Multiple symptoms of lymphoma (or something else) for over a year... Please help!

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I am a 19 year old female and I am genuinely worried that I may have lymphoma or something similar. I have had increasingly worsening symptoms over the past 2 (or so) years. My doctors (including haematologist) have told me they don't know what it could be as many of my test results are contradictory. I have had anxiety for my whole life, so I know in myself that my symptoms are not, at least solely, due to anxiety. I feel like such a hypochondriac, but it's getting to the point where I can't ignore it anymore. I'm sorry that this is lengthy, I would really appreciate any advice at all.

Symptoms (in order of occurrence)

2 years ago - 1.5-2cm painless, immobile, hard lump on base of skull (occipital lymph node?)... have been told it is many different things - which makes me nervous! It has grown little since that time. Ultrasound was unclear. Also one posterior auricular is a little enlarged. 

1 year ago - hard, bone-like (small amount of soft tissue) lump ON clavicle bone. Painless, attached to bone itself and has grown, but very slowly. My most recent opinion was that it was 'strange' as the doctor felt it. But x-rays were again unclear, as they only showed the front-on angle and it sticks out from the side only (hard to explain).

From this point, I have had the following symptoms:

- Severe anemia - had to get iron infusion 6+ months ago in hospital as my body was not absorbing any at all. It has been okay since then but I am still taking high dose supplements. 

- Frequent infections, around every 2-4 weeks including: pink eye, tonsillitis, parasitic infection, colds, oral thrush (from using asthma corticosteroids which I have used for many years without issues) etc. etc. 

- Frequent fevers, chills, and flushing (daily or every couple of days) ranging from 37.5 - 39 degrees Celsius.

- Night sweats weekly / every couple of weeks, wake up in the middle of the night sweaty and feverish. 

- Nausea I have reflux though, and have been taking PPI for reflux for 3 years but getting much worse despite increasing dosage. 

- Breathlessness

- Weakness, fatigue feeling very exhausted, sleeping a lot more than usual - and I actually like to wake up early!

- Itchiness without a rash, happens in bouts, but not very often. 

I just feel like something is really not right...

Blood tests: very contradictory. I have existing gastric inflammatory problems. 

- CRP 5mg/L (0-6)

- ESR 2mm/hr (0-20) - 

- Anemia (had iron infusion)

- Hypocalcemia but normal Vitamin D (despite taking supplement)

- EBV positive for past exposure 

White cell counts have all reduced a lot over 1 year (used to be on the high end), but no doctors have said it's an issue...

Neutrophils 2.2 (2.0-7.5)

Lymphocytes 1.5 (1.1-4.0)

Monocytes 0.4 (0.1-1.0)

Existing eosinophillia

Basophils 0.04 (<0.21)

I am just worried because my symptoms are getting worse daily. My doctor originally said she was considering the possibility of lymphoma or leukemia...

(I don't think you would scare a patient unless you were serious) but when I said I had anxiety (to prove to her that it wasn't due to that), she changed her approach. I returned so much with frequent illness that she has now reconsidered what it could be and I have been referred to an endocrinologist...

I really don't want to offend people who actually have been diagnosed, I am just searching for answers to see if anyone has had a similar experience and I wish you all well. Thank you for reading, any advice would be very appreciated. 

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  • Posted

    My wife had some similar symptoms. After six months of multiple antibiotics, steroids, and tonsil removal she continued to get sick. I took her to the emergency room where they gave her a CT scan which indicated a possibility of lymphoma.  She was immediately scheduled for a node biopsy and bone marrow biopsy which confirmed lymphoma.  Further testing revealed a rare form of T-cell lymphoma. Two years of chemo, stem cell transplant, clinical trials, immunotherapy, biotherapy and she is stable but unable to obtain remission.  You have the symptoms. Demand they test for lymphoma.  If they won’t tell them to put it in writing that you don't have cancer and then find another doctor.

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    • Posted

      Thank you so much for taking the time to read my long list of symptoms, and for your advice. My prayers and well wishes go to you and your wife, it must be very hard. I have booked another appointment with yet another general practitioner for tomorrow, and I will give her the piece of paper with a record of the fevers I have experienced over the past couple of months. I just feel oddly sick and my body has been telling me something isn't right... I am worried, but I am going to demand answers tomorrow. Thank you, again. 

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  • Posted

    First of all don't apologize for seeking help. It's a good first step for anyone going through what you're going through, especially at such a young age. You're also doing right by seeking help from a doctor however I would question if it's the right doctor. Have you seen an oncologist/hematologist? If not, schedule an appointment with one even if your insurance doesn't cover it or you need your general doctor's permission and she doesn't give it to you. Pay the office fee yourself in small payments because what's that cost in comparison to you possibly having lymphoma or leukemia or any form of cancer and not getting treatment for it right away. The sooner they determine if it's cancer or not, the better for treating it. Ask your doctor to do a biopsy of one of the tumors you described. That is the only for sure way of determining lymphoma. Blood tests and even scans are not "conclusive" for determining lymphoma. Leukemia is another situation but again, seek help from an oncologist/hematologist immediately. At your young age and as thorough as you are, you will be able to find out what's going on, you just need the right doctor. Lastly, you are at a good age for fighting cancer, especially lymphoma. Keep yourself well hydrated, eliminate toxins from your body especially sugar and dairy. Sugar is superfood for cancer...hands down. Try to exercise lightly and daily if you can. Do what you can to strengthen your immune system and ready it just in case it's determined you do have to go through cancer treatment. My 17 year old cousin finished her lymphoma treatment a year and a half ago and she's been in full remission ever since. If you have a parent or someone older who can go to the doctor with you then do it. You need support through this and someone a doctor will fear more and think about getting you what you need. Keep us posted! 

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    • Posted

      Hello, thank you so much for responding to my (long!) post. I am still experiencing symptoms and saw a doctor today for another referral... He thinks I just need to have another endoscopy or gallbladder surgery... I had episodes of throwing up and couldn't eat or drink for days and nearly hospitalised. I threw up just water / bile seven times in one day... I don't think it was a virus, because no one around me had anything and I didn't pass it on to them either. Hopefully it is some kind of immune problem and gallstones. I am getting worried, honestly. I just want some answers, or for someone to take me seriously. I have also discovered yesterday that the lymph nodes near my groin are swollen. I think that is due to a minor infection though, as they are painful to touch. Thank you, again smile

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