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Do I push for further testing?

Chende
Posts: 3
Joined: Feb 2017

Hi, I am new to the group, I am a 30 year old female, have not been diagnosed. But have gone thru some tests to figure out what is wrong with me, no answers yet. 

Let me start off with some history, 11 years ago I was diagnosed with Thyroid cancer and had a full thyroidectomy, and had 2 rounds of radiation treatments, and have been in the all clear for that. 

Marriage and 2 kids later...

About 2 months ago I noticed a swollen lymphnode in my groin, shrugged it off, thought maybe just an infection it will go away, 2 weeks later, bigger plus a second one. Made an appt with a gyno took 6 weeks to get in, noticed more in groin, neck and under arms during this 6 week waiting period. Wasn't too concerned, did an ultrasound, found 1 cyst. Again wasn't concerned.

In the meantime I had found a few swollen lymphnodes in my neck, and 1 under my arm, have also become exhausted, (just thought I am an active mom of two kids), and have been unusually warm, (thought just change in weather, warm February in Indiana). I called my PCP and went in the next day, she said its probably mono or possibly lymphoma, did bloodwork, and mono test, everything came back normal, mono was negative. She sent me for a neck ct to check my nodes in my neck only. The ct came back clear, noticed the nodes swollen but werent concerning. They said I have a possible small pseudoaneurysm 6mm, on my corotid, so I am being referred to a vascular specialist, appt in 2 weeks. But I don't feel as if this would affect my lymphnodes and cause such fatigue. 

Since then I have become just unwell feeling, still exhausted, just taking a shower or making dinner gets me out of breath and so tired. I feel bad for my kids because I lack the energy to play like I used to. Still unusually warm all the time, sweating as I type this. No fever, but my chest feels tight, and my lower back has been hurting as well as my neck, feel like I have been hit by a truck. 

Any insight would help, what should I do next, my PCP doesn't seem too concerned, should I get a referral to my ent or an ocologist. Just so lost and tired of being tired. Thanks in advance. 

po18guy
Posts: 1042
Joined: Nov 2011

I would ask to be screened for known autoimmune disesases, as they can produce those exact symptoms. With a cancer history, more interest should be shown. Think about seeking another doctor.

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hello Chende,

I think that it would be a good idea to see another doctor to get a second opinion.

Good luck!

Sten

PBL
Posts: 190
Joined: Jul 2016

Hi Chende,

Based on your account:

You mention a neck CT, but did they really stop at the neck? How come no one seems to have investigated the nodes in your groin - or are those gone now?

Regarding your chest tightness and breathlessness, and if the CT was indeed limited to the neck, have you had a chest x-ray yet?

Also, have you thought of documenting your feelings of being warm by keeping a temperature chart (early morning / mid-afternoon / bedtime) over several days?

PBL

Chende
Posts: 3
Joined: Feb 2017

They did only ct my neck and did not check the nodes anywhere else, my groin nodes have not changed recently, still swollen a couple larger then the others, my PCP said the nodes in the groin swell easily, so she wasn't concerned with them. They have not done a chest xray or anything else. Just bloodwork and neck ct. 

Chende
Posts: 3
Joined: Feb 2017

Thanks for your responses, I will start documenting and get ahold of my drs and request them to further investigate.

ShadyGuy's picture
ShadyGuy
Posts: 454
Joined: Jan 2017

Blood work, including LDH is highly recommended. If you are really concerned, and I would be, go to an oncologist for a consultation. Based on my experience I would advise not messing around with non-specialists. PCPs are great for a stubbed toe or sore throat but are not really equipped to diagnose or deal with a serious illness like cancer.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3363
Joined: May 2012

I would insist that my PCP do a CT of the chest, abdomen, and pelvic region. If he refused, I would go to an oncologist.

You have enough suspicious activity going on, plus a former cancer, to justify this.

I was diagnosed with advanced Stage III disease from armpit (axillary) to armpit, and from the groin to the collarbone. Many nodes were very large. But I never felt a node prior to the CT.  In fact, I have never felt a palatable lymph node in my entire life.  The day before my CT, my PCP  felt my armpit for nodes, and could not detect anything for some time, and then said he "felt a little something."

A golf-ball sized node was then extracted from where he had been touching.  PCPs do tend to accept any most-likely diagnosis rather than cancer.  And ENTs are worse than PCP -- they will antibiotic you to death, no pun intended.  And know that my CBC results were NORMAL at that time. Blood panels are necessary, but often they indicate a "false negative"; that is, they suggest that noting is amiss, when in fact a lot is.

Get a thorough scan now from that doctor or go to another.  Lymphoma diagnosis is usually not extremely time-sensitive, but neither is skirting around it forever a good idea either.

max

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