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Not diagnosed just a question.

alittlelost
Posts: 6
Joined: Mar 2016

My groin lymph node became swollen (Oct 2015)after an adnexal mass ruptured (July 28,2015). I figured it was just a response to the mass rupturing and bleeding into my abdomen.

Unfortunately the lymph node is still swollen and actually getting bigger. I've been having issues with edema, and I've noticed my neck is minorly lopesided. I tried to see a regular doctor about all this issues I've been having, the rash on my neck and chest, the fatigue (which is really bothering me), and the achey joints I occasionally get. She didn't even look at the rash and just said it was anxiety (which I am not) gave me some pills that did nothing for the rash and sent me on my way. The pain in my hip got very bad so I went to a qquick care clinic. No arthritis in my joint, no infection but they prescribed me antibiotics anyway. I've taken them and they have also done nothing. 

I go back to my gyno-onocologist the first but she also brushed the groin node off as well last time I saw her. Saying it was arthritis which it's not.

I suddenly gained weight and then lost 11lbs in four days. I'm now consitantly losing even though I"m not trying. I just don't feel well.

I have had a history of low lymphocyte levels, but it's been pretty minor.
I do have a strong family history of Lymphoma in my family, including my paternal grandmother.

So since I can't seem to find a doc to take me seriously, what should I do?

 

alittlelost
Posts: 6
Joined: Mar 2016

Also I have been having night sweat which I attributed to hormone issues, except my hormones checked just fine. The nausea and stomach pain are getting worse.

With all of this being said there is concern that I may have something bad on my ovary.

Max Former Hodg...
Posts: 3701
Joined: May 2012

Welcome, alittlelost.  With your screen name, you are a perfect fit for this site !

If you are not of menopausal age, the night sweats are a cause of concern; few things except menopause and lymphoma cause serious night sweats.  Serious, long-term fatigue is also a hallmark.  Many here were told for years that their worries about lymphoma were 'nothng.'  Lymphoma is not regarded as highly congenital, but a family member with it does increase the probability of getting it slightly.

Why do you already see a gynecological oncologist ?  I ask because it is probably relevant to diagnosing lymphoma...if you have or have had ovarian disease, it could very easily explain the night sweats, etc.

max

 

 

 

 

 

 

 

 

 

 

 

 

 

 

alittlelost
Posts: 6
Joined: Mar 2016

July 28th of last year they discovered an 5.1cm complex ovarian mass, the hospital sent me home and told me to see a specialist. So hence the reason I have a gyno-onocologist. We found out the mass had ruptured and that's why I was so sick. My lymph node began to swell Nov, not Oct of last year. I told the gyn-ono about the pain and such, then messaged her when the node didn't go down after several weeks and antibiotics. She told me to see a PCP,which was pointless because the doc there did absolutely nothing except prescribe me some anti-itch/anti-anxiety drug which didn't do a thing for either the rash or the itching. Never evven looked at my rash or the swelling in my groin.

My edema and pain are getting worse, as I said it could be from the regrowing ovarian mass.

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

can you tell us more about July of last year.

How long were you in the hospital ? Who saw you ?

What tests did you have ?  Was there any pathology results ?

Were there any tumor markers sent ?

Do you have your records ?

alittlelost
Posts: 6
Joined: Mar 2016

I wasn't in the hospital, went to the ER they sent me home with a referrel to a specialist. Got into the gyn onocologist in Sept., she wanted to do immeditate surgery but I wanted to postpone (work and such). So she did an MRI Oct 5th. That's when we found out the mass had shrunk and thats where the fluid in my abdonmen came from.

I was suppose to have another MRI on Jan 29 but cancelled.

My hormones testing came back all normal, and actually all my bloodwork came back normal. After two years of slightly low lymphocyte levels, I was fnally back to normal. My MPV was slightly elevated and has been since then but nothing that is considered seriously abnormal.

The only thing really that was abnormal is my right kidney has shrunk and only works at 36%.

So no other information.

Yes I have my records.

Max Former Hodg...
Posts: 3701
Joined: May 2012

Sadly, it sounds like you are essentially getting nowhere regarding a diagnosis with your current doctors.  I would get a new gynecologist, find out what caused the ovarian cyst, and proceed from there.

To repeat from before, ovarian disease could account for the night sweats.  I would demand some straight and clear answers.  No one has discussed ovarian cancer, but it is ordinarily much more deadly than lymphoma -- another thing worth ruling out.

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

if the gyn onc wanted to do surgery there must have been something on one of your scans that

triggered that response. A followup MRI was ordered for you to try and better define what this mass is.

 I think getting the test done makes sense. Then seeking GYN care as a starting point. That could mean a

regular gynecologist. You did not mention anything about tumor markers. Evaluating your other symptoms could well require other physicians input.

Good luck.

 

alittlelost
Posts: 6
Joined: Mar 2016

Actually being seen by a gyno onocologist is the ideal situation for this. Due to the rupture she felt it would be okay to wait. I do realize that the gyn issues can cause the night sweats and many of the other symptoms. I also know she told me when she saw the transvaginal ultrasound she felt it was an endometrioma, where the tech said he felt it was a cystadenoma or cystadenomacarcinoma with free fluid in my abdomen. The MRI showed it had shrunk to 2.1cm, so we figured all was good. The new MRI was to monitor the endometriosis, which I cancelled.

And yes I have a history of atypical endometrosis which makes me a bit more prone to gyno-cancers.

I've seen other doctors because I've had some issues prior to the ovarian mass. My father had polycithemia vera, and his mother is the one who passed from lymphoma. I need to add that it wasn't just her but several of her siblings as well (there were 13, 11 died of lymphoma and lung cancer, I don't know how many of each from which).

 No they haven't done any tumour marker testing, so I can't mention it. I don't know if my insurance won't cover it or not. It would be ideal to have the testing as we know no history of my mother.

We know my sisters (2) maternally related both had neurofibromas.

 

Max Former Hodg...
Posts: 3701
Joined: May 2012

The more you write, the clearer it is that you are very well informed regarding the gynolological issues you have been grappling with.  You mentioned insurance, and indeed insurance is often the real difficulty behind the scenes in getting doctors to 'figure things out.'. A PET scan would answer a lot of your questions, but PETs are ordinarily more expensive than MRIs, and often require biopsy proof of cancer, or at least a very strong clinical suspicion, to be insurance authorized.

A few years ago my mother-in-law had ovarian issues and it was determined both had to removed.  Prior to surgery she was still being told by the gyn surgeon that they 'could not know' if her issues were cancer until the pathology study after the surgery. She was around 75 at the time, and was understandably stressed.  Both were benign.   Them 'not knowing' made no sense to me, but taught me that answers are not always easy to come by.   

I am still of the opinion that a new doctor might be the best way to begin making progress, a doctor willing to find stuff out for money.

alittlelost
Posts: 6
Joined: Mar 2016

The problem I'm having is the gyno-ono is pushing the swollen lymph nodes off as something else. She told me yesterday to get a second opinion. The node has been enlarged since November and has gotten bigger. She told me the hip pain, and sweating weren't related to my mass. She's recommended another doctor and I"m going to schedule an appontment. I'm quite tired of feeling this way.

Max Former Hodg...
Posts: 3701
Joined: May 2012

Your doctor's comments to you beg the question of how can she can not know what is causing the night sweats, if she "knows" what "is not" causing them. In other words, logic requires that if you know the one, you also know the other.

Second opinions are usually best when they are not associates or partners of the doctor giving the first opinion.  If insurance or money will allow you to go to a gynocologist or oncologist who your doctor does not know or recommend, most commentators say that is better.  But any second opinion at this point seems better than none, based upon the treatment you have been given since November.   Me, I would introduce myself to the new doctor by saying, "I do not want you to tell me what is not causing my symptoms.  I want you to tell me what IS causing them." 

I wish you luck with the second doctor,

max

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