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New Member - Suspected Hodgkin's Lymphoma *long*

Kittyheadbutts's picture
Kittyheadbutts
Posts: 4
Joined: Apr 2017

Hello, new here...and very worried. I suspect I have Hodgkin's Lymphoma due to my symptoms. I am 36 years old and female. My symptoms include: night sweats, itchiness, swollen achy lymph nodes in armpits post alcohol consumption, constant achy cervical neck lymph nodes, intermittent swollen lymph nodes in groin, chest pain behind breast bone, low temperature to mild fever, "hot flashes" during the day with profuse sweating where it seems like heat is just intensely radiating out of me and nothing I do seems to cool me down, extreme fatigue...probably more I am forgetting right now. All of these symptoms have been going on for a year or more. What prompted me to do research is when I recently had bilateral swollen axillary lymph nodes after a couple glasses of wine (usually it is in one arm or the other, more often in the left) and the fact that it has been happening for about a year now. I have brushed off the other symptoms for a long time thinking they were due to my other conditions i.e. Celiac Disease, IBS, Premature Ventricular Contractions, and Fibromyalgia. Now I'm wondering if they are all related. If I've had lymphoma for a year wouldn't I have very large consistent lymph nodes by now? Maybe I'm atypical? I also had one episode of Atrial Fibrillation about a year ago (at age 35!) and recently started thinking if an enlarged thymus might have caused it. I had had a single alcoholic cocktail prior to the afib starting. The afib lasted 8 hours with medical intervention. Chest xray and echo were performed, all normal.

I have a doctor's appointment on Wednesday to address all this but I'm apprehensive that my doc will think I'm a hypochondriac and not take me seriously. It seems I have all the symptoms except for weight loss. I am having so much anxiety over this I can barely eat or sleep. Any advise would be greatly appreciated. Thank you!

po18guy
Posts: 1046
Joined: Nov 2011

There are numerous autoimmune conditons that can produce the same symptoms as well as an abnormal hormonal condition. If one's immune system is malfunctioning, it can develop additional disorders which produce much of what you are complaining about. You report symptoms, which often cannot be measured or observed. Doctor looks for signs, which are objective evidence of a disease process. There are blood panels which can be run for the better-known autoimmune conditions, while an overall examination may point doctor in another direction, such as an endocrinologist. Scanning or other imaging may need to be done, but at this time, worry over cancer seems premature.  

Kittyheadbutts's picture
Kittyheadbutts
Posts: 4
Joined: Apr 2017

Thank you so much for your reply and for solidifying the fact that I feel like I am jumping the gun on suspecting lymphoma. I feel better knowing that all my symptoms don't necessarily add up to cancer. It will be interesting to see what my doctor thinks tomorrow or if she blows me off like other doctor's have in the past. I will push for auto immune and hormonal testing. Thanks again!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3384
Joined: May 2012

As Po informed you, a variety of things could cause many of your symptoms, and you may well have a multiplicity of issues. But it seems to me like several of your symptoms are most likely lymphoma.  Do not  guess at this, be tested. The blood panels, and even a biopsy, ate quite inexpensive compared to most other procedures in oncology.  I cannot imagine going a year with this assortment of symptoms and not being checked out for Lymphoma.  

You ask about how your nodes have presented, and how they seemingly come and go. People report a very wide range of experiences in getting diagnosed.  I was diagnosed with widespread, Stage III disease. But at diagnosis I had never felt an enlarged lymph node in my life. I still haven't ever felt a diseased node, ever -- before or since. So how or when a node enrlages or shrinks is not a question that I find compelling for or against Lympoma.

max

po18guy
Posts: 1046
Joined: Nov 2011

Max and I balance each other. I am a T-Cell Lymphoma patient, and that is worlds apart from B-Cell, which is by far the most prevalent. The only lymphoma which I know to "wax and wane" is Angioimmunoblastic T-Cell Lymphoma, a rare sub-type in the T-Cell realm. Several B-Cell Lymphomas are slow growing and can present with enlarged nodes that just sit there, or which grow. To the best of my knowledge, Hodgkin's generally grows, as do other lymphomas. The fact that your sweats are during the day  is what lead me to suspect a hormone problem, and that is easily checked. If your levels are fine, then it is appropriate to delve further into other conditions. 

Kittyheadbutts's picture
Kittyheadbutts
Posts: 4
Joined: Apr 2017

Thank you both for the feedback. Max, may I ask what your symptoms were if no enlarged lymph nodes or was your diagnosis incidental? I feel like I've had most of these symptoms for years, except for the swollen lymph nodes which have been the past year and I've had all sorts of tests run including hormones and nothing abnormal except slightly elevated A1C one time (tested in the normal range since). Today I had nagging chest pain which might just be due to stress, who knows. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3384
Joined: May 2012

Kitty,

My primary symptom was profound fatigue, having to sleep ten hours a night in order to be able to get up at all, and yet still nodding off during the day. This profound weakness is probably the closest thing to a universal Lymphoma symptom.

Second, I developed severe chest pain, which was diagnosed at a local ER as unstable angina. I was transferred to a regional chest pain center, where they determined via imaging that my arteries were clear,  but I had massive nodes pressing on the heart. A later CT showed that I had masses from the lower neck to the groin/pelvic region, and across both auxillary regional . Numerous organs were totally covered with tumors (escophagus, spleen , heart).

I saw that you also have night sweats. Not much causes night sweats (during sleep) except Lymphoma and menopause.

Why would your doc think you hypercondriac?  Have you been fearful of serious diseases before that proved to be nothing ? Unless you have, he should not view your concerns as unreasonable.

Like PO, I would agree that cancerous nodes do not oscillate. Once a node (tumor) is full of cancer cells, they STAY there.  Blood pressure, fluid retention, might make them SEEM to swell and go down, but any such appearance is not from cancer increasing and decreasing.

You mentioned thinking that you have Hodgkin's Lymphoma. Be aware that the symptoms of Hodgkin's and non-Hodgkins are usually identical, and non-Hodgkins is vastly more common than HL. And both HL and NHL have their aggressive and non-aggressive subtypes.

Hopefully your doc will be willing to at least do a CBC and metabolic panel -- the absolutely cheapest initial tests for Lymphoma available.

max

Kittyheadbutts's picture
Kittyheadbutts
Posts: 4
Joined: Apr 2017

Wow, and are you in remission now? What a tremendous battle you have been through!

I thought maybe HL since, according to what I've read, is the form of lymphoma where nodes can be painful with alcohol consumption whereas with NHL this does not typically happen. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3384
Joined: May 2012

Yes Kitty I have been in remission from Lymphoma since 2010. Had a brief run-in with Stage II Prostate cancer, which is in no way related to Lymphoma.

I have never heard the alcohol-HL assertion, sounds apocryphal to me.  Good luck with doc visit, I hope it moves you toward answers,

max

 

po18guy
Posts: 1046
Joined: Nov 2011

Max, except for my Prednisone puffiness, we could be twins - in more ways than one....

Sal0101's picture
Sal0101
Posts: 127
Joined: Sep 2015

Hmmm, I'm not going to share my picture. Actually I won't take one. Prednisone puffiness is a very kind way of saying " my face/neck is swollen (quite a bit) , pulling, stretching and eyes are dry". Prednisone is a necessary drug, but somewhat evil. I'm not liking it at all!

I do think of the alternative though! 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3384
Joined: May 2012

Is that you Po ?  I initially thought you were George Clooney !

po18guy
Posts: 1046
Joined: Nov 2011

What, no Sean Connery reference?

lindary's picture
lindary
Posts: 684
Joined: Mar 2015

AAAARRRGGHHHH!!!  Aside from prednisone being a neccessary evil of treatment, I did like the rush of energy it would give. 

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