New to the "Club"

Barnsie · New User Joined: 06 Oct 2007 Posts: 3

Hello all,

I'm a 34 year old male, recently given a preliminary dx of lymphoma (not typed yet). I've had blood work done (all normal), no symptoms - I have a lump on my neck, which I decided to go to my Dr. for. Following a neck CT, they found not only that, but a 10cm mass in my chest (eeek). A follow-up CT found nothing else below the diaphragm.

I have a biopsy Monday, and following that (and confirmation of type), I get to have a PET scan (which I am freaked out will show something that the CT didnt catch).

Needless to say, I'm scared. I have a young family, including a 2 year old son and 12 year old daughter. My wife is playing the strong one, but I know she's terrified too. I've been dumb enough to read up on all the statistics, so I know I'm looking at a coin flip for 10 years -- Way to early to say that, since I don't know what type, etc. but I can't help it.

Starting this week, I've been weak in the knees, and a little lightheaded; My guess is nerves, but I'll mention them to the Doc.

All in all, I can't complain thus far about my care. My hospital is one of the NCI-recognized community centers, affiliated with Fox Chase. Part of me wonders if I should go there directly, but my oncologist (who was a resident and a fellow of Fox Chase) seems really great. That, and in less than a week I was given 2 CT scans, blood work, and my biopsy is scheduled; That seems pretty responsive to me.

Anyway, while I hope that this is all just a bad dream following the biopsy, with the mass in my chest and everything else I doubt it. Right now I just want to gear up for the fight, which is hard without knowing what the heck you have to fight yet Smile

anjou · Experienced user Joined: 01 Jul 2005 Posts: 65

Hi there--
Please check out www.lymphomation.org there are great pages for newly diagnosed lymphoma patients.

It is crucial to get a correct diagnosis- and often recommended to get a second opinion on the biopsy at a center that has a pathology dept that sees tons of lymphoma

I go to FCCC and have been pleased with my care there. The guy who was a fellow there when I had treatment 8 years ago and worked with my onc was very nice and he was very good at doing Bone marrow biopsy. Name was Zippen I think. It sounds like they are moving you through the staging process relatively quickly and that's good.

Good luck the beginning with this is very tough, but it can get a bit easier once you know what you are dealing with and start treatment.

anjou
_________________
Follicular lymphoma grade 3, stage 2 dx 9/99 CHOP x 3 3600 rads rituxan x4

anjou · Experienced user Joined: 01 Jul 2005 Posts: 65

U of P also has a good lymphoma dept-- Stephen Shuster, one of docs there will be talking on 10/24 at an educational program at U of P for patient sponsored by the Lymphoma Research Foundation For info
www.lymphoma.org/askthedoctor
_________________
Follicular lymphoma grade 3, stage 2 dx 9/99 CHOP x 3 3600 rads rituxan x4

Barnsie · New User Joined: 06 Oct 2007 Posts: 3

Thanks for the information, its appreciated! Since you seem to be from the area, I'm currently going to Paoli Hospital's Cancer Center, which is affiliated with FCCC. I've been doing some research here, and since I got a really good first impression with my onc (and like you said, they are moving REAL fast), I'm inclined to stay with her. We shall see...

What really has me freaked out is the large mass in my chest (10 x 9 I think). Some of the sites I've read show that as a real poor indicator of successful treatment, even if its early. Needless to say, I'm pretty scared.

brainman · Posted: Sat Oct 06, 2007 9:11 pm Post subject: Re: New to the "Club"

Barnsie, I am so sorry about your diagnosis. It does sound like your oncologist is right on the case. Most oncologists come well trained and have connections with major cancer centers... like FCCC. With few exceptions, any person in the USA can get very good treatment from almost any oncologist. That is, as far as the medical treatment is concerned Wink

. It is a different story when it comes to "bedside manors." But you will find those "bad" doctors even at major medical centers. The only patients who really need to go to a major medical center are those who have exhausted the first and second and maybe even third line treatment or who, for whatever reason, cannot be diagnosed at their local hospital. In my case, I had to go to a bigger medical center because they had a higher resolution MRI and my oncologist thought it would be best for me to go there for diagnosis and surgery. However, I still went to my local oncologist for chemotherapy.

Anyhow, just thought I would put a plug in for all those local oncologists who work hard to keep us alive.

I will be thinking about and prayer for you as you await the results of your tests.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

anjou · Experienced user Joined: 01 Jul 2005 Posts: 65

It will depend on the type of lymphoma-- have seen folks with tumors that size on the lymphoma boards who have done very well and have been in remission for a long time. So, even when the mass is big folks can still do well. Try not to focus on the prognostic statistics-- google "Steven J. Gould" "The Median is the Message" it is a good essay
_________________
Follicular lymphoma grade 3, stage 2 dx 9/99 CHOP x 3 3600 rads rituxan x4

In · Posted: Sun Oct 07, 2007 4:42 am Post subject: Re: New to the "Club"

Barnsie,

Hi I'm sorry about your news. But you have the right attitude, the kick-arse attitude! Laughing

. I do the same (looking up all information and freak myself out), BUT i would rather have the information to ask or know than -not.

It's amazing how strong a love one can be. Or how family can be your life support, to help you go through the unbelieveable and back again. Even loveones need there own shoulder. I found that when i was strong was when my Husband would weaken and visa versa.

Give your children kisses and cuddles, plenty of love and time together. Make memories weither good or bad. Wink

Thinking of you and your family Inica.
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

anjou · Experienced user Joined: 01 Jul 2005 Posts: 65

I am not familiar with Paoli hosp as I live in Bucks.

Questions I would ask-- will your path be reviewed by pathologists at just Paoli, or will it also be reviewed at FCCC-- I would insist on review at FCCC in addition if they only plan to review at Paoli. I also might request, if enough biopsy material is removed, that a sample be sent to yet another ctr for review-- mine was sent to a pathologist named Swerdlow at Pittsburgh Med Ctr and he is tops. This could speed up the process-- mine was done sequentially and it took several months to get the path sorted out as it was not typical.

Relatively high percentage of lymphoma path done at community hosps gets changed when sent to major ctrs. I think getting second opinions on path may be more important than getting second opinions re treatment as its critical to get accurate dx.
_________________
Follicular lymphoma grade 3, stage 2 dx 9/99 CHOP x 3 3600 rads rituxan x4

jfkbluecircle · Posted: Sun Oct 07, 2007 6:27 pm Post subject: Re: New to the "Club"

Hi, Barnsie,
If it is any consolation for you, I had stage IIIB HL 10 years ago, mediastinal mass as the primary site (mine was also 10 cm) with a secondary site in my spleen (7 cm), and many other lymphnodes involved (scattered).

I had 12 tx of ABVD chemo, no radiation, and kept my spleen. Ten years later I am still here Smile

. (I am 36.)

It sounds like you have good doctors, and trusting those folks is one of the most important aspects of your recovery.

I know this is traumatic for you, as a father, husband, and person, but you have found an awesome community of people who have been through or are going through what you are.

Best of luck on your biospy tomorrow.
Please let me know how things go; you and yours will be in my thoughts and prayers.

All my very best,
Jessica

Barnsie · New User Joined: 06 Oct 2007 Posts: 3

Hey all, quick question on my current situation:

My bloodwork (both in a test a month ago, as well as one 4 days ago) came back normal. My CT scans show only the mediastinal mass and the neck nodes enlarged (nothing else). I was given my preliminary dx last Monday.

I've been lightheaded, sleeping alot more, and tired this week. Could this just be anxiety? I've been REALLY freaking out over this. Could I have drastic changes to my system in just a couple days otherwise?

My wife will call the oncologist tomorrow (I'll be groggy post-surgery following the biopsy), but I'm hoping its just what I think it is. Seems kinda odd that I'm feeling this way immediately following my diagnosis...

In · Posted: Sun Oct 07, 2007 9:57 pm Post subject: Re: New to the "Club"

Barnsie-

Sometimes it's almost a mind thing. When you find out you have something, You start to feel more weird or strange things with the body. OR after you find out- you start to take notice of these things, and wonder.

Anxiety can cause alot of these sypmtoms you have- i would call your DR and ask. It might ease your mind a little. If you are having really bad anxiety attacks, they can give you someting to calm down.

Good Luck- Thinking of you All.

Inica
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

	Cancer Forums Forum Index -> Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others