Today I had my Ultrasound appointment to look at the nodule on the spleen - and the radiologist couldn't see anything! She had a look on the CT scan to see where the original nodule was reported, and focussed in on that area, but said the Ultrasound wasn't picking up anything. She said the spleen looked entirely normal, and wasn't enlarged either, but she was none the wiser on what caused the nodule to appear on the CT scan.
So ironically, I'm now even more concerened. Looking up on Google, it seems unlikely that a nodule, however small, would just 'disappear'. The radiologist said that Ultrasound is really good at picking up things with fluid, so if it was a cyst, her equipment would have found it. Which seems to imply that, if it is still there, it is a solid mass.
I'm having another CT scan, from neck to pelvis, on Monday for an appointment with the hematologist 10 days later. I had more blood tests this week at the hematology clinic, phoned up for the results and was again told there was nothing concerning.
Yet I am still having multiple symptoms... a swelling feeling underneath my chin, drenching nightsweats, stiffness in the groin, occasional burning pain in the armpits and, in the last few days, lower back pain. And Lower back pain turns up on the list of Lymphoma symptoms - my GP frequently asked if I had it, and I never had until the other day, but I'm wondering is it stress, or is it yet another symptom of a Lymphoma or other serious illness they can't find.
I'm sleeping 2 or 3 hours a night - once I have to get up to change my t-shirt and pillows after the night sweat, I can't get off again, particularly now back pain has come into the equation. This is all getting too much, all I want is a doctor who can accurately tell me what is wrong with me and how it will be treated.
I've completely lost faith in the doctor who initially referred me for the CT scan. He said a) I have IBS - which I know I don't (no dihorrea or constipation) and b) my nodule was an accessory spleen. Today my radiologist said that was unlikely. It seems that doctor was just going for the easiest explanation to fob me off. I really hope this hematologist is more thorough. :(
Thanks.
Yes this npdule on the spleen has been one of the most worrying aspects, the scan on that is actually after the haematologist appointment, so I won't have anything definite to say. It would have been a load off my mind to have got this second scan sooner (hopefully clear), but they couldn't bring it forward. :(
Fingers crossed though.
I'm glad you're going to see a hematologist (no matter how you get there). Doctors don't usually refer patients to specialists just to appease them so I suspect he has some amount of doubt that it's due to an inflammatory process.
I wasn't very familiar with Amatriptylene so I did a little research online about it. It looks like it is used mainly as an antidepressant but it can also be used for muscle pain and neuropathy which is what you are experiencing.
Be sure to tell the hematologist about that lesion on your spleen as well as the obvious lymph node swelling, fatigue and night sweats. To me, these are all concerning symptoms that may point to a lymphoma, but hopefully I'm wrong. Please continue to keep me posted.
Hi again.
Well, my doctor has referred me to a haematologist for an appointment next week, but he still thinks it is an infectious disease. He is just doing this because I have pestered him about the possibility of lymphoma.
This weekend has been terrible, as I have had swelling and numbness below my chin, just above the start of my neck which for a few days also seem to cause my right hand jaw to feel 'clamped'. Now I just have the swelling and numbness - it feels that every so often, someone is injecting me with novocane at the top of the neck.
I went to the dentist to see if this was a tooth problem, he could find nothing that would suggest it was. He did find a cavity in my top row of teeth, but not too serious that would make my throat swell up so much. He did find a swollen lymph node in my throat area.
I have also found stuff online about 'numb chin syndrome'. Scared the hell out of me, although my numbness seems to emanate from the bottom of the chin into the neck, not localised to chin and bottom lip, although the tingles sometimes reach the chin.
I asked the doctor if he could prescribe something to help, he has prescribed Amitriptylene, but I have decided not to take it, as I have independent pharmacy advice that it doesn't do anything for swollen lymph nodes or the swelling around them, in fact actually can make such conditions worse. The doctor has been trying to get me on these tablets for a few months because he thinks I am 'over anxious' and he admitted they are an anti-depressant. I only agreed to take them because he said they would help my chin/neck swelling and now I realise they won't, there seems no point.
So I am grateful the doc has got me such a quick appointment, but not happy that he seems to be prescribing me anti-depressants under subterfuge. There is nothing wrong with my mental state that a solution to my lymph node problem/nightsweats will not solve.
As regards the 4-5 years, luckily I keep diaries so I've been able to look back and see what was going on.
November 2009 it started, pain in the groins which radiated down to the testicles, also in the armpits and occasionally in the jaw.
Epididymitis was initially diagnosed and antibiotics prescribed, but they didn't help. One appointment with a so-called urologist from Care UK was next to useless, he just said 'perhaps your pants are too tight, wear chinos'. Didn't bother looking at scans or anything.
A second urologist ordered an ultrasound of my groin in early 2010 but nothing was found. Shortly afterwards, after about 3 months, the pain went away unexplained.
This was why I left it 3 months after Dec 2013 before going to the doctor about the groin pain this time. I was strangely reassured by the fact that I'd had it before, but after reading some things about NHL now, I'm not happy at all. This has gone on far longer, and is more painful than the first lot, except no pain has gone down to me testicles. I remember the pain there in 2009 was excruciating. I had to leave a Christmas party and was doubled up in the car because of it. None of that this time.
Both times, Drs have visually checked testicles and found no sign of cancer there.
Hi,
My ultrasound of the spleen is on September 19th.
As regards a biopsy, it hasn't actually been organised, the doctor said that he will speak to a haematologist, who may think that a referral and biopsy will be useful.
Very uncomfortable at the moment with a stiffness/swelling just below my right ear, along with the usual stuff. Just waiting for the doctor to get back to me (hopefully today) with details of what the haematologist said.
Thanks again!
I'm glad to hear that you got a second opinion. Better safe than sorry. Hopefully, it is some sort of inflammatory process, but that too seems unlikely over the 4-5 years. Did he say anything about the lesion on your spleen?
Keeping my fingers crossed for you that your biopsy comes back with good news. Please keep me posted.
Thanks for the reply :)
Today I saw a second GP who said that yes, I do have swollen lymph nodes right now in the neck/jaw and armpits, but only slightly, and like the first one, he said that they felt reactive rather than malignant.
I also had a blood test which showed normal white cell blood count (which he regards as another point against Lymphoma) but high inflammatory markers - but no indication as to why this is.
The two doctors are going to confer and get back to me tomorrow, all I have right now is stronger painkillers. But the second doctor said he doesn't *think* it's lymphoma, tho can't be 100% sure without a biopsy of a swollen node. Biopsy of a node in my neck sounds scary, but if it's the only way to get to the bottom of this, I'll have to do it.
He mentioned a virus called toxoplasma, which is a kind of food poisoning, that can last for months and months, possibly years. He thinks I would have been a lot iller sooner if I'd been carrying NHL for 4-5 years, so hopefully he's right.
Okay, thanks for clarifying about the CT's. I'm not sure it's really possible to tell the difference between an infectious node from a malignant node just by feeling it, but perhaps he's referring to it not feeling hard, rubbery and painless which is more indicative of a malignancy.
I hear your concerns, but after thinking more about your case, one thing that keeps coming to mind is that malignant cells continue to multiply and multiply...causing lymph nodes/tumors to continue growing, not shrink and go away as your CT scan shows. I would think that if you really had lymphoma, the lymph nodes would be obviously bigger on the CT and by palpation, even with an indolent type of lymphoma.
Still, the lesion on your spleen, the fatigue and the night sweats are concerning. Hopefully the ultrasound will help shed some light, but if not, perhaps he would be willing to consider a PET scan. Normally, PET scans are done after someone has been diagnosed with Lymphoma to see if and where the cancer has spread, however, in your case, perhaps it would shed some light on that spleen lesion. It would also show any malignant lymph nodes if you have any. With a PET scan, you are first injected with radioactive sugar. This sugar is attracted to malignant cells within the body and the scan will light up the areas where the sugar has collected. The brighter the area (called SUV's), the more concentration of cancer cells in that area.
Thanks for the reply, very kind.
Perhaps there has been so much going on I haven't explained myself clearly! :)
I had a CT scan in May this year. The doctor had already felt the nodes in March and said that at least one was swollen on the left side, possibly right also, but they felt more 'infected' than malignant.
The CT scan showed no swollen nodes in the groin or abdomen, and when the doctor felt the groin again, he agreed with the scan that they had gone down. Yet I was still aching in the area.
My worry is that he is relying too much on a) blood tests, b) one CT scan and c) no weight loss to assume that it isn't lymphoma. And I have been feeling very much worse in the last 6 or 7 weeks since I last went, so I do need to see him again and ask.
I'm worried about the nodule on the spleen seen on the CT scan, which was at first dismissed as benign, yet 3 months later, the hospital suddenly want to see it again on ultrasound! All this has happened since the doctor's holiday, so it isn't like I'm constantly telling him the same thing. I'm thinking maybe if they ultrasound the groin at the same time, there feels so much aching etc there must be something to persuade him that a biopsy is necessary now.
What has totally confused me is that these are exactly the same symptoms that I had five years ago, yet they've lasted 8 months so far and not just 2 or 3 like last time. So the doctor being so sure it's not malignant seems complacent to me :(
Hi Runo. Boy you've got quite a history and I can understand your frustration. The way I read your post, it sounds like you had one CT back scan in 2013? If that's correct, I don't see how your doctor can say that your lymph nodes have shrunk without a second CT for comparison. Do you happen to have a copy of your CT report? If so, does it mention anything about being a reactive lymph node or having fatty hilum?
Painful lymph nodes are not usual for Lymphoma, but Lymphoma is not a cookie cutter type of disease either. You are correct that a biopsy is the only definitive way to diagnose lymphoma and that it is possible to have normal blood work and still have lymphoma. This happened to me.
With your symptoms of extreme night sweats, fatigue and swollen nodes, I think a biopsy would be the next reasonable step. If your doctor doesn't agree, I think I'd be inclined to seek a second opinion. I'm not sure if your abdominal problems/diarrhea/blood is all part of the same problem or a separate problem, but either way it's obviously been going on too long and isn't going away on its own. I hope you are able to get more concrete answers soon.
Just to add, the aching in my groin went away after the initial problems in late 2009/early 2010, came back last Christmas, and have been there - to varying degrees - ever since, but until recently not serious enough to cause great problems, just a dull ache. Now I feel it whenever I even move and it's the first thing I notice when I wake up.