surveillance anxiety

[zesasmom]

Havent posted in a while but read daily. Today is my sons first blood work.chest xray since he was diagnosed and put on active surveillance. Of course im terrified as usual. He seems extremely calm as always. Hoping for good news and hoping my anxiety will lessen every month ughhh.

On another note...when eli was diagnosed we sent all reports pathology.etc to dr.einhorn through his secretary. The phone tag went on for a while so i finally .did as so many here suggested and sent dr einhorn an e mail giving him elis pathology etc. He responded within 30 min saying " your son should be on surveillance. Should he relapse bep x3 should give him 100% cure". Those two sentences meant so much to me and yes as ive read on this forum time and again he is truly a saint!

So extremely grateful.for this forum!!

Lori
Eli s mom
50% yolk sac 35% embryonal 15% seminoma no lvi
Stage 1a
Active surveillance

[zesasmom]

Maybe this should be under all clear so feel free to move it but just a follow up...chest xray and blood work all normal for my son s first surveilllance check up. His afp decreased from 10 post i/o to 2.5 even with those weeks of college parties in the berkshires that i was concerned about. Hopefully the first of many all.clears!! Much thanks to everyone on this forum for endless support.

Lori
elis mom
50% yolk sac 35% embryonal 15% seminoma
No lvi
Afp prior i/o 98.1 all other markers normal
after i/o afp 10 all other markers normal
Active surveillance
8/17 afp 2.5 all markers normal....all clear!

[Scott]

So glad to read the good news!

[ynwa96]

your son should be on surveillance. Should he relapse bep x3 should give him 100% cure". Those two sentences meant so much to me and yes as ive read on this forum time and again he is truly a saint.

Congratulations on the all clear.
Remember the life of the care provider is different to the sufferer. I truly believe that some/most sufferers have to take things in stride (not to belittle this) and the stresses are greater for providers. Your son is taking things in his stride which is great.
And as to Dr. Einhorn, you are correct, he is a saint. I have my email where he told me I am almost certainly cured, framed.

Congrats on the all clear and your son is doing great.

Cheers
Ynwa

[AustinsMom]

Hi Lori,

I am so glad to hear Eli's good results and that he is on surveillance. Dr. Einhorn is nothing short of amazing. I think what Ynwa said is so true, especially with Mom's of some of the younger guys with TC. I swear, I did 99% of the worrying and took on most of the stress. Austin really took the whole thing in stride...... once he was assured it was highly unlikely he was going to die from this.

I will tell you honestly, surveillance was extremely stressful for me. I had a gut feeling that Austin would need chemo ( he had a high EC content and LVI) and so, in a strange way, I was relieved when we found out he did. I just wanted to get it over with. In your case, Eli has a much better chance of being done with this and not requiring further treatment. I think as time goes on, you will relax more. I always scheduled Austin's blood work the day before our Oncologists appointments though, so I knew the results would be in when we arrived. I made sure I did not have to wait over a week-end. Once they took that blood, I was really nervous and wanted to know asap! He has his CT Scans and X-rays done right at Johns Hopkins where he is being treated. Sometimes, I have been able to get the preliminary report before leaving the hospital by going up to the Oncology Dept. Otherwise, our Oncologist is fabulous about calling or texting us with the results later that day or at the latest, the following day. Waiting is the worst!

Wishing you continued "all clears" for Eli!
Diane

[james1980]

I also had a stage 1A non-seminoma, and have been on surveillance now for just over a year, and have recently had a clear CT scan.

Whilst it's natural to be concerned, the chances of avoiding relapse are good in a stage 1A case, and any relapse can be caught early and treated effectively. Surveillance gives a good chance of avoiding having to have any more serious treatment entirely, and, what's more, because recurrence is more probable closer in time to the operation, every all clear that your son gets makes it ever more likely that the next check up will also be all clear.

[zesasmom]

Thanks everyone for the replies on eli s last surveillance. Diane i always read your post and am so glad austin is well and all clear. I can only imagine going through this with my son at 16; 22 is hard enough!

Also james its so encouraging to read your all clears - thanks for sharing!

So here i am with my anxiety again. Eli went to oncologist today. The dr said they will do blood markers and chest x ray every two months and ct every 4. I think this is in accordance with nccn guidelines. Eli s last ct was before his i/o and it showed "several prominant paraortic lymphnodes up to 1cm". His oncologist and urologist in florida viewed it as clear and staged him 1a as markers returned to normal. I was somewhat concerned about the lymphnodes but didnt press the issue for a follow up ct as i had read over 1cm. Also.eli did have a urinary tract infection so dont know if that could enlarge the nodes.

In anycase today the onc said he concerned about the lymph nodes and ordering ct (no blood markers or chest xray this month) and if come back enlarged will discuss surgery, i assume rplnd. Now im feeling that i should have pushed for a ct sooner and terrified that it was cancer that was ignored.

The only thing that is keeping me sane is i did email dr einhorn and gave all info including the lymphnode size etc and he said eli should be on surveillance 3x bep should give 100% cure if relapsed. Never mentioned rplnd. I know he leans toward chemo and hes brilliant and i trust his opinion which gives me some peace of mind that we did the right thing.

I know im getting ahead of myself but if the lymohnodes are still up to 1cm maybe we should have or should do the rplnd idk. I hope we didnt miss something that could make elis prognosis or treatment more difficult. I recall reading from one of our forum members in chapel hill nc that his dr said to see any.lymph node on ct in young person is sign of spread. If thats the case eli s has been spreading since june!

All i can do is wait until monday and pray the nodes havent enlarged. Its so extremely hard and im sorry to vent but just feel afraid all over again. Thanks to everyone on this forum for your kindness and my best thoughts are always with everyone going through this journey.

Lori
Eli s mom
I/O 6/15/12
50% YOLK SAC 35% embryonal 15% seminoma
No lvi markers returned normal
Surveillance
8/12 markers and chest xray all clear

[AustinsMom]

Hi Lori,

I can certainly relate to your angst. It always seems to get to me around CT Scan time the worst.

In terms of enlarged lymph nodes, I have never heard that any visible nodes in a young person, no matter what size are not a good sign. However, our Oncologist did tell me that infections can certainly cause inflammation of nodes around that specific area......they are doing their job.

The CT Scan timing is right on at 3 months, although every 4 months is, I believe what Dr. Einhorn suggests. (In our case, Austin will be getting his second post chemo Scan in a couple of weeks at the 3 month mark and then will be moved to every 4 months. He will have chest X-rays in between. Blood markers are checked each and every month.) I am curious though as to why the blood markers, especially with Eli's pathology, are not checked every month? It is such a non invasive procedure and is often the first sign of a relapse. I could understand if he had not produced markers in the beginning, but since he did, I would ask his Doctor about that.

Why the Oncologist is hinting at surgery over chemo and what the size criteria for enlarged nodes is confusing, at least to me. Even in the 1 - 2 cm. range, there is some discretion used as to whether this indicates a malignancy.....at least according to our Pediatric Oncologist. Are you able to go to these appointments as well? Just wondering......I know I would get a completely different explanation of what the Doctor said if I heard it from Austin....or even my husband! Did one Oncologist say he was not concerned about the nodes and his new one is? Or is the same Doctor all of a sudden indicating he is concerned, with only his original CT Scan to observe on thus far? No matter what, its always good to seek a second opinion, but I would THINK chemo would be the preferable treatment for Eli, before a RPLND. I know it's going to be a long week-end......just remind yourself that no matter what, this CAN be treated and Eli WILL be fine.

Stay in touch and keep us posted. Thinking of you,
Diane

[BarclayBanister]

I would put great, great stock in what THE MAN (Dr. Einhorn) says.