Sometimes lymphoedema means cancer is back

I had my surgery in March 2004 and wasn’t bothered by lymphoedema until November 2006 when my arm started to swell. Saw bc nurse who sent me to consultant for check up (this is standard in my area…is it elsewhere?) Had ultrasound of armpit chest wall neck etc and all OK.

In Jan/Feb 2007 lymphedma getting worse…pain not too bad but more swollen…wan’t too bothered as it wasn’t disrupting life and I put it down to being very lazy with excercises.

Then April 2007 found lump above collar bone…scans and biopsy revealed cancer in various supraclavicular and intravclavicular nodes, chest wall…and the news that the reason, in my case, for lymphoedema was cancer blocking flow of lymph.

I don’t know how often this happens…not that often I think, but I have never seen this possibility mentioned in pamphlets on lymphoedema or in advice to patients. My onc thinks the cancer had probbaly been back 3-4 months before I found the lump. Finding it any eralier wouldn’t have made any difference to treatment or long term prognosis, but I like to think I know my breast cancer facts and on this one I didn’t. Was it mentioned in your training Fizbix?

I now wear a sleeve all the time, am still bad with the exercises but the state of the swelling varies…has gone down on some chemos as lumps have stabilised, but then swells again.

Jane

Blimey Jane - sorry about that. No mention was made in the training but obviously very useful for everyone to be aware.
Thaks for sharing love FB xxx

Hi Jane/Fizbix

I am having similar problems to Jane’s at the moment, so I can identify with this only too well.

I vaguely, really vaguely, remember reading something about this ages ago on the internet. I have never heard it alluded to by BCNs or lymphoedema nurses or seen it mentioned in any literature I have been given, but I imagine it’s why they give you (or should give you) a scan when you are first diagnosed with lymphoedema.

X

S

Yes certainly people should have a scan when first diagnosed with lymohoedma and I don’t think they always do???

Jane

Hi Jane - when I first developed lymphoedema in one arm in 1996, I was sent for an MRI scan (clear)

When I got it in the other in 2004, no MRI (although the lymphoedema was worse this time), given a CT scan (clear) instead after I’d complained about how much pain I was in (arm and shoulder).

(However, my remaining lymph nodes are now playing up, it seems…)

I think it must depend on where you live…

X

S

Hi Jane

I think you know from some of my other postings that I was a lymphoedema nurse. When I wrote or talked about lymphoedema I would always say “lymphoedema can be caused by cancer, or treatment for cancer”. When we assessed a new patient we would always ensure that their lymphoedema was not being caused by enlarged lymph nodes or other growth that was blocking the lymphatic flow. This would normally be excluded by the referring doctor but we would also be very aware -scans not done routinely, just if there was any doubt. Just off the top of my head, I would say that out of about 400 patients I cared for, between 10 - 20 were suffering from lymphoedema which was a direct result of tumour growth. The lymphoedema was treated in the same way - trying to encourage new pathways superfically under the skin through which the lymph could flow. Problems would occur if the tumour was affecting the movement of the arm as then there would be an increased collection of fluid, and without the muscle movement it was more difficult for the sleeve to be effective and for the pumping action of the muscles to aid the flow of the lymph back up the arm.

I can only re-iterate what you are saying, anyone who notices a swelling of their arm should see their doctor, who should exclude a cancerous growth, and then make an appropriate referral to a lymphoedema clinic. Hope this is of some help. Sarah

Jane, I think we talked about this on this site and the other site as well. I too have swelling in the supraclavicular area and collarbone and round back above arm. I always had lymphoedema on chest wall and (very slightly) upper arm. I have been regularly monitored from the start, but don’t know whether this is because of my prognosis or if it is done routinely. When I developed the new swelling in the collarbone area had full ultrasound and biopsy, all clear. In my case it seems that the lymphoedema is spreading upwards rather than down my arm. I am not wearing a sleve unless I travel by air, as the upper rim of the sleeve would constrict the lymph flow even more. My oncologist said that all my lymph nodes were enlarged, but no blockages were seen anywhere, so no new tumours. I have been told by my BC nurse way back that swollen lymph nodes could be another tumour, so always looked out for this. I am on 6 monthly chek ups anyway, so any new problems would be picked up pretty quickly. I am having weekly treatment at the moment to bring the general swelling down and it is certainly helping. I have also been taught how to redirect the lymph flow towards my groin area, as the normal massage is not always helpful if you have chest swelling.

Hope this answers some of your queries.

Birgit

P.S>. Hope you are enjoying your summer without chemo (despite the weather)

I haven’t had any particular attention for the swelling under my arm, plus minor swelling down the arm, around thumb & also above the collarbone (I love this word supraclavicular) - beyond a quick feel by my onc at the end of our last consultation 3 weeks ago, whereupon he said, ‘oh yes you’ve got it’ & sat down & wrote me a referral for a ‘sleeve’ before shaking my hand out the door. I also love the various ways people have of getting someone out of their office space - not confined to the medical profession. I do a hilarious rendition of one of the professors in my department closing out a supplicant on any subject.

I haven’t been for the ‘sleeve’ yet, because I’ve had the feeling, as described by Birgit, that it would just aggravate the worst part of my swelling - under arm & above collarbone. Or maybe it’s secondary or swift recurrence, as Jane suggests - that would really ‘focus my mind’. I’ve been swimming and doing the exercises and sometimes I think, ‘eureka, it’s working’ - and sometimes it is worse. But this is a very useful thread that I will print out and absorb: it produces a number of important questions I’m going to ask at my next ‘audience’ in about 4 weeks. I rather blew my alotted time last time with an attack of the wimps and came away feeling like a wetty twit. So thanks guys, a mine of information as usual.

Cheers, M-L

Hi all

I developed lymphoedema in March last year, 10 years (10 YEARS!!!) after my lumpectomy & axillary clearance, which had taken 19 nodes, four of which contained cancer cells, and one had a tumour bigger than the one in my breast. Because this happened such a long time after primary BC surgery & rads, my onc, who I see in connection with my secondary BC, was very suspicious that there would be one or more new tumours somewhere nearby, but CT and MRI scans couldn’t find anything. Although I’d never been specifically warned to watch my affected arm for new symptoms, I’m very lucky to have a great onc team, who immediately referred me for the CT & MRI scans. Yes, as others have said, we should always get new lymphoedema/pain/lumps checked out, but it’s sad to hear that we don’t all get a consistent response from our oncs/BCNs – another example of the “post-code lottery”?

Marilyn x

ive never been offered a scan after my lymphodemia diognosis .just check ups with the nurse and have to wear a sleeve and glove as mine is quite advanced .i had lymphnode removal as 12 of the 51 they took were cancerous ,should i be worried as ive had severe pain in my arm which i thought was due to fluid bui,d up.even the physio has now discharged me as she cannot manovuoer my arm due to the pain .must say i dont get a lot of information from the lymphodemia clinic ,last time i went was prescibed gloves that were too small and made my fingers go black !should i ask for a re scan ,having ct scans on my liver at present ,my mastectomy scar is still very tender after 2 yrs ,i get lots of fluid in my dog ear. lynn x

Hi Aroma

Certainly don’t want to panic you or anyone else but I’d think you should ask at least for a check up with a doctor and an ultrasound scan.

If you are having a CT scan of your abdomen and thorax and neck this would show any cancer in thsoe areas. (my tumours show on CT scan.)

I’m just an amateur…do check this all out with a specialist doctor.

very best wishes

Jane

Thanks Sarah for information on numbers…you know how I like a statistic…sound slike you were a model lympho nurse!

best wishes

Jane

I know you like statistics Jane - and facts, as we all do - and since I wrote that I have been going over in my mind trying to remember the exact people concerned so that I was sure I was accurate!!! I also cared for people who had leg lymphoedema after prostate/gynae cancers. I would say, thinking about it again (it was several years ago now) that about 10 of the 400 were situations where the lymphoedema directly resulted from lymphatic blockage caused by cancer tumours where the primary was a breast cancer. Perhaps the British Lymphology Society has some actual figures now!

At the time I gave all the support and encouragement that I could to the ladies I cared for - but Jane, if I knew then, what I know now! Mostly by that I mean that I never really realised the constant fear that women who have once been diagnosed with breast cancer have of the possibility of it returning. I know this is something that is discussed a lot on these threads, and I can only agree how vital it is that we raise awareness amongst professionals - and people at large - of this fear, and the really negative impact that it can have on the emotional recovery from breast cancer however good the statistics are!

Best wishes
Sarah

Hi ladies

just wont to know …as im new to all this

has masectomy and total l/n clearance…5 june this year…
i know it is close to [post opp] but when i wear a bra i seem to swell up around the arm pit and the back of shoulder…

is this normal as im not long from opp or soulh i be concerned ???

sal

My lymphodema is mild and was diagnosed 3 mths ago. I am having an unsettled period thinking I may have secondaries. Not 100% sure why. My friend did die recently of BC. It really bothers me that I have never been offered a MRI or CT scan as it is not our hosp policy, even though I had lymph node involvment. Did have a bone scan due to shoulder and rib pain but only ‘normal’ aging showed.

I sometimes get a short sharp pain on the sides of my head nr my temples. Not like a headache. Never mentioned these before and hoping I am being paranoid. Have hosp next week, should I mention all the above?

Irene

Hi Sal and Irene - It’s so hard, isn’t it, every swelling or discomfort that pre BC we would not have worried about, now immediately makes our mind go to “the worst” scenario. The best person to ask about any concerns is of course the doctor or breast cancer nurse, but I am happy to add my thoughts if they are any use!

Sal, what you are describing sounds to be very normal indeed. As you say, you have only recently had the op, and your body will be busily finding new pathways for the lymph to flow. As you had a total lymph node clearance that does mean that you are “at risk” of lymphoedema developing. There is a lot that you can do to lower this risk in the way of skin care, avoiding heavy lifting etc. Have a look at the new lymphoedema threads and you will find lots of information there. Wearing a tight, restrictive bra strap can cause some swelling and wider straps and a deeper cut under the arm might be helpful and more comfortable. It doesn’t sound like anything you need to worry about though.

Irene, sorry that you are having a worrying time, I think that lots of us go along feeling fine for a while, and then get anxious and it is a very uncomfortable feeling. Something like having a friend dying of BC, or even reading a thread like this one (!) is bound to turn our thoughts to all the “what if” possibilities, and perhaps that is why you are feeling unsettled, rather than anything physical that is happening. I don’t think most hospitals would suggest an MRI or CT scan unless there was specific cause for concern, you are not unusual in not having had one. As for the pain in your head, hopefully it is nothing of any significance (might even be stress related), but yes, of course mention it when you are at the hospital - and do tell them that you are feeling anxious and are concerned about secondaries. Hopefully they will be able to reassure you. The doctors/nurses we see well understand our anxieties, we all feel this way sometimes! Very best of luck everyone. Sarah

Thanks seabird

yea im wearing a mas bra as the other normal bra’s seem to be uncumffy …

i go for a fitting for prostetic tomorrow so will have chat with bcn …
sal x

Can anyone please advise me on what kind of scan I should be aiming for when I see the surgeon for a six month review next week?

I have lymphodema in my left arm and it has worsened in that arm and armpit and has spread to lower arm now. Also, more worryingly, at times it moves to my back, down right rib cage side, into bottom cheeks and top of thighs.

I had a 1cm low grade tumour removed and 3 lymph nodes (clear) in Jan last year 2007 and radiotherapy for 15 sessions in April/May 2007. I am also experiencing water retention in my legs probably as a result of Tamoxifen.

Any suggestions would be most appreciated. Trying not to get in a state!