Lymph nodes/breast lumps

Thanks Linda. I tried to gwt an app friday and cpuldnt sp gling to try again monday. Lumps have literally only been discovered this week. U wanted to leave a gew days to reasure they are still there which they are. Back pain admittedly I have been putting up with and not wanted to made a fuss.

The lymph nodes in the neck are easy to spot as they stick out and feel pit of place. But I'm terms of the breasts...it just all feels a bit lumpy and I can feel several nodes. I just don't know if that is normal?

I really can't tell you if that's normal.  That's why you probably need to see a doctor.  I'm hoping that you can get in to see one soon...

Me too. Thanks Lynda. I know everyone is different. I think my plan of action is to get the gp to inspect and see what they think!

Please let me know how you get on!

So Lynda mixed bad at the doctors. Back pain I have been referred for physio. I have to go back in 4 weeks. I am having urgent bloods this week on account of the night sweats.

Lumps they are undecided on. Breast lumps she says are fine and not any concern. Lymph nodes in neck she said at first she couldn't feel. But was literally gently touching my neck and from the front. She asked me where they where and then when I showed her she felt from behind and agreed she could feel and they were slightly swollen. However, she didn't think they were hard or big enough to cause concern. But nevertheless wants to discuss with another doctor and is going to call me tomorrow to see if I should go for an ultrasound scan on the nodes. I figured at least if something is sinister it will show up on my bloods?

I would hope that the blood tests would show something!  Sometimes, when you don't feel well, it takes a while to find out what's going on.  

But you took the first step towards that goal, and that's good!  Please let me know how things progress!  I'm thinking about you! xx

Thanks Lynda it helps to talk about it! I'm probably less worried about lumps now...but I would probably prefer an ultrasound just to be sure. My back pain is really what's getting me down as it's impacting on sleep/mobility. It maybe totally unrelated but we will see. Xx

Hi Lynda

I thought it is only right for me to update you as to where I am up to. Quite a scary time at the moment. My bloods came back normal but they didn't do inflammation markers. Since then (5 weeks has passed and the following has happened):

Nights sweats have started and increased in frequency

Lymph node in neck is still swollen and there is now another

2 lymph nodes have appeared behind my ear and are hard and rubbery

My left groin has swelled can't feel a node but it is looking noticeably bigger

Back pain and pelvic pain

I went to the doctor today and she is not happy and has sent an urgent referral to haematology as she suspects lymphoma. She said the groin swelling is a hard mass.....but it's not a hernia she said neck nodes alone aren't concerning they are there but they shouldn't be (they don't feel hard) the ones behind my ear shouldn't be there and are hard and one is quite big and noticeable...she had said that are suspicious as there is no sign of infection anywhere.

I have been referred hopefully to have a CT scan any advice much appreciated x

Hi Tina,

Thanks for the update. I'm surprised that hematology didn't do inflation markers! Please let me know when you get your bloods done again.

Are you in the UK?  I don't know much about the public health system there, I'm in the US. Is there some way that your doctor can fast track or hurry up this screening process?  Does she know someone she can call on to get the CT scan and the bloods done faster?  It seems to me that you need to know what's going on with you--as soon as possible and that waiting patiently in the que isn't what needs to be done right now...

Also, it seems to me that you might want to start posting on this site in the lymphoma discussion group if there is one!  I'm sure that you will be able to find good information there!  

Please stay as positive as you can, but don't hesitate to go to A&E if you start feeling poorly!  

Also, know that you're in my thoughts and prayers, Tina, I know that this is a terrible time for you! xxx (((BIG HUG)))  

 

Thanks Lynda

Yes am in the UK..believe it or not a 2 week referral is urgent here. I could get a quicker appointment if I went private but it's too expensive.

I feel quite calm considering .....i had bloods done again today and they have marked as urgent so I will get results on Monday/Tuesday. They have asked for inflammation on these ones plus they have said they can compare as obviously I have much more visible nodes now then 5 weeks ago. I will look on the lymphoma forums on here.

I appreciate the support its a bit lonely as other than close family I don't really want to tell anyone .....as nothing is certain yet!

Hi Tina,

I understand!  I got lots of support from this site!  When I got diagnosed last year, and had my hysterectomy, my family knew, of course, and a couple of close friends.  I kept my meltdowns mostly between myself and my husband--he was a great support.  

But there were times when it felt so good just to get on this site and share experiences with others.  When someone can say, "I've been there, too, and you're not acting foolish, you're just scared to death! I came through this, and you will, too. " It means more than I can say!

Please let me know the results of your blood tests!  I'm here for you!  xxx

Lynda

 

The waiting is frustrating but I figure some people take months and months to get to this stage my total of 6 weeks isn't too bad...i guess I am lucky the nodes have come up in different places.....maybe I wouldn't have been taken as seriously otherwise. I will update you next week Lynda x

Okay!  Will be waiting to hear from you!

Lynda and Tina,

I was reading through the forums and found this discussion. I too have experienced Lymphoma when I was 24. 

Tina,I can tell you from experience what you are feeling is quite normal and any form of positivity will be good for you. Lymphoma is treatable and you can fight whatever you are faced with. 

I was engaged and left my home in  the caribbean to be with my fiance and his family in the US.I've never been outside ofmy country before and I felt all alone. 

When I found out what I had I didn't really have the reaction of a normal person. I didn't even cry. Sad but true. 

I told my fiance and his family whenI got home. My soon to be father in law told my fiance, "you should decide what you are going to do because you will be left with huge medical bills". After my first chemo I came home and they all moved out. I didn't know where they moved to but they called a few times and that was it. I was with my fiance for 6 years. 

Whatever life hands you, it will make you stronger! It did for me. It's just a path that we have to walk through. 

Th worst part in this is the "waiting game". Meanwhile do the things you like and be aroundsmiling people. 

xo,

Sonja

Hi Sonja,

I'm sorry that you had to go through all that.  But, as you said, you are now stronger!  I also hope that you are much happier!  

Sometimes life hands you these situations and the people who have said that they love you and promised to be with you through thick and thin flee faster than lightening strikes. I like to think of it as though the Universe has taken out the garbage for you! I'm sure what you went through was horrible--

But now you know that you are brave and strong and deserve someone who's the same! xxx

Lynda

Lynda,

You couldn't have said it better! The Universe did take out the garbage. I was naive and young to admit it to myself so it was done for me.

I am so much more happier now. 

My prayers and positive thoughts for you and Tina as well.

 

What an awful experience 😣 I have a very supportive fiance and beautiful kids...so u guess I am being strong for them really. I also think I don't really want to make a fuss when...i actually haven't been diagnosed ...and it could be nothing ....(wishful thinking)! These forums are great...just to hear people's story's and what to expect xx

Thank you!  Keep happy!  xxx

Hi Lynda I got my bloods back all were ok except c reactive protein which was 7 when it should be between 1-3. I have read mixed things about this some say over 10 is high so mine slightly elevated.... for some serious conditions it is over 100 or high 20s. I think it depends on the underlying condition so can't really use as a guide. I have read people diagnosed with lymphoma had levels of between 4-10. So I guess it is just indicative and depends on the individual. I have also developed 2 large swellings in my neck over the weekend. I don't know what they are there is one on each side sitting under my arteries. One is the size of a golf ball and one is about the size of a bouncy ball just slightly smaller. They aren't particularly hard. And are moveable but they are only visible in certain positions if I yawn ...cough or clench my teeth. They aren't obvious if I am just standing upright. My haemotology app has come through and is 8 days away...so a long wait . It's hard because the veins/artery over them are quite thick....i don't know of its meant to be there. I have also lost 5lb this week without really doing anything different! Hopefully I will know more next week x

Hi Tina,

If I could take away what you're going through, I would.  I'm so sorry that this is taking so long!  How is your stamina?

Remember that you're going to get to the bottom of this.  Once you find out, well, you'll know what the next steps are!  I almost think that the waiting and the worrying is worse!  

Please let me know how you're doing! xxx

Hi Lynda

Seen Haemotologist today. She didn't really reveal anything. She said the groin mass she wasn't sure on (she's not sure if it's related to lymph nodes) but it's in the place where they should be. My smaller nodes near clavicle she could feel them but said they are small. She didn't exam the large lumps at the front of the neck. She said she won't repeat bloods as they were ok and were only done last week (not too alarming she said) but has booked me in for a CT scan next week. I have figured that although I haven't got any answers at least a CT scan will show up what is going on !

Feeling hopeful that I will have some answers and can at least rule out lymphoma from the scan x

Thanks for letting me know!  I'm glad that you're getting a CT scan.  I agree that it should give you some additional information.  How are you holding up?  xx

I am OK. I felt bad after the appointment as it was a bit of an anticlimax. It was like I had prepared myself to find out and thought i would be told so I felt like I hadn't progressed any further. But then the more I thought about it the more I thought she can't tell me that what she doesn't know. Unfortunately everything just takes longer than you want it to. She has already booked my follow up appointment to review the CT which is the 10th so hopefully my CT date will be next week! She did say if the CT shows inflamed lymph nodes then we will move to biopsy.

I'm glad you're okay.  And, you're correct, she can't tell you what she doesn't know, and probably doesn't want to add to what you're already going through by making a remark that could make you feel worse.  

I hate going for tests and then waiting for results.  The waiting is the hardest part, isn't it?  xx

Please let me know when you get your CT scan!  In the meantime, take it easy if you can! xx

CT has been bumped up to Monday very happy. They had booked the 13th and my consultant said that's too long which is good. Hopefully some answers in a week or so !

That's great news, Tina!  Thanks for letting me know!  Will keep thinking of you...

Please let me know how you're doing and how the procedure goes! xx

So Lynda mixture of good news and bad. I'm afraid I am still a bit in limbo.

My CT didn't show any masses. Although I didn't get given a copy of the report nor did I get to go through each area where I have inflammation. My Haemotologist has said she doesn't think I have lymphoma ...and that the nodes are swollen but only around 1cm if just bigger in the neck.

In terms of the groin she is not sure and she didn't comment on what the CT scan said about that area. But I have a definite swelling/mass. She was going to refer to multidisciplinary team and come back to me on next steps there but she didn't think it was lymphoma. I didn't really probe on this and wished I had. I was distracted as she had said everything is fine but then back tracked. From what I could gather there is a node there bit it's size isn't a cause for concern ?? Or is just within margins. I am getting a copy of CT report next week so I can see for myself.

Because I am still having night sweats she is going to see me again in 8 weeks and if I have continued to have them she will do a bone marrow biopsy. I'm not really sure what to think as I would prefer a biopsy on the nodes to be sure but she's saying they aren't big enough to warrant that. My blood work doesn't indicate that there is something wrong with my bone marrow. My bloods are normal and she has ordered a whole host of others to rule out mono, hiv and epstein Barr.

My concern really is the groin as the mass is visible to the eye and is around 5cm by 3 cm. If it's not lymph node related then I need to be referred to a gynaecologist or orthopaedic or someone to look at it and say what it is. I am getting pelvic pain and pain radiating down the side of the swelling when I walk over a mile so I really want it resolving to rule anythung sinister out.

So alas am not really any further on. Subject to what my CT says if any of the nodes are over 1cm I am going to ask her to biopsy.

Not really sure what else I can do !!

Hi Tina,

Well, good news and troubling news! I'd suggest that when you get a quiet momet you could write down your questions after reviewing the CT report and get another appointment with her, to talk over the results.  It seems to me that she is thinking that you might have a localized infection or irritation in the larger mass, perhaps a node that for some reason was unable to drain?  

I think that you're doing all you can do right now...which is pursuing your goal of finding out what's going on.  And, it's a good goal.  Keep on refusing to be fobbed off!  

Please let me know how you're getting on! xx 

Hi Lynda

Things have moved on slightly. Feeling a little better and my gp is taking me seriously now.

CT: so turns out all my nodes are well below 1cm. The ones in the neck especially. The only slightly enlarged ones where in my armpit and they were 9mm so still not a cause for concern.

Groin: the lump isn't related to the lymph nodes so I am having an ultrasound to rule out anything sinister. My gp has said it could just be a lipoma and as it's close to the surface on the skin the ultrasound should show it clearly.

Bloods: I have had Epstein barr previously but it's not active now so they have said that may explain why there may be some slight raised nodes that haven't gone down. All other bloods have been normal.

Larger lumps either side at the front of my neck: I can still feel these and they have a weird tingling sensation. Doctor has said the are soft tissue muscle related and she isn't concerned Ed but to keep an eye on them.

Thyroid. The CT showed a small thyroid nodule which they arent concerned about. They have suddenly realised I haven't had a thyroid function test or hormone level test and that this could explain night sweats. I have been booked in to have these.

I think from the sounds of things now it's unlikely to be lymphoma. I'm hoping there's a simple explanation for it all.

Feeling more positive now though xx

Hi Tina!

I'm so glad to hear from you!  I've been wondering how you've been doing!  You've made excellent progress...especially because you don't have the lymphoma worry any longer!  You must be so relieved! Good for you for persevering!

Hopefully, pursuing your thyrod function and hormone levels will provide you with some more good information, too.

Please do let me know how the tests go, and how you're doing! xx