more waiting

[mstlyn]

Dr. Hafez called this morning to tell me "they decided" to cancel Anthonys surgery for now.

This came after Dr. Danish (anthonys oncologist) called dr. hafez (surgeon) to discuss his concerns about doing surgery with the AFP elevated @ 53.5.

With no change on the new CT scans (chest, thorax, abdomen & pelvis) they are concerned that there might be cancer elsewhere that is not being seen. I guess the idea is that with the AFP rising, why are there no changes on the scans? So ...

They want to look at the brain/MRI and get an ultrasound of the other testicle to make sure there is no cancer in these two areas that may be causing the AFP increase.

Concerns about missing cancer and not being able to do chemo right away is what they are thinking, or part of the thought.

Im angry that they made this decision without asking us first, since I feel they could have and SHOULD have, ordered the MRI/brain and US/testicle as urgent, and kept the surgery date incase those come back fine.

We have to go to U of M again tomorrow to meet with the oncologist down there, and "re-evaluate" everything.

[Scott]

You and Anthony must be so frustrated by the uncertainty. I hope things go well tomorrow. Keep us posted.

[mstlyn]

You and Anthony must be so frustrated by the uncertainty. I hope things go well tomorrow. Keep us posted.

Yes, to say the least. Anthony has been very laid back about all of this but now he is asking more questions and showing some worry. His words .. I think Im pretty much screwed.

I hope that after talking with him he isnt too worried now, but he just never says much. It is like pulling teeth to get him to open up at times.

[Already Bald]

Wow- and he's only 21... Such tough news about the about the cxld rplnd... I'm really pulling for you tomorrow.
Best,

[mstlyn]

Wow- and he's only 21... Such tough news about the about the cxld rplnd... I'm really pulling for you tomorrow.
Best,

Thanks Joe. Yeah its sad to hear words like that come from him.
I'll be sure to let everyone know what they say.

[Margaret]

I am so sorry Tammy. I know you were hoping for this surgery. I am sure they will find the source, treat it and then the surgery will be back on. Let me know if you need anything.

Margaret

[roydeste]

tammy,
I will pray for you that all goes well.

Rosy

[mstlyn]

I got them Tammy....

Einhorn was very clear in what his position was.

On one hand, I can see checking as Dr E suggested, and making sure other areas are clear. On the other this all happened after Dr D jumped in ( as he should ) minus the MRI ( Dr Einhorn never mentions an MRI.), I would wonder what Dr D said to them that made them hold off? I might ask him that someday, but you can ask Michigan tomorrow. Did he tell them something he didn't tell you?

As Dr E said, if the scans were clear , and if it could be surgically removed ( the node) then he it was go. You even brought up on your post to him the concern of Dr D regarding chemo, infections etc etc and he said " Dosages correct. He needs surgery "

Then he says again. " if head and chest ct are clear ,proceed to RPLND"

again, never mentions MRI. He said " repeat ct-scans and if clear proced to RPLND" Are they just double checking? that's cool and right.

True, Dr. Einhorn never mentioned MRI, but he did say IF the head and chest are clear, proceed with surgery. So he has to have the MRI to check the head

Lets also keep in mind that U.M did say that if they scans were clear, he would reschedule end of the week, or right after right ? I can understand the caution, but provded all information is out there, if they are clear, he needs to have the surgery.

He pretty much said this yes. His exact wording was that "IF everyone agrees with surgery" after getting an all clear on the tests .. we will then go ahead and reschedule. I'll find out today .. is he telling me that if anyone is in disagreement, he wont do it?

Being while there is some time, can you get the scans on cd? The people here have expressed very strongly that they will assist you in any way.

How do I go about doing this? Will they do it at U of M if I request it?

[mstlyn]

tammy,
I will pray for you that all goes well.

Rosy

Prayers go a long way with me. Thank you Rosy

hugs

[mstlyn]

I am so sorry Tammy. I know you were hoping for this surgery. I am sure they will find the source, treat it and then the surgery will be back on. Let me know if you need anything.

Margaret

I pray you are right Margaret, they need to find it fast. Thank you for being there, as you always are.

How are things going with Boyce right now?

Hugs

[dadmo]

tammy:
I understand the frustration and anger but I think the doctors are heading in the right direction. They certainly need to make sure that the RPLND will be a cure if not they will need to get Anthony into chemo. It's just a matter of getting the sequencing of everthing correct. Of course it would have been nice if they told you this in advance.

[mstlyn]

tammy:
I understand the frustration and anger but I think the doctors are heading in the right direction. They certainly need to make sure that the RPLND will be a cure if not they will need to get Anthony into chemo. It's just a matter of getting the sequencing of everthing correct. Of course it would have been nice if they told you this in advance.

Yes I understand the need to make sure everything is clear for surgery, but this should have already been done.
They had him at U of M on the 29th, getting his urology work up including new markers and CT scans.

They should have done the ultrasound (remaining testicle) and the head MRI at that time, since they felt it was necessary. Then they would already know these things, and we would either be in surgery on tuesday, or back in chemo (not what I hope for)

This is why some guys go through so much hell, and sadly why some of them do not make it.

We have been on this from day one when his symptoms began, and I thought I had exhausted myself and all the doctors with every question and angle imaginable, so much that the doctors were laughing at me and telling me to RELAX. So any delays are completely doctors at fault and they are risking my sons life as far as Im concerned.
Any delay that allows cancer to grow any further is inexcusable.

Thank you for being there and for your reassurance dadmo. It is much appreciated.

Hugs

[Margaret]

Tammy,

If you ask them, they should be able to get you all your scans on CD. When I was searching for a doctor, I bet I sent out 10 cd's to various hospitals.

I just feel terrible for you because you sound exhausted and I hope you are taking care of yourself. Which I know is a struggle right now because you are so anxious and worried...understandable. I still feel strongly that you are in good hands and that they WILL get Anthony cured. It looks like Robert is taking really good care of things (as always ) and I know having someone to lean on with so much knowledge is a comfort. Godspeed for this surgery and I will keep the prayers coming.

Love,

Margaret

[dadmo]

RELAX??? Your doctor's can take that relax and put it where the sun don't shine.

[Mom]

This thread gave me a major hotflash! I know how you feel, Tammy. You have been fighting for your son since his diagnosis. It is hard to believe they didn't cover all of the bases on the 29th. You are at the mercy of these doctors. They will get those scans done, find that damn monster, and wipe it out. Hang in there. Dianne