They have taken away precious time from Alan

17 years ago

I am so furious and confused. Alan had a stroke yesterday and was rushed to a hospital in Palm Springs. He's now in ICU there. He had an MRI done and they found the same tumor that the first hospital said they removed! That was a few months ago when his brain swelled and he almost died. The doctors there bascially sent him home with 3-6 months to live. His doctor, from Hospital #2(a well known one), from his cancer 5 years ago took over and said he wanted to try agressive treatments and had high hopes for him. He put Alan in for a few days for tests and said that the first hospital did a great job removing the tumor. Then started to back off of the agressive treatments he wanted to do....got very lax in his communication in the last month. He found more cancer in Alan but said that medi-cal wouldn't cover most of the treatments for it. He was to start chemo tomorrow. Now that he has had the stroke obviously that won't happen. Well....this hospital (#3) he's now in, in Palm Springs did an MRI and said the tumor is still there and they are demanding the records from Hospital #1 and hospital #2 to see what is going on. This doctor is furious that they didn't remove it and said they did and is quite shocked that hospital #2 didn't see it. They have a cancer treatment center there too and are willing to treat him because he is in the system and they will eventually get there money from medi-cal...no problem. He also said he can't understand why hospital #2 didn't treat him asap....again they would eventually have gotten there money from medi-cal, same as any hospital. They are doing surgery tomorrow and he said it's going to be a bad surgery because the tumor is really deep in his brain but it has to be removed, no question about it. I am terrified for him after all of this. Who can you trust??? This whole thing from the beginning has been a web of confusion, lot's of ups and downs. I so hope this new doctor knows what he's doing...sounds confident they say, so hoping all goes well. How can this happen though?? I am baffled at all of this. I can maybe...MAYBE, see one hospital getting it wrong but not two! Please pray once again for my nephew, this is so scary. My head is spinning from all of this!!

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Comments (36)

caroline94535
17 years ago
(((((Praying for Alan and your entire family)))))
grammahony
17 years ago
Oh how sad. Is it possible that the tumor grew back? I pray the surgery tomorrow is successful.
Leslie
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User
17 years ago
My father had a brain tumor and it was "removed" - it was glioblastoma stage 4. However, and this is a big however, our family was told at the time that a tumor in the brain is very hard to remove completely. And the reason for that is that they don't want to take more than the tumor because then that takes away other valuable brain cells and they risk leaving the person to be a 'vegetable'. So, they try to get it the best they can. Often times, tumor cells stay in the head and that's the reason for radiation/chemo.

Who can you trust? Has your family researched any of the treatment centers your nephew has seen? I'd get to the best cancer place in your area.
caflowerluver
17 years ago
Wishing you the best. I hope the surgery is successful. It goes to show what my DH has always said, don't trust doctors.
Clare
grammahony
17 years ago
I'd like to add something else. My sister just had a lumpectomy for the 2nd time (other breast). This time it was caught very early and is called breast calcification. Meaning it's tiny specks of it in a certain area. That was a month ago. On the 7th of this month, she had to go back and have more tissue removed from the same area. The Dr. wasn't satisfied with the margins. So this time the results came back clear. TTL. But, and this is what I was going to add, in her conversations with the Dr. and who she wants to do the surgery, or whatever, she ask the Dr. "who would you want for your wife?" That's who she goes with.
nodakgal
17 years ago
I can't remember how long ago the brain tumor was removed? I know DSIL Steve's cancer was pretty agressive. He had3 or 4 brain operations and fluid drainage proceedures. Are they sure the tumor cavity did't fill with fluid Vikki? Steve had surgery twice to drain fluid alone. His tumor grew back too because they could never get all the "fingers" leading off from it without doing more damage than good. But I think it takes awhile for it to grow back to where it was.

I'm praying for Alan!
I can't believe all that he has gone through, the poor guy! Now a stroke too, good lord no one should have to endure this let alone all the goof ups!!!
foggyj
17 years ago
Wow, this is mind boggling. It seems so unlikely that a hospital/Dr., would be so wrong about a major situation as this. If they couldn't help, they should have transferred him, or something!
Really hoping there's a good outcome for you and the family.
Jodi_SoCal
17 years ago
Poor Alan. I know he really didn't want to deal with Cancer again after the first time and now all of this. How is he holding up Vikki?

Jodi-
heather_on
17 years ago
Special prayers to Alan and all of your family.
monica_pa Grieves
17 years ago
Cancer cells can be too small to show up and with an aggressive cancer, can grow very quickly.

Sounds like Alan is at Eisenhower Medical center?
It's a very good hospital.

Metastasized cancer is a very confusing situation. Cancer has no orderly progression, no predictables.
gwanny2three
Original Author
17 years ago
No my nephew..Alan's dad asked the doctor if it could have grown back and he said no. It's only been a few months Connie since his brain swelled up and put him in the hospital the first time. He was taken by helicopter from their little ER to this first hospital then. He's out of it right now of course, but before the strok he was giving up again...didn't want to start the chemo. Then after a few days of that they convinced him to go through with it. Then this....hopefully they can treat all the cancer after this tumor is gone.
deborah_ps
17 years ago
Gwanny,
I'm in Palm Springs...is he at Desert Regional or Eisenhower?
Do you happen to know the oncologists name?
How did he end up here?
I know you're feeling frantic, and I'm really sorry this whole experience is so convoluted. Keep the faith, I'm living proof that miracles do happen.
gwanny2three
Original Author
17 years ago
deborah_ps I'm not sure what hospital he's in now..my sister didn't know the name of it. I do know that Eisnehower is a fantastic one...my mom was in there for her heart problem once and my sister's in-laws went there quite often. I am hoping it is that one. I'll find out more tonight hopefully. I don't know the doctors name either..sorry. I'm 2 hours from them so I only get info fom my niece and sister who live out that way.
debnfla8b
17 years ago
I'm so very sorry.

Deb
maryanntx
17 years ago
How is Alan doing since his stroke? It's just all so sad.
gwanny2three
Original Author
17 years ago
They said he is pretty much out of it because of the meds they are keeping him on. He is responsive at times. They did say though that it was good that he didn't have his head closed up because it gave him some faster relief from the build up this time. So I guess that was a blessing.
wildchild
17 years ago
I'm so sorry. Wishing Alan and family well.
molly109
17 years ago
I am so, so sorry. I have had lots of cancer in
my family, and I know the pain and devastation it
can cause. There is no excuse for being told the
tumor was removed if it wasn't.

Sending my best thoughts and feelings for you and
your family. Just such a shame that such a young
man has to go through any of this.

Hugs.
jayokie
17 years ago
Prayers for Alan & the drs. (( for the family )), too.
deemarie5500
17 years ago
Sending out good wishes for Alan and the entire family.
Dee
mariend
17 years ago
Sending good thought for Alan and the family. Cancer is such a unknown virus that no matter who does what, there are side issues. If the first/second hospital is in error, there is people you can contact especially in CA that will clarify the issue. Also, because CA is in a budget crises, many medical places are not as accepting patients as they use to, along with many Dr's. No this is not right, but it is happening.
Alan is on the prayer list.
lindyluwho
17 years ago
I'm so very sorry. This kind of thing just should not happen. I hope Alan is resting comfortably and this new doctor can give your family some answers.

Linda
matti5
17 years ago
I had a brain tumor removed in 1998. I too went through some of the frustration and devestation that Alan has been experiencing. Please get copies of all his MRI's/CT scans.

Did he have an MRI or CT scan immediately after the tumor removal?

I am so sorry all this happening, my thoughts and prayers are with Alan, you and your family. I'll light a special healing candle for him.

Hugs, Cheryl
nicki_in_niles
17 years ago
I'm so sorry to hear this. Alan will be in my thoughts tomorrow.
lindaohnowga
17 years ago
Following along and don't always get the chance to post, but know that Alan is in my prayers, as well as for the doctor who is now treating him.
Marcia Thornley
17 years ago
My Goodness, I can't even imagine the stress you are feeling. Please know I am thinking of you and praying for good things to happen.
gwanny2three
Original Author
17 years ago
Thanks again for the contined prayers. Matti5 I'm not sure what he had done after the first "removal". I will let them know if they don't by now to get copies of everything if they can. They may need to prove something someday. The neglect is terrible.
country_bumpkin_al
17 years ago
There is no excuse for all this confusion!! Somebody's head (or license) needs to ROLL!

I'm sending Prayers for Alan and all his Family!!
tami_ohio
17 years ago
I'll keep the prayers coming.

Tami
creekgirl
17 years ago
Is there any possibility that they could do the cyberknife treatment on Alan? Our hospital in SC has it now & the head of radiology went out to CA. to learn how to operate the machine about a year ago.

I don't know what hospitals have the cyberknife but it is radiation beams controlled by a robotic arm that target the tumor & zap it. There is no cutting of the skull & the procedure takes from 30-90 minutes.

You can google 'cyberknife radiosurgery' & get more info on it.

I had to have a CT scan & an MRI of my brain and also see a neurosurgeon before they would tell me that I was a candidate for it. Hopefully they can do it in the next 10 days or so. I am very hopeful that they will kill my brain mets.

I will pray that Alan can come through this & continue to fight the battle & be a winner.
clubm
17 years ago
This is so sad. Sending prayers for Alan.good luck!!
donna37
17 years ago
Keeping Alan and family in my thoughts and prayers.
grittymitts
17 years ago
May Angels surround Alan as he goes through this new crisis.

Suzi
wildchild
17 years ago
Gwanny2three, I don't know if you are the type of person who is empowered by knowledge or one who would rather not delve into the details.

The link below is the best I've found to explain brain tumors in laymen terms. There are also links on the site for families dealing with this horrble crisis.

#8 addresses the issue of recurring brain tumors. Unfortunately they do recur and no doctor can predict whether they will or not. Either the doctor misspoke or was misunderstood in the emotional nature of the moment.

Again I am so sorry Alan is going through this. He's in my thoughts for successful treatment and a speedy complete recovery.

Here is a link that might be useful: Brain Tumors
kittiemom
17 years ago
I'm very sorry to hear this. Sending prayers & good thoughts to Alan & the rest of the family.
grinch_gut
17 years ago
Sad scary and so confusing for all involved...Hugs thoughts and prayers for everyone...Stacy

They have taken away precious time from Alan

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