So much for surveillance

[mercyriver]

My husband recieved a phone call from his Dr's office this morning, lymph nodes are enlarged and HCG is elevated is what they told him.

We have our follow-up visit tomorrow morning, so we will find out exactly where we will be going from here.

My husband said from what he has read he will be doing surgury to remove the lymph nodes and then chemo if needed.

I warned him I thought it was the other way around, chemo then surgury if needed.

Guess we will wait to hear what the Dr says tomorrow. But if he does say, oh just surgury for now, I will argue and get our second opinion.

Not really the Christmas gift I was hoping for, but the New Year should look pretty nice.


Becki

__________________
husband dx Sept 11,2006, right I/O Sept 11,2006, 100% Embryonal Carcinoma

[Scott]

Becki, you're right that with persistent elevated hCG, it will be chemotherapy. After that, there may be a choice of surveillance or RPLND.

[dadmo]

With the elevated markers it will be chemo first.

[mercyriver]

No chemo yet

Well we saw the Dr this morning. Strange thing is as of right now we are still on the fence. My husbands Beta HCG was right at 5 (less then 5 is normal), up from 3 last month and less then two the two blood tests before that.

His CT scan showed two lymph nodes, enlarged by about 6mm from last CT scan back in Sept, one is 1.8 and the other 1.9. And a new enlarged lymph node at 8mm.

So, all three Dr's, oncologist, urologist and radiologist agree the chance that it is cancer in the lymph nodes is very high, but they want to do a PET to make sure.

All other blood work was normal. Though his WBC was down from 8.6 last month to 5.3 this month. Not sure if that means a thing!

Also, the LDH, which I was concerned about because it was rising month after month actually dropped this month.

One thing that did occure to me after we had left the oncologist office, they never did the Chest X-Ray this month. This Dr is starting to loose my trust.

So the oncologist decided to try to schedual a PET for next week, assuming the insurance will cover it. If it comes back positive, we will do chemo, my husband thought the Dr said he won't do until the new year, I think I heard he would start it right away.

If the PET comes back negitive, he warned it could be a false negative, due to slow growing cancer cells. If that is the case they will do more blood work the day after Christmas to check to see where the tumor marker levels are.

So really we are at this moment no closer to anything then we were yesterday.

Hoping for some answers soon!

Becki

[IowaBrian]

Hope everything goes back to normal that would be a great X Mas gift!!
Remember that your doctor could contact Dr E if needed.
Good Luck
Brian

[Michael112]

Ask for a 100mg shot of testosterone every week for I dont know how long (1 2 or 3 weeks?) and see if bhCG returns to normal.

[mercyriver]

Michael-

Pardon my confusion, but how would low testosterone cause Beta HCG to rise in a male?

I know I could be wrong, but I thought Beta HCG was not naturally found in males? It is only secreted by certain tumors.

It would be facinating to read medical documents stating other wise.

Becki

[Scott]

Becki, the TCRC dictionary does note, "...the HCG level can become elevated (falsely positive) due to abnormally low levels of testosterone..." I'll have to look for the medical explanation.

[mercyriver]

Very interesting

Scott,

That is very interesting, honestly though he doesn't exhibit any of the other signs of low testosterone, except for the tieredness, which can be caused by the reccurrence. Also the ever growing lymph nodes, even though still less then 2cm, two 1.9cm and 1.8cm, of concern and one 8mm of growing concern.

The PET scan was supposed to be next week, but the Dr still hasn't gotten back to us. I am about ready to fire our Dr and move onto someone new! My husband isn't quite as eager to dump him, but is eager to get things figured out.

Becki

[blindbe2]

Becki-

I am currenlty experiencing an elevated b-HCG. I haven't broken through the 5 barrier yet, but it has been consistently elevated (2-4) since my I/O in May. My PET, CT and CX have been negative.

From what I've been told, and read, there are certain people that can have a "naturally" elevated level of b-HCG. My oncologist is currently seeing a TC patient from 12 years ago that has had a consistently elevated HCG (under 10) since his surgery and chemo treatment in 1994. Chemo did not resolve his levels. It is remarkable to point out that an elevated b-HCG is not normal and should be watched closely.

Good luck in all your findings.

Ben

[ebfun7]

Elevated HCG

Dr. Einhorn has told me and my husband that unless an HCG is rising accroding to its half life (5 one week, 15 the next, 45 the next.etc) then there is nothing to worry about. He told my husband that some peoples HCG plateau between 5-15 and that is fine as long as it is not going up. He followed this by saying if an HCG was 80 and it stayed at around 80 forever then he would have no problem with that either. I would definatly get his opinion before getting any treatment for an HCG that is 4-5, and not up to 10-15 the following week, and 45 the week after. Dr. Einhorn states the BEST indicator off active cancer is tumor markers and when there is a reoccurence you will see a rise in tumor markers according to thier half life. If an HCG is hanging out between 2-4 consistently this is no rising according to its half life. Also it depends on the institution what an elevated HCG is. Emory it is less than 5, Indiana it is less that 3, and Lab Corp is is less than 8.

Hope this helps. As you can tell my husband has had a reoccurence twice and both have been diagnosed according to an rising HCG.

[mercyriver]

Ben and Erin,

Thank you both for your encouragment and information.

So far we do technically have a rise, but only so slight. I am having a hard time getting my husband to do anything to help ease my fears and continue to follow the correct surveillance. They forgot to do the chest x-ray this month and my husband keeps on insisting it isn't that important because he is most likely doing chemo.

It is really hard trying to help someone so stubborn. Thankfully his stuborness is normally only temporary.

Of course now I am being nagged by a rising paranoia, I am not sure if it is all in my husbands mind because he is facing chemo soon or if it is something else, but he is being bothered now by a nagging cough, from a cold (I hope) he has had for several weeks now and today he was complaning that his lower abdomon and his shoulder were hurting.

Nothing seems to move fast with our oncologist. Though I did tell my husband if he doesn't get an answer about his PET scan by noon tomorrow I am dragging the kids down to the cancer center and talking to them face to face about it. I can't understand why nothing seems to move quickly with them. My husband says they are just human and make mistakes too, it is just frustrating when it comes to you won loved ones.

Once again, thank you for your encouraging words.

Becki

[Lori]

Becki, continue to be persistent with the doctors. I know it is frustrating to have to deal with them on top of all the emotional stuff that goes with this diseaes, but keep you mind you and your husband are the ones in charge! Good Luck.

[petep]

pls. read my thread -

I was almost a carbon copy of your husband...

http://www.tc-cancer.com/forum/showthread.php?t=3015

I am happy to answer any questions....what I can emphasize is this:

- when my hcg went from 0 to 2.x then to 4.6....but before I had my CT scan whoch confirmed enlarged nodes, I was told by einhorn that sometimes normal, cancer free males to have elevated bhcg and and did say he would never start chemo is the ONLY evidence was bhcg < 10....

but when I showed the enlarged lymph node that was NOT enlarged before...plus the elevated bhcg...that was enough to warrant chemo....

the main reason for the chest xray is to check the lungs, sometimes embyonal goes there, skipping the lymph nodes....but either way, it'd be chemo...just 3 vs. 4 cycles....

If such a low bhcg and a few enlarged lymph nodes, he is in the best of the good risk category.

Please feel free to ask me any questions.

pete

[mercyriver]

Lori-Thankyou, it is hard sometimes to remember that even though we are not the ones with the medical degree we are allowed to question what the Dr's do. I am not sure my husband feels this way.

Not going to let this get away from us though.


Pete- I have read through your story and I noticed last week how it was starting to sound very similar to yours.

Just curious, did you have any symptoms prior to recurrence? I don't think my husband notices when he is feeling different, he always has a reason why it couldn't be related to his health.

Thanks for the encouragment. It does make a difference.

Becki