2nd rounds of treatment and lost in the woods

[jd]

Well, it is like where do I start. My dad has stage 4 lung cancer, met to brain. INitial brain tumor 1.5 cm He was treated at Mayo in Oct. with resection to tumor to pituatary, then to U of CHciago for Radiation (after much fighting with the doctor) to the pit region and the standard chemo. LUng Tumor said to be stable, brain tumor gone. Got off treatment for a vacation (around april) went back for a follow up visit about 2 weeks ago, not surprising, we got regrowth in lung. My sister and I argued with the dct to do an MRI of the head. Doctor resisted but then relented. NO SURPRISE TO me and my sister, 2 new growths in the brain, <1cm. a piece. Dctr at U of Chicago says "In my oppinion" brain tumors that are not causing symptoms are insignficant and do not need to be treated that the he needs to be on chemo first and wait until you have symptoms before you treat the brain tumors. Wants to put dad on chemo study (one that supposeofly crosses the blood brain barrier). Called Mayo Clinic in Rochester, said that was wrong, that you treat brain tumors ALWAYS when then are small. LIke with Gamma Knife, or whole brain, etc. or even direct surgury but unless you are in REALLLY bad shape you treat the brain tumor first then the lung disease. Dad is in good shape has gained weight, looks grand. So, my dad and sister ran away on a trip not to deal with it. Got Mayo clinic to get us an appt within a week to help us sort it out. Dad wanted me to call and reschedule because timing was inconvient with his work and dentist appt. Of course, dad and sister think I am overreacting and that this isn't life or death when the MAYO told me so.

So, dad isn't going to show to the appt at the Mayo Clinic. So, I had to cancel the appts. Got the radiation dctr involved at the U of Chicago to relook at dad and see if he is or is not having brain sysmptoms.

AT TOTAL LOSS............The Mayo said this study would do NOTHING for my dad and the wasted time would make the brain tumors worse. U of Chicago dctr is a moron. He HATES the Mayo. When I mention their name he gets made......

Help, Help Help

[TAnn]

jd,

Welcome to the boards. You have come to the right place and will get lots of help and support.

It sounds like you are in a very tough spot. Your dad is in denial right now. The best way to deal with this disease is through education. You are on the right path. The Mayo clinic sounds like they are definately on your father's side. The other doc just doesn't want to send his patients to the competition. Sounds like he's in it for the money, ego.....

I hope you can convince your dad to see the docs at the Mayo clinic. The other doctor does NOT have your dad's best interest in mind. He needs to get treatment as soon as possible. Not treating brain mets because of no symptoms sounds WRONG to me......

Good luck with your dad, and we are here for you

TAnn

[rwoodburn]

jd,

I am absolutely puzzled by the U of C doc's recommendation. I think that his recommendations are way, way off. Brain mets are a potentially lethal situation if not addressed. The good news is that if diagnosed when small ( his situation thanks to you) they can be eradicated with gamma knife radiosurgery. He absolutely needs to have these tumors taken care of. Please call if you need more advice. I feel bad that you are getting this kind of medical advice.

I still am somewhat amazed that you received this recommendation. Were the tumor really in the brain?

Robert Woodburn M.D.

[karenl]

Jd

I too have heard conflicting advice about brain mets, and wondered why my Mum has not had an MRI to determine whether she has any. The info I have heard is basically that they aren't treated until symptomatic (similar to bone mets), so no need to do the investigation unless there are symptoms. That being said, I find it odd that they wouldn't treat them knowing that they are there, as in your father's case.

I wish you the best in your search for answers - there is nothing worse than conflicting advice from medical professionals!

Also, Robert, it is nice to know there is a doctor in the house! Can never have too many medical opinions! Was just wondering about your reason for being here - are you a cancer patient or family member, or just a concerned citizen??

Kind regards

Karen

[Nushka]

I would insist that your dad see the folks at Mayo. I agree with Robert, this is the wrong advice you are getting. If they find brain mets in me I want them treated asap. If my oncologist trys to talk me out of it I will have to find a new doc. Thank you Robert for being here. I appreciate your help.

Nina

[Guest bean_si (Not Active)]

Go with the Mayo clinic. That other doctor does not sound as though HIS brain is in working order. My prayers for the tremendous stress you are enduring and for your family.

Cat

[jd]

Robet, et all:

Yes, the tumors are regrowing in the brain and in the lung. The tumor in the pit region did not come back. These are in a new area of the brain. I thnk they are surface ones < 1 cm each. The one that "killed the pituatary and hurt his vision" was 1.5 cm.

Anyway, I tried to tell the U of chicago that the only treatment that has "worked" so far was the radiation, so WHY THE HECK aren't we doing in again in the brain first then mess with chemo. He just is so insistant that you don't have to treat brain mets until you have symptoms where as Mayo says "Umm, if you have symptoms you have brain damage and probably can't correct that. SO, better to deal with it before that UNLESS you are REALLY REALLY sick with the lung mass."

The U of chicago person wants to put dad in the following study:

" A phase 2 trial of temolozomide and Irionotecan as a second line treatment of advanced nonsmall cell lung cancer." Protocol 11461A U of Chc thinks this will help the brain mets....... I guess it is a small trial with only like 40+ people. Went to National Cancer Institute and it isn't listed when I checked on it. .....wierd because all the other trials offered to us were there.........another reason I don't like this study.

I don't know what to do......I had to cancel the appts because he wouldn't show and couldn't take that chance from someone else and I couldn't reschedule them becuause they were pulled out of the sky appts by the grace of God. (they got us the appts at Mayo within a week) I think my dad want to start the study and then go to Mayo to see what they say. I also couldn't reschedule because I fear by then it will be to late by the time we see them, get their idea, go home, process the info, try to find a new doctor, etc.....time is a precious thing.

UGH! I think I may get a brain tumor myself from the stress. I just don't know what to do.....

[Bill]

Robet, et all:

Yes, the tumors are regrowing in the brain and in the lung. The tumor in the pit region did not come back. These are in a new area of the brain. I thnk they are surface ones < 1 cm each. The one that "killed the pituatary and hurt his vision" was 1.5 cm.

Anyway, I tried to tell the U of chicago that the only treatment that has "worked" so far was the radiation, so WHY THE HECK aren't we doing in again in the brain first then mess with chemo. He just is so insistant that you don't have to treat brain mets until you have symptoms where as Mayo says "Umm, if you have symptoms you have brain damage and probably can't correct that. SO, better to deal with it before that UNLESS you are REALLY REALLY sick with the lung mass."

/////////////////////

JD :

My wife has 4 large tumors in her brain ( the RAD onc called them large - no exact measurements given ). These tumors have either shrunk or stayed the same size since completing her whole brain radiation. But, nevertheless, all 4 tumors are still present in her brain which is unsettling. All 3 of her doctors ( RAD onc, med onc, neurosurgeon ) state that until she produces symptoms they want to leave these brain tumors alone. No radiosurgery, no nothing. Not clear what they will do if these tumors get bigger. As some of you may know, in most cases chemo ( delivered into the arm or central line ) has a very limited effect ( if any ) on brain and spinal cord tumors as most chemo drugs either don't cross the BBB or do so poorly.

Best of luck to you on resolving this issue.

[mhutch1366]

jd,

I feel for you, truly.

Your dad cannot be forced to take treatments. You AND YOUR SISTER need to sit him down (or you sit them both down) and tell him he needs to choose to get treatment or take the "path less travelled". Cancer will not go away. And yes, it's scary. But he needs to decide, actively not by default.

I hope after you've turned yourself inside and out getting him appointments he will decide to go.

You take care of yourself, jd, there is only so much you can do if he keeps running from his disease. Let yourself off the hook. It is his decision, after all, and if he decides to not deal with it, you will have to respect that, as hard as that is.

Know you can lean on us for strength and support.

XOXOXOXOX

Prayers always,

MaryAnn

[Elaine]

Not to mess things up, but has your dad already had WBR? If so, I do think they tend to leave whatever is left alone until it causes symptoms unless there is one-- or maybe two small ones that can be treated with gamma knife--usually they only like to do WBR once but will do it twice if it can be shown to be of benefit. But WBR is usually only done a second time as a last resort effort as it can have some bad side effects.

This is just info I have learned from being on this site and reading the many posts of others.

Hope you get things worked out.

love and fortitude

elaine

[john]

I always read that most of the times, Drs treat the brain mets first.

I am not a Dr, but I have read Temodar may help with brain mets.

There are also drugs called radiosensitizers, which allow less radiation to be used.

I would be wary of any Dr that is not secure enough with themseleves and bashes another institution. I don't think the U of C Dr seem professional. Just my opinion

Good luck.

[jd]

No he has not had Whole Brain Radiation (WBR) yet. So, from what Mayo says that or Gamma Knife to the mets are still an option.

He had localized radiation to the pit region. That tumor was 1.5 cm and had crushed the pituatary and was pressing on the optic nerve (?) causing vision loss (25%) in the both eyes, lower quandrant. The MRI is clean in that region and there doesn't appear to be back in that area.

Here is the exact locations of the two NEW brain mets. (I probbaly will spell some of this wrong, so hopefully you will get the point) I made the dr at Chicago read it to me off the rad. report.

Tumor 1

Inferior aspect of the right tantanonum <1 cm

Tumor 2

Punctate focus of enhancment (?) along the right cerebellum, again < 1cm

He has another appt with the radiologist dctr tommarrow that I demanded on Wds for. Hopefully, the other dctr will revisit the chemo study plan. I have to emphasise that overal my dad's health is GOOD. He has a cough, due to the lung tumor near his wind pipe. But besides that he is able to walk around fine, can work, looks good, has gained weight. If you didn't know about the lung tumor or brain mets, you would think he has a "smokers cough".

Can you belive the doctor at U of Chicago actually said he was "insulted that we didn't accept fully his recomendation and had questions regarding his plan". Oh, then he tried to back track and say he was joking....NOT FUNNY! What normal person doesn't get a 2nd oppinion when it is the person's life and or quality of life at stake. WHO THE HECK SAYS THAT!

I am so frustrated right now. I also think U of Chicago is the worst hospital EVER!

[SJAS]

Wow JD you're not "lost in the woods" - you're in a total nightmare with that doctor. Steve's brain mets were not treated first, although his onc. said that brain mets usually are treated first, but his systemic was too critical. So he had chemo (see profile) first and as soon as it was ended, was referred for WBR. We opted to look into Gamma Knife and the tumor committee wanted a triple dose MRI. In the ensuing month, all 4 of Steve's brain mets disappeared, so Gamma Knife was not scheduled. His onc. wanted WBR anyway - not only did he have no symptoms, at that time he had no identifiable tumors. We refused. However, a little more than a month later, he had 15 lesions on the brain. We rushed into WBR. Obviously, doing nothing is risky business. Good luck.

[stand4hope]

Wow, JD, you are going through a very stressful time. Mary Ann gave you very, very good advice. Do all that you can do to educate yourself and then your dad. Then you just have to let him make the decisions he wants to make. It won't do us any good to beat up on the doctor (although I would like to) because it sounds like he has made up his mind and really thinks he is right, even though the most advanced treatment techniques advise otherwise. If at all possible, I would just try to get him to another doctor or to the Mayo Clinic as soon as possible. If he just refuses, then you have to know in your heart that you did everything that you could, and let your dad lead.

That's the best advice I've got, but I sure am pulling for you, and for your dad. Take deep breaths, do all that you can do, and then try to relax.

Welcome to our family here at LCSC. You've come to the right place for support. Please keep us posted.

God bless you,

Peggy

[jean44]

JD,

So sorry to hear about your Dad. I lost my Dad Oct. 2003 after a fourteen month battle that started out as lung cancer which went to his liver and brain. When they first found it on his brain he had five tumors about the size of a pin head. When we lost him they had multiplied to fifteen. Once the brain tumors were found they were the concern. All treatments stopped on his lungs and liver as to concentrate on the brain tumors. They did whole brain radiation and when that didn't work they did a procedure called stereotactic radiation but, it did not work on the tumors either. Before we lost Dad the tumors had started to bleed and the seizures started. From the experiences we had with Dad I do believe the brain tumors need to be addressed. Good luck and God Bless.

Jean

[elnodel]

How terrible for you to have to go through all this without the cooperation of either your Dad or your sister. Keep on trying but if your dad won't budge, there isn't much you can do -- you've done your best....

Have you gotten either your father or your sister online on this board yet? They might change their minds if you show them some of the messages and stories here.

Ellen

[SDianneB]

"Can you belive the doctor at U of Chicago actually said he was "insulted that we didn't accept fully his recomendation and had questions regarding his plan". Oh, then he tried to back track and say he was joking....NOT FUNNY! What normal person doesn't get a 2nd oppinion when it is the person's life and or quality of life at stake. WHO THE HECK SAYS THAT!"

Unfortunately, yes, I can believe it. I also recognize it as a definite clue that a 2nd opinion MUST be sought. I think if it were me, I'd get away from a doctor who said that REALLY fast, no matter what. Part of what I don't like (personally) about my Oncologist is his incredible ego, but he hasn't crossed that line with me -- not yet anyway. Professionally, I know he is really, really competent, so I'm still with him for now. If I ever heard him say anything like that, I'd be outta there in a minute.

Sheesh.

Dianne

[jd]

Thought I would update. Dad didn't go to Mayo. Went to the Appt I got him at U of Chicago. Radiation Onc. changed protocol from other Onc. and now they are doing Gamma Knife to head and radiation to lung/throat area...then see what happens next. Not doing WBR, reserving that for future met to brain.....so, i guess in the end it worked out. But wouldn't have if I hadn't fought it tooth and nail.....sister is hating me again and dad thinks I suck. Why am I helping again?????? Probably the last time I get involved, sick to death of being called terrible horrible names when they ask me to help and then I help and then when I do what they ask and I the one at fault cause I am the bearer of the bad news..

Thanks for all your kind advice. If I hadn't heard it again that the radiation was right and the chemo was wrong for the mets to the brain, I would have given up. Thanks special to Dr. W. I forward your message to my dad and I think that tipped the scale!! I am just glad the right thing is getting done.

PS:

Not looking forward to hearing about him doing the radiation to lung mass/esophogus area. Sideeffects don't sound pleasant but if it buys a little more time I guess that is okay......don't frear the Gamma Knife cause that doesn't sound as bad from what I read....

Thanks again all and God Bless each and every one of you! Especially those that are ill themselves but care enough to try to help other people. May God take extra care of you.