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Swelling above collarbone that doesn't go down :-(

12 REPLIES 12
Caroline9339
Member

Re: Swelling above collarbone that doesn't go down :-(

Hi , my mum is facing the same problem as yours infact she always cry when the pain starts . In the last few weeks she has been feeling sever pains and discomfort around her chest area. Her collarbone is swelled and the place has gotten hard . Her doctor said it was infections and so he prescribed anti bacterial medicine for her but the pain and discomfort is still there.
Cattykins
Member

Re: Swelling above collarbone that doesn't go down :-(

Hi Nannysal

 

Thank you so much for getting back to me and putting my mind at rest and I am pleased that your CT scan was clear.

 

I'm sure in time I will get back to normal and stop worrying about every little thing!!  

 

Thanks again

 

Take care 

Cattykins xx

Nanny_Sal
Member

Re: Swelling above collarbone that doesn't go down :-(

Hi Cattykins,

 

sorry to to hear you are having a worrying time. My CT came back clear. I still have a swollen area above the collarbone and have to assume it is Lymphoedema related. It certainly goes up and down and is sometimes more noticeable than others.

 

My Oncologist always has a good feel around at my appointments and just says to keep an eye out for firm lumps! 

 

After all all we have been through its understandable that you are worried. You could request a CT scan if it's really concerning you. But hopefully things will settle down for you too. Xx

Cattykins
Member

Re: Swelling above collarbone that doesn't go down :-(

Hi Nannysal, 

I hope you don't mind me jumping in on your thread and I understand that it was posted a while ago but I was browsing and I am really curious as to whether you were given an answer about your swelling?

I was diagnosed with IDC last July, no node involvement, oestrogen +ve and HER 2 -ve. I had 2 lumpectomies as didn't get a clear margin first time and then 4 weeks of radiotherapy (1 week of boost). 

2 months after radiotherapy I noticed quite a large soft swelling above my collarbone on treated side.  Swelling went down a bit by the time I saw the surgeon but there is still a noticeable swelling there and it hasn't changed in 3 months.  I saw the surgeon who scanned the area and although he couldn't tell me what it was, he thought it might possibly be a fatty lump caused by radiotherapy? I felt really relieved when he said he was sure it wasn't anything sinister though.

3 months on and I now have noticeable swelling in my treated breast - back to the surgeon who scanned my breast and confirmed Lymphodema.  Seeing the Lymphodema nurse next week.  He also whipped the scanner over my collarbone and still did not seem at all concerned about it.  The area is still swollen and I worry that I have some neck pain there and feel like I have quite a few headaches on that side??

I'm sure the headaches are more likely caused by worry!

Hope you don't mind me asking but I would be really interested to know what the outcome of your CT scan was.  I feel like I am making a bit of a fuss and I have had the area scanned with ultrasound twice but your comment about how the ultrasound wouldn't help has made me think again now??

Cattykins

Nanny_Sal
Member

Re: Swelling above collarbone that doesn't go down :-(

Hi Lottie, Great to hear that you are feeling more human again 😀 I look forward to May next year when I will hopefully stop 😉 Although having only done 2 years by that point I might have to have more discussions with the Oncologist! But we'll see.

 

Currently waiting for the CT appointment, then hopefully I might finally get some answers or at least be able to relax and move on with life! I start a new job in September, would really like to start it, knowing that all is good! Xx

lottie63
Member

Re: Swelling above collarbone that doesn't go down :-(

Hi Nannysal

                     Oh blimey .... not what you wanted to hear then !! you wouldnt think that swelling would be so hard to pin point as to why would you, Grrrrr ...well Im sure they are doing a ct to rule out anything ontoward and to be thorough , keeping everything crossed for you, please update when you can, yes I am ok thanks, arm behaving unusually well atm, Onc has taken me off tamoxifen as side efects worse after 3 years and as I am very low er 3/8 benefits being outweighed by s/e, have to say feeling more human already after 2 weeks 🙂 and he has advised that I am not putting myself at risk by coming off, have to question was the last 3 years of pergatory on it all in vain, I do hope not, so keeping everything x that he is right

 

Take care

 

L x

 

Nanny_Sal
Member

Re: Swelling above collarbone that doesn't go down :-(

Hi Lottie, thanks for asking, and well done on remembering 😉 

 

Yes appointment was today, but sadly didn't quite go to plan! I saw the surgeon who has a feel, said he couldn't feel a lump, but that there was a swollen/thickened area.....hmmmm think I've mentioned that for months. He then went on to say that there was no point doing an ultrasound as that wouldn't show anything?? So in other words the ultrasound I had in Oct was a waste of time!? 

 

So so he has requested a CT scan, so now waiting for that appointment to come through 😒 feeling fed up with the whole thing, and now more worried than before I went. 

 

How are you doing? Xx

lottie63
Member

Re: Swelling above collarbone that doesn't go down :-(

Hi Nannysal

                       Was it today you were at the hospital ? if so how did you get on ? I do hope you managed to get some answers

 

L x

Nanny_Sal
Member

Re: Swelling above collarbone that doesn't go down :-(

Hi Lottie, interesting to hear that your side effects got worse with Tamoxifen. I was doing okay, until a few months ago. Then the hot flushes returned, leg cramps started again etc etc. I spoke with Oncologist and was shocked at how little effect hormone therapy has on my situation, even though my cancer was ER+ 8/8. I assumed without the Tamoxifen I wouldn't stand a chance, but in fact my odds of it not coming back are pretty good! So I am considering stopping Tamoxifen at the two year mark! I don't think my quality of life at the moment is something I can live with for the next 9years!! I'd rather take my chances without.

 

hopefully I will get some answers about this swelling, although I am preparing myself to be told that they don't know what's causing it?! A mystery! But at least I can relax.

 

just spent a week in hospital with Cellulitus! So still feeling a bit rough! But on the whole doing okay.

 

Take Care! Xx

lottie63
Member

Re: Swelling above collarbone that doesn't go down :-(

Hi Nannysal

                    Im ok thank you for asking 🙂 breast still flaring up but ive had mamo and scan nobody seems to know whats causing it which is frustrating as you are quite aware !! and the arm fluctuates depending on the weather lol, I have now come off tamoxifen as the side effects were getting worse ( after 3 years !! ) and because my er score was 3/8 which is very low it has been decided it would not cause any detrement to my health or undue risk to come off now ?? so slightly worried about that but it was getting me down I have to say, but other than ALL that I am ok lol, I do hope you get some answers soon re the swelling, how are you coping other than that, hope your doing well 🙂

 

L xx

Nanny_Sal
Member

Re: Swelling above collarbone that doesn't go down :-(

Thanks Lottie, it's their uncertainty that I can't cope with! I've gone from being told its due to Rads, to it being Lymphodema, back to Rads damage and now, a scan to check it! Wish they had just done that while I was there having a mammogram! 

 

They obviously think I enjoy a nice day out at the hospital! Hope you are doing okay? Xx

lottie63
Member

Re: Swelling above collarbone that doesn't go down :-(

Hi Nannysal

                      I have not xperienced what you have BUT didnt want to read and run, when I have had excess swelling on my breast which I have lymphodema in, they always seem to put it down to rads damage, I am glad thy are scanning you again even if its just to put your mind at rest 🙂 it will help, please let us know how you get on, I no how much worry these unanswered problems can cause, take care

 

L x

Nanny_Sal
Member

Swelling above collarbone that doesn't go down :-(

Hi, was wandering if anyone else has had problems with swelling above the collarbone? I've had issues for almost a year. Had an ultrasound in Oct which showed nothing. Since then the swelling which was going up and down, has now become a perminant swelling. 

 

I saw saw the breast surgeon (who didn't examine the area) and Oncologist who said it was just a thickened area from the rads! This is the same Oncologist who told me it was Lymphoedema, until the Lymphoedema nurse told me it wasn't. 

 

I have received a letter telling me that after discussions with the 'team' they think it would be prudent for me to go in for another scan, just to check on things. I don't think it's anything sinister, but would like to know that for sure.

 

so was wandering if anyone else has had the same issue? In the last month I have been getting more pain and discomfort from the area, and I feel like I have constant pressure on that side? Hard to explain! 

 

Appointment with with clinic is next Thurs, so will know more then. Xx