Found "lumps" in my neck :(

Yeah, the affected nodes I had were hard and not particularly painful to touch at least not until later. Then I had a general soreness in the area, but I think that was from the nodes pushing on nerves and other surrounding structures.

I had a chest x-ray nearly immediately and it showed nothing according the the rad report. Two months later and I had an 11cm mediastinal tumor detected on the CT. Part of my diagnosis and treatment delay had to do with the protocols required for insurance to pay for a CT. I had good insurance, but I still needed to have an x-ray BEFORE they would pay for a CT. And, my PCP couldn't order the CT, they wanted a specialist to order it. So, I had to make an appointment with an ENT and wait to be seen by him before I could get my CT. As a side note, I actually had a CT with the ENT and my "It's Cancer!" results were sitting on his desk, but he was out of town for a week with no locum coverage and no one in the office would just go ahead and tell me. My oncologist had a good time berating him for that one.

One of the reasons that Hodgkin's is so treatable is that it is an "aggressive" cancer. It forms quickly and spreads quickly. This is actually good news, if it is caught early. Chemo is most effective for aggressive tumors, because they are metabolizing things like crazy - including the chemo drugs! 

Re: the alcohol - the docs still have no idea why the sensation happens, but only a couple of sips in and the pain is debilitating in the area of the affected nodes. It has caused alcoholics who develop lymphoma to stop drinking.

Let me know what other questions you have...

One thing that I can't find/ info is whether my likely enlarged liver is due to general inflammation or possibly that, if I do have Hodgkin's, it's metastisized.  It's actually gotten more sore just in this past week.  My CRP was 78.5 on 6/30 and my ESR was 95 on 7/11.  I know that these are general markers of inflammation - do you happen to know if it is possible for it to simply be inflammed, in general, from circulating cytokines?  Thanks!

YES!

In Canada, doctors tend to use sed rate and other inflamation markers as an indication of whether or not a patient is responding adequately to treatment and even indication of relapse, since existence of cancer and these markers are so closely linked. I am not sure how often they are used for initial diagnosis, as there will need to be some kind of biopsy in order to type the tumor. PET scanners are pretty much non-existent in Canada (I think there are 2 in the entire country!) and patients cannot easily get diagnostic or follow-up CTs which are easily available in the US to insured patients. Gotta love the reality of nationalized healthcare!

So, yes, an oncologist would be very interested in your elevated levels.

I do not think you should freak out just yet, but all signs point toward getting a CT with contrast and surgical biopsy STAT. It is certainly indicated.

Also, this is a good clinical overview for ESR w/ regard to HL.

http://www.aafp.org/afp/991001ap/1443.html

"In oncology, a high ESR has been found to correlate with overall poor prognosis for various types of cancer, including Hodgkin's disease, gastric carcinoma, renal cell carcinoma, chronic lymphocytic leukemia, breast cancer, colorectal cancer and prostate cancer.^3,14-16 In patients with solid tumors, a sedimentation rate greater than 100 mm per hour usually indicates metastatic disease, but for most tumors this relatively nonspecific finding has been supplanted by more precise diagnostic tests. However, European studies of patients with Hodgkin's disease have suggested that an elevated ESR may still be an excellent predictor of early relapse, especially if the value remains elevated after chemotherapy or fails to drop to a normal level within six months after therapy.^3,16 Certainly, an increased ESR should never be used as the sole criterion for diagnosing relapsed Hodgkin's disease."

Thank you again!!

I don't have any advice but I do have a *HUG*.  

 

You're one of the vets on here that has taught me to know more about myself and keep tabs on my own medical condition.  You're always quick to support and offer advice.  If you're anything like that for yourself your gonna pull through this just fine :)  

 

I'm swinging all the critters I can scare out of hiding :)

Thank you!!!

I know you have had other issues lately but have you checked your thyroid? Where you are describing is the thyroid area. Thyroid's are known for their cancerous or benign tumors/lumps. ( i hoped i spelled that right) I would have this checked out for sure. Thyroid can mess with a lot of things in your body. Your energy, your mood, your absorbtions of vitimins, muscle soreness, depression, and many many other things. If your doctor does confirm it is your thyroid, I would suggest going to an endocrinologist. They specialize in this and it will make a complete difference in care :)

If it's not the thyroid, I hope you all the best that they figure out what is going on :( You must be a bit frazzled with all that has been going on with you. Remember keep strong!

Take care!

Thanks :)  All of my thyroid tests came back normal except methylmalonic, which I was low on, but I can't find any information on that being a bad thing or something that doctor's are concerned with - only if it's high is it a concern. 

Two other things that I have gotten the results back for came back out of range.  My ACTH was low.  I read its main function is to regulate cortisol, but my serum cortisol on 2 occasions & my 24 hr urine cortisol were all completely normal - solidly in the middle of the normal range.  I read that low levels may be due to Cushing Syndrome related to an Adrenal tumor (I don't have the symptoms of Cushing's) or pituitary insufficiency.  Several of my other thyroid markers were on the low side of normal, but still in the normal range and some of them were solidly in the normal range.

My GnRH (gonadotropin releasing hormone) was also high.  I read that it's a neurohormone that initiates reproductive hormone cascade and specifically regulates LH & FSH released by the anterior pituitary.

I'm really not sure what to make of all this & think that an endocrinologist would be helpful in that regard.  There's not one in town & I want to give this a couple weeks to play out just b/c it's kind of enough on my plate right now, you know?  If this doesn't turn out to be a lymphoma, the endo is my next step!  In all honesty, $$ is a concern for me right now, as is the fact that I just started my job in April & I don't have a lot of time off built up.  Luckily for me, in the summer, I work four 10 hr days so I've been able to schedule a lot of my appts on Fridays, my day off!

I completely agree with you. You have juggled so much so far. Just stay strong and keep your head up, all will work out :) Like you said, if nothing is diagnosed then endocrinologist is the best bet. They not only handle thyroid but a lot of other things including hormones, which it looks like you are haveing a bit of odd numbers.
Keep us all posted on your health.
Take care!