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littlemouse
littlemouse Member Posts: 4 Member

I just want to start by saying I appreciate that many of you are not health care professionals and I am not looking for a diagnosis from anyone and also I understand that everyone’s experiences and symptoms are different.

I am a 30yo(f) for the last few months I have been experiencing extreme fatigue in all aspects including excessive sleeping as well as feeling extremely exhausted and breathless during and after doing anything. I have also been having night sweats, rapid weight loss, intermittent itching (I probably wouldn’t have noticed this until research but since then I’ve noticed I do itch my legs a lot with no signs of rash)

i went to see my PCP a few months ago related to these symptoms and thinking that I maybe might be deficient in something or having some hormonal issues (blood panel within normal ranges)

I went away and then a few weeks later I noticed I was having a bit of a croaky voice and the anterior part of my neck felt tight which lead to me noticing some swelling around the front of my neck. I couldn’t really pinpoint the exact point but the whole front of my neck looked like the shape of a small football. I then reached out to my PCP again and she said she would repeat blood tests including TSH and t4. She did notice the swelling when I visited and said she thought the swelling may be coming from the lymph nodes. Blood panel again came back within normal range and was advised to consume more calories (again reiterating that I had no deficiency or symptoms of malnutrition and infection markers not raised as well as not obvious signs of me having any infections).

so I thought okay and attempted to consume more food and be more active (which at this point was proving impossible I was struggling to even walk my dogs which had been something previously I would describe as leisurely and enjoy)

within the next few weeks I noticed some enlarged lymph nodes one on the left side of my neck (marble sized) and one at the back of my head (cherry tomato size). So I reached out again and after a few back and forths ordered an ultrasound.

so this brings me to now. I went for the ultrasound at the beginning of the week, I wasn’t really happy with the sonographers treatment of me but that’s irrelevant she was just very dismissive. She stated that my thyroid/anterior neck did not look swollen and didn’t scan (she was only to be scanning problematic areas) I was booked in for a head and neck ultrasound so I assumed maybe wrongly that they would be scanning everywhere and then just paying extra attention to the ‘swollen areas’. So anyway I pointed out the lymph node on the side of my neck and she scanned it and then said and where’s the other one so I said at the back of my head so I led face down and she was moving around so I asked if she found the lump okay to which she replied it’s a lymph node. I was like oh ok!!

I've been experiencing some pain in my shoulder and then over the weekend the pain radiated down my arm causing numbness to my hand with some pins and needles in my fingertips along with some stabbing chest pain when breathing in and leaving a prickly pain in my chest. (Relevance??!)

so my PCP received the report today which is very vague to say the least. No sizes stated for the lymph nodes, nothing mentioned about the one on the back of my head (I would guess as being an occipital lnode) and nothing stating that my thyroid looked okay. The report states L neck subcutaneous lymph node no signs of swelling or mass.

so my PCP provider has responded again saying due to my weight loss and my BMI being under 20 it’s probably me getting more infections and having to subcutaneous fat to cover the lumps. Now at this point I’m getting a bit frustrated as my weight loss has been completely unintentional so I just sort of replied saying I wasn’t really happy with this as I’m not deficient or malnourished and I’m still experiencing everything I’ve been complaining about for months and still no infection has showed up and these 2 lymph nodes are still swollen after 2 months. She has agreed to meet with other professionals to discuss my case.

Thank you so much if you made it this far I thought it was important to give some background. So really my question is has anyone else has normal blood panels and an ultrasound that would be described as normal but still gone on to be diagnosed with lymphoma? Obviously this is the last thing I want and if there was another explanation as to all of this I would be happy to accept but at this point I’m not really being given anything and I’m struggling to live my life daily. I have 2 small children that I’m struggling to get out of bed for and get to school in the mornings. If I could forget about it trust me I would but it’s consuming my life.

Comments

  • po18guy
    po18guy Member Posts: 1,487 Member
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    Sorry to hear this. Have you been vaccinated recently? Did you notice that things got worse the more you paid attention to them?

  • littlemouse
    littlemouse Member Posts: 4 Member
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    Thank you for replying! No not been vaccinated recently. I’d say no as I’ve been trying my hardest to just get on with my life hoping that things would improve. My bloods have ruled out many concerns including thyroid related issues, viral and bacterial infections and autoimmune (ANA) was negative. So I’ve kind of just been hoping that things may start to improve but as they haven’t lymphoma is kind of the last thing I’m questioning now. Although i know it’s a possibly that it definitely might not be I’m just wondering if bloods and a ‘normal’ but vague ultrasound being clear is enough to divert me from thinking this and possibly explore another avenue or to push for maybe more investigations for it.

    although I feel there’s not much left to investigate I don’t want to be that patient that doesn’t accept what health care providers are telling them because I do totally respect their professional training but at the same time the more I’m trying to ignore and live my life normally the harder it’s becoming. Lymphoma or cancer in general was never on my radar originally when I first went in to talk about my symptoms so I don’t think I’ve convinced myself of my symptoms (trust me I’ve thought it myself) to be honest I still think there could be another explanation but I also don’t want to be naive and think it would never happen to me.

  • po18guy
    po18guy Member Posts: 1,487 Member
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    Cancer generally produces very specific symptoms and it progresses. Your symptoms are very general. I say the following for good reason. Are you an anxious person? Worried about various things a good percentage of the time? Ask your loved ones, ask your doctor if you are anxious. They will be truthful. I ask because anxiety is truly epidemic. One in every five today suffers from some form of anxiety - 64 million in the USA! Anxiety can produce over 100 symptoms of actual disease - with no disease present! And the symptoms keep piling up.

    If not, then keep in contact with doctor.

  • littlemouse
    littlemouse Member Posts: 4 Member
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    Yes I totally agree with you I think there’s many other things that it could potentially be. It’s just hard to say to a practitioner who’s covered the basics and all is ok that I still feel awful and it’s not going away!

    No in general I wouldn’t say I was an anxious person. I’ve never worried about my health at all I’ve always been pretty fit and healthy so never become overly concerned about being unwell or anything along those lines.

    Even now I could ignore the swollen lumps as they’re not causing me any discomfort and the night sweats and things like that I could live my life normally with them. It’s just the complete exhaustion that is not letting up and not allowing me to put it in the back of my mind! I don’t feel anxious for an answer and if I could be given a remedy to not feel so wiped out I genuinely think I could just carry on with my life without an answer.

    but I say that as I’m here on a forum looking for support so it’s definitely front and center of my life currently so probably is bothering me more than it should be.

    i guess I was hoping or expecting people so say their ultrasound’s definitely knew that their lymph nodes were suspicious and in that case I could rest my mind and move on from this line of thought.

    I appreciate your sentiment and I will definitely keep check to try and avoid it consuming me and leading to potential anxiety!

  • ShadyGuy
    ShadyGuy Member Posts: 913 Member
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    A coward dies a thousand times before his death, but the valiant taste of death but once.” 

    -Julius Ceasar (Shakespeare)

    The more you say, the less people remember.

    -Francois Fenelon

    There is power in brevity,

    -Moi

    There’s a great power in words, if you don’t hitch too many of them together.

    – Josh Billings

  • littlemouse
    littlemouse Member Posts: 4 Member
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    Point taken! It’s always been a downfall of mine waffling is my thing

  • po18guy
    po18guy Member Posts: 1,487 Member
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    Naturally, it could be some form of malignancy. And, just as naturally, we tend to go "on-point" when we suspect something. However, doctor seeks to eliminate other causes first. And, some lymphomas are very slow growing and patients have them for years - even decades. A phrase you might think of is: "It is not cancer until a pathology report says it's cancer." It helps maintain sanity.

    As well, our immune systems are unbelievably complicated and a malfunction in the immune system can produce virtually any symptom that we are capable of experiencing. Autoimmune conditions are difficult to diagnose, as there are 70-80 known conditions and literally thousands more which are unknown. As long as you are aware, just monitor those symptoms and note any changes or worsening. If you suspect that your primary physician is not aggressive enough, it is always advisable to seek a second.

  • Clara65
    Clara65 Member Posts: 1 *
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    I also had some of the same symptoms, lymph node enlarged in my neck, night sweats, and fatigue and my lab work was ok. My liver enzymes did elevate a few years later. My primary care doctor said they could biopsy it but I refused. Then about 5-6 years later I was diagnosed with Follicular Lymphoma. I don’t know if I would have caught it earlier if it would have changed anything, but I would have reached out to get a 2nd and 3rd opinion from different doctors. I have learned to advocate for myself now. Hope this helps because I did not understand my body when I was going through the initial symptoms.

  • thebeckers6400
    thebeckers6400 Member Posts: 13 Member
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    A CT scan is more reliable in finding potential Lymphoma than an ultrasound. My NHL could have been found a year earlier if everyone hadn’t been so willing to chalk my symptoms up to anxiety. I lost 12 pounds without trying (was not overweight) and felt pain in my stomach. Endoscopy found nothing. A year later progressive swelling of one ankle finally led to CT which found widespread nodal swelling pushing on my stomach, kidneys, IVC and small bowel. My life has changed forever now and the Follicular NHL is refractive after 8 cycles of G-CHop. New treatment is needed but opinions vary on how to proceed.

  • po18guy
    po18guy Member Posts: 1,487 Member
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    Chemo-refractory lymphoma opens the door to "off-label" use of other drugs, as well as clinical trials. I received Bendamustine and Carboplatin toward the end, although neither is specifically labelled for non-Hodgkin's Lymphoma. The re-purposing of existing drugs has lead to many advances in cancer therapy. As more is known about the mechanisms of cancer, more drugs are available which address that specific mechanism. As well, it is always good to consider a clinical trial. I am alive solely because of a clinical trial. If your facility does not perform research or conduct clinical trials, it is absolutely worth the time and effort to travel to such a facility.

  • thebeckers6400
    thebeckers6400 Member Posts: 13 Member
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    Thank you, I started a new topic on R2 experience since this is a longer older post. I’ve gotten one opinion from John’s Hopkins Baltimore but will go to another local expert.

  • po18guy
    po18guy Member Posts: 1,487 Member
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    Johns Hopkins is certainly excellent, but even among the top facilities, treatment philosophy varies. You want to find a good fit between your goals and their means of reaching those goals.