Just checking in!
 

Hi folks, its been awhile since I posted or interacted here, so I just thought that I would stop and say hello, see whats going on here, and give you an update on myself.


Wull, where to start.........
I found out that my particular case is indeed a weird one, and had really stumped the 4 oncologists in the office that I go to! My main oncologist has spent many hours doing research, and talking to cancer centers all over the world on if I should be treated. It is running at 50/50.
Cleveland Clinic, MDAnderson, etc, says not to treat due to the size of tumor. Another hospital in West Virgina, one in Brussels, and one in Holland told him to treat me.
So, he suggested in doing the OncotypeDX test to help me decide if I wanted to go thru treatment. It was expected that it would come back a bit on the high side because of the her2.
My score came back at a 52 with a distant recurrance at 10 years at 34%!!!
He told me that he has never seen a score that high, most people don't even score that close to 50, and the doctor at Genomic called him and said this was off the charts. (I've been a difficult person all of my life, just ask my wife!)
I went in this am to see him, and he now strongly suggested that I do the chemo dance with some Herceptin thrown in. He told me that at first he thought I only needed Tamoxifin, but now after talking to other experts , because of my age,and now this Oncotype score, I should do the chemo.
I agreed with him, and I start next Friday. I also have a bone scan on Tuesday, and a full body CT scan on March 19th.The main problem is that nobody seeme to know because there is no data on a 40 year old male with breast cancer.
So now I guess I get to be a genuine crash test dummy!

Oh yeah, I almost forgot....I also see the neurologist on Thursday to find out the results of my spinal tap, clavical MRI, and blood work. I guess at this point MS is pretty minor! I still don't see any symptoms of that and I'm hoping it is a B12 thing.

Does anyone know when the swelling and pain from the node removal goes away in your arm? It's still so swollen that I can't wear a long sleeve shirt. I forgot to even ask the doc today about that. He is very shaky and nervous when he talks with me so he prolly didn't even notice. Very nice guy, but I'm 6'5 and 300 pounds, and he is about 4 foot and 80 pounds soaking wet, so I think he is a bit shy and intimidated around me. I'm not mean or anything, heck I'm prolly one of the nicest ogre's he has ever met. So I dunno, maybe it's me. Would it be in bad taste to give him a deodorant gift box set for his wet armpits next Friday?

Duga
I like your attitude...keep it up, you will do fine...probably a good thing they are doing the chemo with the Herceptin....you are pulling out all the stops to kick this in the butt right from the start, we are hear for you with any questions you may have.....
P.S. Gift wrap the box for the doc so he can see your sensitive side!

Duga,

Thank you for making me feel better - I finally found someone with a higher Oncotype Score than me (mine was 44).

I am impressed at the range of hospitals you sought opinions from. Out of curiosity, did you personally go to the European hospitals for evaluation, or did you just have your case reviewed on paper? Was there a reason you chose those particular hospitals?

Best of luck to you with your treatment,

Hopeful

As you know, your treatment is up to you. If it were me I'd do the chemo. Your stats are similiar to mine except your tumor is smaller, but you are younger and male. I'm guessing there's not a whole lot of research out there for you.

Sorry about the arm. Recently, they do a sentinel node biopsy. Take out the first 2 that the nuclear dye light up. Reduces the side effect you speak of. They need to order you a cuff for your arm to control the swelling and pain.

It's give your onc a break month. Don't give him the toiletries.

Best of luck, BB

Hi Duga - good to hear from you. Lots of decisions eh?

I'm glad you are having the chemo - I was diagnosed with DCIS back in 2003 - Grade 3 with comedo necrosis - and a 2nd opinion I sought recently said I should have been given chemo back then - which I wish I had - as the BC came back - this time Stage 4 Her2 - but who knows - cant change the past.

Anyways - hope all goes well with your treatment. I wear a compression sleeve for lymphodoema to my left arm and see a physio for ongoing asssessment.

All the best
Blessings
Hermiracles

Hi ladies :)

Hopeful, I didn't choose those locations for opinions, my oncologist did. He has done all of the legwork for me, so now I don't see a reason for me to go searching for answers. In fact, I have an email that he forwarded to me from the doctor who was the main investigator of the HERA trial that approved Herceptin.

Actually, I'll cut and paste it......

The names of been changed to protect the guilty:)



Hi, just want to farward email response from Dr Leyland, main investigator of HERA trial which approved Herceptin in adjuvant setting. Pretty much the same response i got from other experts. Dr xxxxxxx.

----- Original Message -----

From: xxxxxxx@aol.com

To: xxxxxxx@rrbiznet.com

Sent: Tuesday, February 12, 2008 5:45 PM

Subject: Re: advise on a difficult case

Very, very difficult, Noman.

Even the more aggressive are using 5mm as a cut-off.

Small, node negative lesions, as you know, are not usually treated with chemo.

I would run adjuvant-on-line and present the data and the risks to the patient. I would also suggest Oncotype. Choices range from Tam only/ chemo followed by Tam/ chemo + Herceptin (eg TCH) followed by Tam.

To me,it really depends on how agggressive the path is/ LVI, etc

Warmest, B

In a message dated 2/12/2008 3:39:16 P.M. Eastern Standard Time, XXXXXXX@rrbiznet.com writes:

Hi, I need your advise in a difficult case,

39 y/o male with 2.5mm poorly diff adeno with DCIS on Rt mastectomy, 17 lymph nodes negative, ER/PR and her2 neu strongly positive, Fish 4.5 .

I confirmed with pathologist her2 neu was done on invasive tumor.

I would really appreciate your comment.

thanks, Dr Noman xxxxxxxxx

Bev, I wasn't able to have the sentinal lymph node surgery.

When I had the masectomy, they did a freeze biopsy on the tumor to see if any infiltrating cells were found. None were found so he didn't take my nodes.

A week later the full pathology report came back and said that I did have some infiltrating cells, and a month later I went back in for a node removal :)

Hermiracles,

That is exactly why my wife and I chose to do the chemo now. If it comes back I don't want to sit around beating myself up with the could have should have thing. :)