symptoms of brain tumors?

[Russell's Mom]

hang on

Hi Tammy,
Have been reading your posts, have been in a whirl wind myself. If you make a move, don't "offer" to pay. Just let it work it's way through if it come up. I believe every hospital has charity money and they have to document charitable funds so they want to give....at least sometimes. Don't ask me the logic.
I believe your concerns are valid. They are also very confusing. I am glad for people like Dorree. She has to be working with someone, because she could not place that order without a physician. Do you know who is supporting her? That might be a direction to go for someone with an undersatnding ear. When I read the quote from the onc MD "that his markers will not go up," I had a huge reaction. Maybe he is educated and experienced and the best in the world, but that kind of attitude and statement usually comes from the mouth of person who carries personal ego infront of compassion. Very often, they are excellent at outcomes and you don't have a thing to worry about, but it is the same arrogant attitude that got us into the situation that we are in. Should have been simple, went to advanced. I can hear in your words the confusion and stress. it will be impossible for you to diagnose this. It is difficult even for the MDs. Your son will be sensing your stress right now and he needs a Mom. If you are not his Mom, no one else can be. I am not saying to let go or slow down, just fire your arrow to the people that will be there for you. Find your balance so your son can feel secure. This is advice giving, but there were times people looked me in the eye and I am thank-ful for the efforts that helped me get my train back on the track. The stress is huge....distance runners, bikers, pace themselves! Hang on, we are with you!!!!!!! Russell's Mom, Sharon

[mstlyn]

Tammy, is Anthony's RPLND surgery scheduled, and if so, how soon? If the mass is teratoma, chemotherapy wouldn't have had much effect on it, but surgery should be curative.

Scott, no it has not been scheduled yet but when I spoke with Dorrie on friday she said everything had been faxed to U of M, and they were working on it.

I know the oncologist said they wait for 6 weeks to recover from chemo.


Anthonys last week of chemo was April 2 through April 6. So it has been 3 weeks.

Also, the original pathology did not show anything about teratoma. The oncologist just told me that he thinks it might be teratoma, when they found the mass on his after chemo scan.

[Scott]

Tammy, is Anthony's RPLND surgery scheduled, and if so, how soon? If the mass is teratoma, chemotherapy wouldn't have had much effect on it, but surgery should be curative.

[mstlyn]

Can you think of some other possible cause for the back pain today? I wouldn't think an emergency room visit is needed, but if it's really concerning you, it may be worth a call to your oncologist.

Well all I can say is that he is only 21 yrs old and has never had back pain until he got cancer; and the pain is in the same place as it was before. Remember that they found a mass on his scan that he just had after chemo...

The largest part of the mass was 4.5 cm BEFORE chemo .. and on his scan AFTER chemo it is 4.7cm. I am assuming it is the same enlarged node that they found before chemo.

Could it still be growing?

If he was chemo refractory, would the markers return to normal during chemo, and then begin rising after?

Im really worried and Im not sure what to think ...

If it is cancer again, can it wait until I call the dr. monday, or is it more dangerous to wait since he has already had chemo? Will it grow too fast?

[Karen]

Tammy,
I agree with Scott. There are a LOT of things that can cause back pain. You have to do what your heart tells you, but you may want to wait a couple of days and see if hot showers and Motrin hekp it out. If not, definatley mention it to the oncologist.

[Scott]

Can you think of some other possible cause for the back pain today? I wouldn't think an emergency room visit is needed, but if it's really concerning you, it may be worth a call to your oncologist.

[mstlyn]

Anthony had his MRI this morning, now we have to wait until next week to have a doc. read them and let us know how everything is.

I am now concerned about something else.

Before anthony started chemo he was having low back pain from the enlarged node.
After he started chemo that all went away.

He got up this morning and has that same back pain again.

Should I not wait? Should I take him to the ER?

Tammy

[Fed]

The pathologist will (should) test the immunohistochemistry.

Indeed. Then the evidence would be incontrovertible because one would be seeing the actual markers stain on the slide.

[Rover]

Under these circumstances, knowledge of blood marker levels could potentially impair the impartial pathological determination of a tumor sample.

The pathologist will (should) test the immunohistochemistry.

[Fed]

It doesn't always turn out that way. For example, I had elevated markers from my yolk sac and embryonal carcinoma elements, but my recurrence produced no markers and turned out to be seminoma.

You may recall that several weeks ago I had my path re-read (for a third time) by the pathologist that works in my lab at Dana-Farber. This was done in my presence with the assistance of the GU pathologist on call. When we were going through my slides, I asked him whether it was possible that one cell type would be mistaken for another. He stated that embryonal carcinoma has very similar morphology to seminoma because they derive from the same precursor ITGCN: under the scope, both cell types look like fried eggs with big nuclei. In that instance, the blood markers may help tilt an assessment into one direction, and EC will not necessarily show markers. Under these circumstances, knowledge of blood marker levels could potentially impair the impartial pathological determination of a tumor sample.

I should place a disclaimer, though, that I am not fully qualified (yet; I may go to a cancer pathobiology workshop this summer that will train me on these sort of things) to make assessments of this sort.

[Russell's Mom]

Wow

What support!!!! So glad the fog of confusion is lifting!! Thinking about you! Russell's Mom, Sharon

[mstlyn]

It doesn't always turn out that way. For example, I had elevated markers from my yolk sac and embryonal carcinoma elements, but my recurrence produced no markers and turned out to be seminoma.

Testicular cancer seems to travel a fairly predictable path for the most part, from what I have learned in here, but I see that there are instances where that is just not the case, so no doctor should rely on that.

For a cancer that is so aggressive, no chance should be taken once the cancer has spread beyond the testical.

Thank you, Scott

Tammy

[mstlyn]

I re-read what I wrote, and it was indeed confusing. My bad. What I meant to say was that a metastasized cell will behave much like the one from the original tumor. Therefore, if the original tumor produced markers, then the metastasized cell will produce them, too. Hopefully this clears it up a bit.

And awesome that Dorrie is getting everything set up for the MRI. I said it before, and I'll say it again, you are doing a phenomenal job as a caregiver and advocate to Anthony. Hats off to you for that!

That clears it up perfectly and makes me feel even better knowing that.

Dorrie did an awesome job for us today. By 4:30 this afternoon she had an MRI approved and set for May 2nd.

She decided to push them a bit more and now we have it set for this saturday!

Her friend from U of M also called her back today and they are now working on getting anthonys surgery scheduled asap.

Dorrie said she thinks the doctor will be Dr. Ohl and she referred to him as a testicular cancer expert.

Has anyone heard of him? know anything about his RPLND experience?

I'll be watching closely ..

Thank you again, Fed!

Tammy

[Scott]

Therefore, if the original tumor produced markers, then the metastasized cell will produce them, too.

It doesn't always turn out that way. For example, I had elevated markers from my yolk sac and embryonal carcinoma elements, but my recurrence produced no markers and turned out to be seminoma.

[Fed]

Im not sure I follow you about the markers/mets

I re-read what I wrote, and it was indeed confusing. My bad. What I meant to say was that a metastasized cell will behave much like the one from the original tumor. Therefore, if the original tumor produced markers, then the metastasized cell will produce them, too. Hopefully this clears it up a bit.

And awesome that Dorrie is getting everything set up for the MRI. I said it before, and I'll say it again, you are doing a phenomenal job as a caregiver and advocate to Anthony. Hats off to you for that!