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Very Concerned

WorriedMom2
Posts: 4
Joined: Feb 2021

Hello everyone. I have found myself on this website for HOURS reading through all the forums looking to relate to anyone and hopefully get some positive answers. I decided to finally make an account of my own and make my post. I will TRY to keep it short, but I have A LOT of information so if you read through it all- thank you in advance. I appreciate ANY and ALL information, advice, etc. I did join another forum website a few weeks ago but am looking to hear from more people that can relate and maybe even help someone else that stumbles upon this website late at night as I did. 

 

5 weeks ago to this day I noticed a large lump in the crease of my thigh on my pelvis. I waited over the weekend to see if it would go away- it never did. It was not/is not painful. It is hard and unmoveable. Fast forward to the following Monday I contacted the doctors and told them about my lump- they wanted me to be seen right away and I was in the office that afternoon. Apparently, they thought it was an abscess of some sort over the phone, and were surprised when they found out it was a lymph node. Ironically that same day I started to itch that morning. HEAD TO TOE. Itching NON STOP. They told me to wait a few days and see if it went away. I called later that week to inform them the itch was so bad it was waking me up in the middle of the night. I was breaking open my skin because I itched SO badly. No rash, no redness, no dry skin... Benadryl did NOTHING for me. For some odd reason, they referred me to a dermatologist (that appointment is still a month away). 

The other symptoms I am having:

I have had fatigue and upper back pain for ???? a LONGGGGG time. I chalked both of those up to being a mother of two, working full time, and being a full-time student. 

In December I had a transvaginal and pelvic ultrasound done for EXTREME bloating with lower abdominal cramping- it looks like I am pregnant, and that still persists. 

About a week before I noticed the large lymph node (January) I had three glasses of wine, which I haven't drunk in over a year due to heart issues I have. The next day I was VIOLENTLY ill. I couldn't keep ANYTHING down. If I even sat up I would get the spins and would dry heave. ALL day. from about 10AM-3PM.  I have NEVER been like that. I do notice that people mention lymph node pain, but trying to think back to then I don't remember that? Maybe some abdominal pain- but I thought I had food poisoning but never had diarrhea and it only later those few hours. 

I already mentioned the itchiness and swollen lymph node. 

Recently for about 10 days now I have had bad leg pain in BOTH legs. Thigh pain and sometimes calf pain that gets worse at night. 

I now also have lower back pain which has been going on for a couple of weeks, almost feels like bad menstrual cramps as well as feeling extremely full after eating a small amount of food. 

Fast forward to the present day. I have had 2 CBCS, 2 CMPS, and TSH. As well as transvaginal ultrasound, the soft tissue ultrasound of the groin, urinalysis x2, chest XRAY, pap/pelvic, and STI test. All normal.

My soft tissue ultrasound of the groin was of the actual lymph nodes. The size of that lymph node was 2.2 x .5 .x .7 CM and a second lump measuring 6mm. Then on the right side of the groin, there was a lymph node 1.4 x 1.3 x .6 CM. The dimensions are the ONLY thing listed on the report and at the bottom, it says: Normal lymph node, no abnormal mass or fluid collection is evident. But I was confused by this because I thought the only way you can deem a lymph node as normal is through biopsy, in addition to the fact that the node is 2.2 CM, and dr.google says anything over 1 CM is concerning. I also was reading up on that, they mention the short axis being the most concerning? I am assuming that is the second number listed the .5? I'm not sure if anyone has experience with that terminology. 

 

I think it is also notable to mention that I have a family history of lymphoma, leukemia, leiomyosarcoma, esophageal cancer, breast cancer, liver cancer, and skin cancer. 

 

I have spent many nights over the last month CONSTANTLY researching and googling all things lymphoma, I do have really bad anxiety and depression and I definitely have health anxiety. I have two young children that I have to be here for, and I just feel like something is not right. 

 

I have a DR appt Friday with the NP if I can make it in there (work permitting). They said no further tests/referrals will be made unless I am physically seen in the office. Last week I was supposed to have my follow-up but the doctor canceled an hour before due to a family emergency, I tried to reschedule a televisit but they insisted I must be seen in the office. 

Does all this sound concerning to you? Should I push for more testing? What testing should I ask for? FNA Ultrasound? CT scan? Referral to a hematologist? Watch and wait? I just don't like that this node has been present for AT LEAST five weeks (who knows how much longer prior to me noticing it). 

 

For what it's worth, I had an abdominal/pelvic CT w/wo contrast in September 2020, that showed no issues with lymph nodes. 

 

Thank you for taking the time to read my post! 

 

 

po18guy's picture
po18guy
Posts: 1156
Joined: Nov 2011

Sorry to hear of your concern. I certainly hope it is nothing malignant! However, there are actually far worse diseases than cancer. For example, a retired co-wopker just succumbed to ALS (Lou Gehrig Disease). Zero treatment. Zero hope. My thoughts, for what little they are worth: 1. We have tons of groin nodes because the human body is subjet to infections in that area.  Up to 1 cm is considered normal. When reacting to infection, they may expand to 2-3 times their normal size - and not return to normal afterward. 2. Finding a node and equating it with possible cancer is a stressor. Stressors can cause itch, chesrt tightness, hives, sweats, headaches and 100+ additional symptoms - all with zero disease being present. 3. Symptoms mislead. 4. Google only makes it fatal. 5. Doctors listen to symptoms, but look for signs. Physical evidence of a disease process. Big difference. Symptoms with no sign of disease "may" point to psychosomatic conditions. 6. Ask your family if you are anxious. You stand a fairly good chance of having some form of anxiety, as one in five Americans suffer from anxiety. If that is the case, the good news is that it is 100% treatable and almost always without drugs.

Nevertheless, have doctor perform diagnostics as is deemed prudent. And please trust and listen to docor. See another doctor if you think it best. Could it be cancer? Yes, it could, but is not likely. Still, best to report additional or worseming symptoms to doctor and proceed from there.

WorriedMom2
Posts: 4
Joined: Feb 2021

 

Wanted to update. I still have swollen lymph nodes. After seeing a dermatologist for the itchy skin and another OBGYN - My doctor finally referred me to both a hematologist and a general surgeon. My appointment with a hematologist isn’t for a few more weeks but I saw my general surgeon today. She felt lumps in my armpits as well more in my groin. She ordered a stat CT scan of the chest, abdomen, and pelvis. She also ordered a stat needle biopsy of the original enlarged inguinal lymph node. She offered just having me completely remove that lymph node, but I opted for the less invasive route to start with. Now I’m second-guessing if I should have just gone with the full-blown removal. Also trying not to panic. My itching has subsided and it only seems to bother me periodically which is a huge improvement from having it constantly all over. Other than that no other symptoms really. Still periodically getting the bloating, headaches, and fatigue. The only new symptom I have is two patches on the same exact spots on my forehead on each side of a cluster of what looks like pimples. I have never really had an issue with pimples and I m almost 30 so I’m not sure what going on there. They’re just red bumps, they don’t really have a head which pimples do. And I have been washing my face but they seem to be getting worse. Anyways, just wanted to update and converse with others about these issues because I’m really scared and have been - I have been dealing with this for almost 3 months now with no answers, but it seems like answers are getting closer to me. No weight loss. No night sweats. Praying and hoping for the best.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3602
Joined: May 2012

Worried,

I had advanced, bulky-disease HL, diagnosed in 2009.   SInce 2010, I have been N.E.D.

A few months ago, a surgeon removed a tennis-ball-sized node from my axillary, and a CT showed a host of enlarged nodes near it, as well as in the rear gut, and pelvic regions.  The result of the biopsy was BENIGN.   Swollen nodes do not ensure cancer.  Also, itching caused by lymphoma usually does not show any sort of rash on the skin, and usually has no welts or bumps.

An aspiration biopsy has some value, and is much better than no biopsy at all.   The main issue with aspiration bios is that they may not accurately determine STRAIN of the disease.   Always, when this is the case, the pathologists will realize that they need a fuller sample, and request excise.  For now, be happy and follow through with whatever the oncologist determines.

ShadyGuy
Posts: 628
Joined: Jan 2017

have you considered you may have shingles or some similar viral infection? There is a whole large group of viruses which could cause these symptoms. My nephew had somewhat similar symptoms which were finally traced to a tick bite. My brother-in-law had Lyme disease which caused a host of symptoms including itching, fatigue and many swollen lymph nodes. Lots of possibilities other than cancer. I sympathize with your struggles. Good luck in getting an accurate diagnosis soon. Not knowing is very hard.

WorriedMom2
Posts: 4
Joined: Feb 2021

Thank you both for your replies. I have had the swollen nodes for 3 + months now and finally got my CT done Monday. They put off biopsy until CT was completed. I got my results today and they showed nothing. Nothing at all. However, myself and my doctors can all feel the lymph nodes in my groin-  there are 4 there as well as an enlarged node in my armpit. I am waiting for my surgeon to call me about the results but I am so confused as to why they were not seen in the CT scan. At the U/S they were 2+ CM large. How could a CT have not shown this? Has anyone with lymphoma had a history of negative CT scans? Itching is still terrible - but again I don't have rash, redness. bumps etc. I am not sure what this will mean for my biopsy. I also see my hematologist for the first time Monday as well. 

ShadyGuy
Posts: 628
Joined: Jan 2017

CT with contrast? If so it sounds like you may be home free for now. Congratulations!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3602
Joined: May 2012

WM2,

It sounds like the enlarged nodes went away spontaneously.  If so, they were due to infection or some sort of immune system reactions.   I have never heard of someone being biopsied for lymphoma with no lymphadenopathy (enlargement) showing on a just-completed CT.  It likely would not be considered clinically justified by the surgeon or the insurance companies involved.   Most likely, based on what you shared here, there will be no biopsy.  A surgeon cannot remove what is not seen. 

Immune system flares are commonly slow to resolve, and the three months you mentioned is characteristic.  In some cases, nodes remain flared for much longer than that.

Also, about two years after I ended chemo, I felt a largish node in my neck.  My oncologist saw me the next day.  When he began the exam, I asked "Do you feel it ?"  He said, "I sure do !"  Then he added, "But it is not a lymph node.  It is a salavia gland.   Forget about it.  We are done here."   Lymphoma does not 'hide' -- it is proud to show itself.  Leukemia, another story.  Please share whatever the hematologist tells you, if you are so inclined,

max

 

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