Hi, I thought I'd come here because I feel I'm slowly losing my mind with worry and I just don't know what to do anymore. I've had ongoing worries about having cancer for almost 10 years now, and recently I'm scared to death and am losing sleep. I can't concentrate thinking about how I might die soon, how I'm not doing enough or how I've not done enough to get a proper diagnosis, how it's too late, how my Doctors seem to think I'm just a worrier and fob me off. This is probably going to be a long post. I don't know who to talk to and my Doctors barely have the time of day for me, especially during the pandemic. None of this is helped by the fact that I've had to change practices multiple times due to moving house, and I also don't often see the same Doctor because it feels dangerous to put all of your trust in a single Doctor who may misdiagnose you.
- My primary worry right now is one of the lumps I can feel all over my body. Towards the end of 2015, I noticed what felt like a significant lump growing in one of the cords attached to my testicles (or perhaps the veins), not on the testicle itself. It hides itself and is roughly at the right hand side of the base of my penis, in the scrotum itself. I've been to the Doctors A LOT about this, and normally they say they can't feel it, or it's part of my normal anatomy, or they feel something but it doesn't seem worrying. I've had 6 ultrasounds of this, and all have come back normal. But I'm worried that my lump is being missed, due to it being 'relatively small' (it feels at least about 5 cms in length to me at least, and maybe 1cm in diameter) and by the fact it moves about. It feels like it's slowly grown bigger over time. I should maybe be reassured by the fact it's never shown on an ultrasound and Doctors never seem able to feel it (though they only spend a minute max trying to). I am definitely able to feel it. I'm also concerned an ultrasound isn't enough - the lump could be being missed, and I feel like there must be a more detailed scan that could be done, or a biopsy.
Other concerns are:
- Ongoing bowel issues since around January 2011. I was only 18 at the time, but started noticing a change in my bowel movements (looser stools). In August 2011, I went to the Doctors because it was starting to bother me and I was worried. In my visit, I got told I was young and it was probably IBS, and nothing more was done. I've been to the Doctors various times since then about this. More recently, I have episodes where I get a lot of discomfort in my bowel, or going to the toilet. I was able to have a flexible sigmoidoscopy done in May 2017, which all came back normal. I had a full colonoscopy in December 2018, due to my symptoms getting progressively worse, which all came back normal - with the exception that my bowels spasmed during the procedure, which would suggest IBS. So I think I can rule out having bowel cancer.
- In August 2011, I noticed what felt like a lump in the left hand side just under my jaw/at the side of my throat. So, a short time later, I went to the Doctors. I was told it was probably just an enlarged lymph node, people get them all the time, and they stay around for years. Again, this lump is still there, and has been for over 9 years. I feel like it's changed a bit in that time, but it's not grown significantly, at least not on the exterior.
-Towards the end of 2013, I started having problems with my swallowing. Sometime around 2013, I also felt like I was starting to notice things growing around muscles and bones in my body, and what seemed like some new lumps on the other side of my jaw/neck. I saw a few different Doctors but the general response was always that I was worrying over nothing. After going to the Doctors about the lumps I could feel in my neck, I was referred to an ENT, who told me it 'could be cancer' and I was referred for an ultrasound. But that all came back normal. I had another ultrasound of this area at the start of 2018, due to noticing what felt like another lump in the side of my face, around where the end of the jaw is. It felt like a lump in a muscle, and it feels like it's slowly grown over time, but not significantly. This ultrasound of the area again came back normal - they noted a 1cm lump, but I think they just said it's a lymph node.
- Early 2014, I noticed what felt like on the right side of my skull, a lump was forming around the temple area. Since then (it's been 7 years), it feels like more lumps have formed on my skull. It started at that lump on the temple, and feels like it's spread to other parts of my skull, most noticeably on the right hand side. I started noticing my right skull slowly bulging out due to the various different lumps on that side, which seemed to appear one after the other. Whenever I go to the Doctors about this, I'm told they can't really feel anything. But I'm sure I can feel lumps, and that they've very slowly grown over time. What I don't know is if it could be cancer. Maybe they're very low grading and hence the Doctors don't realize it's cancer, because they're slow growing. And maybe they're growing inwards? They're not painful, at least, and my Doctors have told me that if they're not painful, they're not cancer.
I talked about the right hand side of my skull, but it feels like the same process is starting to occur on the left hand of my skull, starting in late 2016 and going the same way as the right hand side. What I mean is - a lump starting on the temple, and then slowly spreading to form more lumps around the left hand side of the skull. Does this sound like it could be cancer?
- It's hard to describe, but it felt like I had fatty tendrils wrapping around bones in my body, especially my collar bones and rib cage, but now I feel this all over my body, in my legs, etc. I went to my Doctors about this towards the end of 2014 where I was told they can't feel anything. I was also noticing lots of smaller lumps in other places in my body. I could feel small lumps in the fatty tissue on top of my bicep. Since then, I feel like I can feel those small lumps all over my body, in collections of fatty tissue and on top of bones. It feels like the ones in my bicep have slowly spread out over the area over time, and I can feel lots of small lumps just all over. But not many of them really appear THAT big, maybe half a cm max. Whenever I've showed Doctors what I can feel in my biceps, I just get told they're lipomas, but lipomas shouldn't spread out and feel irregular in shape?
- Around April 2016, I started to noticing weird issues with my breathing. It felt like on the right hand side, when I tried to take a deep breath, I was physically unable to do so - like something was restricting my breathing. I found that this feeling was more prominent when standing - when sitting down, I don't appear to have this issue, except maybe for a few hours every so often (could be related to what I've eaten/gas trapped?). I've been to the Doctors a few times about this - I had a spirometry test done in Summer 2016, which came back normal. I had a chest X Ray in December 2017 which came back normal. I've talked to my Doctors again in early 2019 about this, and have just been told they don't thing there's anything wrong, because of the results of the chest x-ray. I suggested because I've had growths around my bones and what feels like lumps in my skull that maybe my rib cage is restricting my breathing on that side, but I was dismissed. It feels to me like my right hand side rib cage is more 'swollen up' and prominent than the left hand side, in the same way the right hand side of my skull is.
- Around Summer 2016, while out one day, I started to feel like I was having twitches in my neck that I couldn't control. I thought it was nothing, but since then it feels like the twitches have got progressively worse. Originally I noticed it in just my neck muscles, that they'd twitch randomly, sometimes quite violently. It feels like other parts of my body are now suffering from random twitches, most noticeably my jaw will twitch while eating or talking, causing me to bite my tongue or mess up when trying to say a word. I also feel like I'm becoming more forgetful, struggling to recall words or names that I should remember, and getting my words mixed up a lot when typing. Whenever I've talked to my Doctors about this, they don't seem concerned.
If you're reading this still, any advice would be much appreciated. I feel like I'm going sick with worry. I feel frustrated that nothing more has been done other than some ultrasounds, a handful of blood tests, an x ray and a colonscopy. No biopsies or more detailed imaging has ever been done. I'm not sure if it's just because I'm a fairly timid person that I don't DEMAND to get the tests I want. I feel like having an MRI would answer a lot of questions and give much more detailed pictures of areas of my body I'm particularly worried about, but I don't want to waste anyone's time also. And whenever I've even mentioned the possibility to Doctors I've been quickly shot down. It also doesn't help that I have so many symptoms, it's hard to talk to a Doctor about them all in one go. I can maybe talk about one symptom per appointment before my time is up, and there's so much going on here.
