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Don't believe doctor!

Posted , 3 users are following.

emma93780
emma93780

So back in December 15 I noticed a lump on my neck if I tilted my neck to the left, it's about half way down on the side, of course panic struck and I went to see GP who arranged for me to have a scan, scan was 6 weeks later and as the day approached I was in a state of anxiety fearing the worst!! I had the scan, the sonographer was there ages checking all my neck and glands and said everything looked fine, it just looked like a benign lymphnode and there was nothing to worry about which was great however I haven't been able to settle since, I am still worried about it, I have been getting night sweats not drenching but uncomfortable but GP says it's my anxiety meds as it's a side effect which could be true, I also have an ache in my groin (both) but can't feel any visible lumps etc, I also have 2 lumps in the side of my breast which I have had checked out and they can feel them but upon scan there is nothing to see, I have had recent bloods and they want to see me to discuss results which is worrying me, I know I should be settled knowing the scans were clear but I can't and I don't know why x

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  • EssDee
    EssDee emma93780

    Posted

    Hi Emma, I accidentally came across your post while searching for information on my NHL.

    First off, I'm very sorry to hear your going through so much. Yes... it is very stressful and there is a lot of anxiety associated when you worry.

    When I was 35, I found a nodule in my neck on the left side, it felt like a tiny bee bee under my skin, it didn't hurt, I didn't worry at the time but kept an eye on it. A year had past and I began having drenching night sweats, (the type where I had to actually changed my bedding and clothing) I assumed I was having early menopause. Then I noticed my neck lump had grown... so large it looked like I had the mumps. (I never had the mumps, so I wasn't sure what it was) I made an appointment with my GP. I had been having issues with doctors, they never seemed to listen to me when I complained about various symptoms I was having, (I lost 2 little boys and they'd blame it on depression or anxiety, I'm also on anti anxiety meds). So this was a new doctor and my 1st female physician, I thought she might understand and be able to help me. When I showed her my neck she said, "oh it's nothing... you worry too much, your healthy, there's nothing wrong with you, your blood work is fine" (I had an uncle and aunt just die of different cancers and told I her I just wanted to make sure it wasn't cancer) She said rudely "Honey, if it were cancer you'd be dead by now!" That made me angry, and I said "listen I want to know what this is!" She replied "Fine! I'll send you to a surgeon and if he thinks it's something then He'll take it out!" I said "Fine!" ( yes... We were yelling, and I'm not an angry person, but I was getting upset that none of these doctors were listening to me because I was young and physically fit) Soooo... off to the surgeon I went. Luckily for me, the surgeon I got was one of the best where I'm from. (I live in the US, Western Upstate New York). He WAS concerned. He said it was because of the swelling. He sent me for a CT scan. It took a few weeks the scan showed a mass in my neck. He scheduled a Biopsy, because he said the ONLY way to determine if it's cancer or not is to do a Biopsy. It came back as CD20 postitve B cell follicular Non Hodgkins Lymphoma, (Cancer of the lymphatic system ) He sent me to a really good Oncologist who did a full scan, (neck, chest, abdomen and pelvis) That scan showed I had masses on both sides of my neck, spreading under my arms into my chest around my abdominal aorta and into my abdomen where there was a mass as big as a football. I immediately got rid of the doctor who told me "honey, If it were cancer, you'd be dead by now". And found a wonderful doctor referred to me by my Oncologist and had to start treatment for cancer. That was 16 years ago. Good thing I listened to my gut and not the doctor or YES, I would most certainly now be dead.

    I did my own research, stopped trusting just 1 doctor and have learned to get more than 1 opinion on treatments. I hope what you have (or don't have) is not cancer. Yes, it could very well just be an infection in your lymph node. But there is no real way to know without a Biopsy. (The Biopsy doesn't hurt and your mind will be at ease) Also as I mentioned, my blood work was fine. I still have follicular Non Hodgkins Lymphoma, there currently is no cure, but there are a lot of treatments that do help keep it stable and in check. Also, my Oncologist does blood work all the time, it's always within normal ranges. My Oncologist says my cancer presents as a typical... they don't know why. I get yearly CT scans and when it starts to grow again I usually have monoclonal antibody treatments of Rituxan and Treanda. Very few side effect ie: no hair loss etc.

    I wish you well, and truly hope it's not cancer. But, if I were in your shoes (I can relate) I'd ask for a Biopsy just to rule it out and make your stress and anxiety at ease.

    • emma93780
      emma93780 EssDee

      Posted

      Thank you for your reply and taking the time to message me, I went back to the doctors last week and he is going to refer me urgent to get another scan on my neck, it's a different doctor and he had a good feel and he seems to think nothing has changed looking back at my records etc shape size etc but he said for peace of mind he would get another scan and if that comes back clear then I really have to learn to accept what he says this time.

      It's just tough at the mo as I have ongoing issues with my breasts on the same side and my shoulder also hurts so monkey here is thinking that's it, that's what I got I know it's not necessarily a death sentence but I'm so stressed about it all right now I just can't relax I find myself prodding and liking seeing if I can find other lumps and I did last night above my color bone but it was the same on both sides so that must be normal, to look at you can't see the lump it can only be felt when I tilt my head to the left also so don't know if this is a good or bad thing.

      Thank you for sharing your story and I am sorry you are poorly it's not nice and I bet your sick of over sensitive people like me putting things up like this x

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