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Searching for answers

Susie52
Posts: 5
Joined: Jul 2012

Hello Everyone,

I hope no one minds that I am only a "possible" case. I have received some strength from you already and it helps me to keep pushing my doc for an answer.

First my symptoms (Dec 2011): pain in back around left shoulder blade that hit me like a blow along with nausea. The back pain dulled to an ache within minutes. These symptoms have been coming and going with increasing frequency over the past 7 months. Blood work, xrays, ultrasound all negative

Mammo and another ultrasound negative

Barium swallow and another X-ray and ultrasound negative

Jump forward to June- ache/pain in back and nausea are pretty much constant. Breast cysts hurt more often, and lymph node under arm ache - off and on and never when I am at the doc's. No weight loss, night sweats, or fever. I get these bumps in just about any location on my body but mostly clavicle and up, especially on head and face. I only notice them because they are so itchy as they arrive. Some are the size of pimples and a couple of them are pea sized or larger. I also have had an ear infection, eye infection, and swollen gland under ear. MRI and bone scan negative (thank goodness).

I think everyone at the doc's office thinks I've lost my mind since last fall (sister dx with stage 4 breast cancer and a brother survived a deadly heart attack - sis is 41 bro 48 I'm 52)

What makes me think lymphoma? The spot that aches does not have a lot of anything else to cause the ache let alone be accompanied by nausea. Mediastinal chain would explain it.

So here I sit hoping like heck that I'm crazy :-) . If I'm not, you have all given me the confidence to accept the disease and push through treatment so that I can one day look forward to having those grandkids I've always wanted.

You are all inspiring and need to remember that by sharing your stories silent others are helped everywhere.

THANKS

Sue

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Hi Sue and thank you for you kind words and welcome to the site.

Regarding your discussion - have they not referred you to any
kind of specialist? You are having symptoms and hopefully someone
can get to the root of it. I hope you find some answers soon.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

Susie52
Posts: 5
Joined: Jul 2012

The worst part about my symptoms is that my poor doc has nothing much to go by. The node I expect to find in trouble is deep inside so can't be felt. The little pop ups only appear for a short time and never at docs. All imaging has been negative. I take that as a good thing because that means there is nothing big in size. He is trying to get me in to a doc of internal medicine but there are not many left these days (I'm in Canada) and there is a bit of a wait. (3 weeks now but who's counting.).

To be fair to docs, I didn't even take this overly serious until about 6 weeks ago. That's when the extra symptoms started to pile on. I think I'm fortunate to have a good relationship with the doc so he doesn't just dismiss me as a nuisance. If it takes much longer I'll be insisting on a PET as it sounds like the best option for finding small node problems. I don't want to have to cough up the $4500 on my own but will if I can't get there in Canada through regular channels. No way I want to waste my early warning signal.

So this week is a good one with a little less pain and nausea and hardly any itchy spots popping up. Seems to be about a 4 week rotation...

Thanks for the positive thoughts. I'll update when I find out anything. Has anyone else had the ache under the shoulder blade from this? 

Sue

Susie52
Posts: 5
Joined: Jul 2012

The worst part about my symptoms is that my poor doc has nothing much to go by. The node I expect to find in trouble is deep inside so can't be felt. The little pop ups only appear for a short time and never at docs. All imaging has been negative. I take that as a good thing because that means there is nothing big in size. He is trying to get me in to a doc of internal medicine but there are not many left these days (I'm in Canada) and there is a bit of a wait. (3 weeks now but who's counting.).

To be fair to dogs, I didn't even take this overly serious until about 6 weeks ago. That's when the extra symptoms started to pile on. I think I'm fortunate to have a good relationship with the doc so he doesn't just dismiss me as a nuisance. If it takes much longer I'll be insisting on a PET as it sounds like the best option for finding small node problems. I don't want to have to cough up the $4500 on my own but will if I can't get there in Canada through regular channels. No way I want to waste my early warning signal.

So this week is a good one with a little less pain and nausea and hardly any itchy spots popping up. Seems to be about a 4 week rotation...

Thanks for the positive thoughts. I'll update when I find out anything. Has anyone else had the ache under the shoulder blade from this? 

Sue

allmost60's picture
allmost60
Posts: 3177
Joined: Jul 2010

Hi Sue,
"Welcome" to the group....I'm a Sue also. :) I would think the best way to know beyond a shadow of a doubt if Lymphoma is present, is to have a biopsy done on one of the swollen nodes. Once the largest lump on my groin was removed and sent to pathology, we were able to determine everything...subtype-grade and Type. Hopefully you will find a doctor willing to do this to eliminate the guessing and wondering. Please come back and share what you find out. Best wishes...Sue (age 61)

Susie52
Posts: 5
Joined: Jul 2012

I know you are right about the biopsy but I think my doc has to follow a protocol and actually feel one or see the swelling before he can order me opened up. Hopefully will get a PET in the very near future so it becomes visible.

I have had a disturbing sign this week with my breast. One issue that my doc can actually witness and test. So I'm off to another ultrasound where they won't see anything. Good thing my employer is great about all the appointment time.I think I've had almost 10 ultrasounds on my breasts alone since my sister's dx. They found something suspicious and are imaging every 6 mo's. I have asked if the back ache could be the breast lumps presenting backwards but breast doc said no.

Ah well, I need to have a little patience. As much as this isn't great, I have every reason to believe I'm catching this early.

I will update you on my results.

Sue

Susie52
Posts: 5
Joined: Jul 2012

I know you are right about the biopsy but I think my doc has to follow a protocol and actually feel one or see the swelling before he can order me opened up. Hopefully will get a PET in the very near future so it becomes visible.

I have had a disturbing sign this week with my breast. One issue that my doc can actually witness and test. So I'm off to another ultrasound where they won't see anything. Good thing my employer is great about all the appointment time.I think I've had almost 10 ultrasounds on my breasts alone since my sister's dx. They found something suspicious and are imaging every 6 mo's. I have asked if the back ache could be the breast lumps presenting backwards but breast doc said no.

Ah well, I need to have a little patience. As much as this isn't great, I have every reason to believe I'm catching this early.

I will update you on my results.

Sue

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

I love the new pic sue! The old one used to scare me a bit ;)

allmost60's picture
allmost60
Posts: 3177
Joined: Jul 2010

Ha!ha!...she was eating rice krispies and "YES"...those little chompers of hers did look a bit scary with her mouth opened so wide! My computer isn't showing the new picture yet..???..weird how that happens. Sue (FNHL-2-3A-6/10)

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