT scan was last Nov. He started having really bad stomach pains a couple of weeks ago. I took him to emerg and the doctor ordered an x-ray. He walks in the room and tells my dad that he is no longer in remission and that he has a huge mass in his stomach. 3 by 4 centimeters. He faxed everything over to the Cross Cancer clinic to my dad's Oncologist. A few days later we go in and the oncologist basically tells my dad that yes, it's back, it's on his adrenal gland and at this point he's now considered incurable. He said that chemo now is second line (,Carbo, VP-16) it never works as good and really all we do now is hope for pain control because it's not going to get rid of it completely. He gave my dad percocet and sent him on his way. His first rounds of chemo weren't scheduled for 2 weeks! My brother called the doctor and asked why they were waiting so long? He said they could start this week but it wouldn't make a huge difference. He also asked why they didn't do any CT- scans since Nov and the doctor said they don't unless the patient is having symptoms. He said they just do the x-rays and the CT-scans they do every six months. BTW, the tumor in his chest is still pretty much gone. The doctor even went so far as to say, my dad did much better than they thought he would the first go around.

Is it because my dad is in his 70's or maybe because the tumor is big? Is it true that second line isn't as effective? He told my brother that if this doesn't work my dad is looking at between 1-3 months and even if it does, all he's probably looking at is 5-6. He said all we are doing the chemo for is palliative at this point. Is this one of those things where the family is not ready to hear the truth? It just seems like the doctor has given up and he says it's not that, but we have to be realistic.

Am I being unreasonable to be expecting more?

Thanks

Sandy M.

[Frank Lamb]

Sandy,small cell although agressive is also usually very responsive to treatments.I would want to start as soon as a game plan is available.

Good luck with treatments.

[daggiesmom]

Sorry to hear you Dad's story. I believe that the standard of care is follow up CT scans, not x-rays, every three months for the first 3 years. That is what I currently am having (I have limited sclc - am a 3 year survivor). I would strongly suggest you get another oncologist's opinion as soon as possible. Please let us know how he's doing.

Joanie

[Remembering Dave]

This makes me mad. FIND ANOTHER ONCOLOGIST, AND DO IT QUICK. First of all, with SCLC, he should have had CT scans every three months, especially since they did see a small speck. A small spot is a small spot - it's not nothing.

Another thing - ask about the chemo topotecan. My husband Dave is on his THIRD bout of SCLC, and he's on topotecan, and so is Addie from this board (it's her second go 'round) and it seems to be working.

This oncologist is not interested in helping your dad fight. SCLC does respond very well to chemo. this can be treated. it can be more than pallative. and being in your '70's is not old! certainly not old enough to write someone off! no way!

I just don't think this oncologist has served your father very well at all.

Karen

[SDianneB]

I have to echo what the others have said. I've changed oncologists once already, and may do so again if I think I need to. Like Katie said -- you want a doctor who will fight for you as a patient.

My follow-up visits got to be a chest x-ray and a brush off by a nurse practitioner, and I put that to a stop immediately -- mostly because of what I've learned from people on this board, and from my personal research into what is usual and reasonable follow up care.

The point is, IMO, to get at least a 2nd opinion. And if at any point you and/or your dad have reservations, speak up! They are being paid a LOT of money to take care of you, and if they aren't doing that, then you can take your money elsewhere at any time.

My very best to you. I hope you keep us informed.

Di

[DebsSky]

Hi Sandy:

I am sending you a PM. My mother had treatment at the Cross too and she is doing great. Her oncologist at the Cross told her that if she does not relapse within three months that he could reuse the same chemo. He also mentioned Topotecan that could be used. I sent you his name, see if you can see him.

All the best,

Deb

BTW, I have found some of the doctors at the Cross to be @sses!!!

[Guest SandyM]

Thanks so much for the words of encouragement. I got on the phone an called the patient advocate department and talked to a VERY nice woman there. She wouldn't come right out and say anything, but I could tell by what she was saying that she's VERY concerned. My dad complained twice that his back hurt and both times the doctor brushed it off. The doctor said that they could see a "nodule " not a speck as I said in my first post. That was way back in Nov. WHY didn't they follow up on that?? The woman I spoke to was very concerned about that too.

I have to get my dad to sign a release form saying that the doctors or anyone treating my dad can discuss his medical situation with us. Until then the woman I spoke to said her hands are tied. The oncologist has already told my brother things so I don't know why they all of the sudden need that signed, but we'll get it. I get the feeling that this doctor just doesn't care. I even asked my dad last time he went in what he said about the pain he was having and my dad said, " Oh, I told him, but he just didn't seem to interested, so I guess it's nothing to worry about." If they had done a CT scan months ago they would have caught this when it first started to change.

The worst part is, we don't know just how far it's gone yet. He isn't scheduled for his CT scan until next week. For all we know, it could be everywhere by now. I am so mad. I feel like they dropped the ball on my dad and yet they keep saying it's standard to only do CT scans every six months. Isn't there an official guideline they have to follow?

Thanks everyone. I will keep you posted as to what happens next week.

Sandy M.

[Addie]

Sandy...

I haven't even read the other replies....just your orig. post and I had to jump in to say this....RUN TO A NEW ONCOLOGIST! Insist your dad get another opinion.

In a nutshell...I too was limited. I got CT scans every 3 mos. REGARDLESS of whether I had symptoms (which I did not). Had a CLEAN CT in January of this year and a week later, my stomach was upset.

Took 5 weeks to track it down (because nobody thought it was the cancer having JUST had a clean scan....and that included me AND my doctors)....but it WAS cancer. Took an MRI to find it....in my liver and my pancreas.

That was in February. My FIRST line chemo had been carbo and VP-l6.....so this time I'm on Topotecan (pronounced Topo-TEE-can) and I had a 4 cm. liver tumor which is now HALF that size after just three cycles of chemo!! Also....my pancreas is CLEAN...normal.

There ARE chemo drugs for second line treatment that work and work well...but first you need a doctor who isn't going to tell you there is little to be done and that pain control is all he can offer!!

Keep asking questions...get another opinion...and only talk to those who offer some hope, because at this point, there is no reason for doom and gloom!

A 3 X 4 cm tumor isn't tiny...but neither is it HUGE. If a 4 cm tumor in my liver has shrunk to half...then the right chemo can do the same for your dad.

Please keep coming back and keep us posted....but mostly, DON'T GIVE UP and don't let dad give up either. Find a doctor who will work WITH you, fight with you, listen to you and not (due to age or any other feeble reason) tell you all you can hope for is pain relief.

Oy...this almost makes me MAD that a doctor would give up so easily.

The doctor even went so far as to say, my dad did much better than they thought he would the first go around.

And yet NOW, the doc wants to give up on him? If Dad did that well the first time...he can do that well again!!

Find a new onc!!

[Botley]

Dear Sandy,

You need a strong bright oncologist with a positive outlook for this battle. Run not walk to a new Dr. in my opinion there is always hope and it is worth fighting -- some people do make it! Your Dad's needs you and your support and you need the guidance of a Dr. who is willing to go whatever distance you are all comfortable with. It seems as though they were very lax in his follow up care. CT's are very standard even if the patient isn't symptomatic especially with Small Cell. Good Luck to you, your Father, and Family!

Take Good Care,

Botley & Mother

[gail p-m]

Another oncologist, second opinion.... Please do it as soon as possible.

Gail p-m

[Remembering Dave]

I think everybody here has pretty much summed up my thoughts about your situation. I have SCLC Extensive now and am fighting harder than ever to beat this. I would definitely at least have a good sit down with this Onc. In my opinion an Onc saying he would not scan unless there are symptoms is total bull kuku. SCLC is very fast growing and usually does not get caught early, BECAUSE THERE ARE NO SYMPTOMS (or very little symptoms that could be anything). I have been on 3 different chemo regimes and my cancer has responded very well to all 3. Never say never and get him to another Onc as soon as possible is my final opinion I must say that I have been very lucky with all my Doc.s having a positive attitude. Also, if possible, make sure he has someone at all the appt.s to help interpret what the Onc. is saying. Someone who is not afraid to ask the Onc. questions and act as an advocat. Don't hesitate to ask questions and get up in the Onc.'s face if you do not agree with something. My wife is great at that. The patient has to have a positive attitude and must not ever question if they/we are going to beat this. I can't imagine not having confidence in my Onc. Hope my chemo and pain pill induced rambling has helped a little. Feel free to PM me or my wife at any time. My prayers will be you, your Dad and all your family as you go this.

Please come back and let us know how everything is going.

David C

[paddy]

Hi Sandy, Yes, I agree with all the others. Get to another onc. as soon as you possibly can. The oncologist you Dad is going to now should be ashamed of himself! Paddy

[jcawork]

He needs a brain MRI asap in addition to the Ct scan. A PET wouldnt hurt either.

Jen

[Fay]

Hi,

My Mom's experiences with the Canadian health care system were different from some of our American counterparts. Although, we don't pay for many of the treatments and tests as our south of the border friends do, I found our "wait times to treatment" were significantly longer. Also, the doctors seemed less eager to do tests unless symptoms dicated a strong reason. Often I had to really push the Onc, and really highlight the symptoms in order to get tests done. I agree with everyone else that I'd persue another opinion and find a doctor who is willing to fight.

Faylene

[Maryanne]

I can't believe what Iam reading. Chest Xray with SCLC... what...No wonder they did not catch it.

I would run not walk to another Oncologist for a 2nd opinion.

Maybe someone who lives in your area can recommend one.

That is tragic to me. Maybe I am wrong, but I am not comfortable with that at all.

Maryanne

[SharKats]

I think it's time for this particular oncologist to hang up his shingle and retire. To have such a defeatest attitude with a patient is just wrong! I mean how discouraging to hear those statements from an oncologist.

Run don't walk to another doctor sounds like EXCELLENT advice to me. Gosh, it makes me so angry to hear about incidents like this........

Wishing your Dad all the best - I will remember him in my prayers.

[Cindy RN]

I am now in my 4th yr!!!

I had a relapse and did chemo-same as you mentioned-I have been off chemo since around Aug 2003. I am doing well. DO NOT LET THEM PUT YOU ALL OFF!!! sclc grows too fast to put it off. Time to look for another DR!!

Cindy