Worried about a recurrence

It will be four years next month since primary diagnosis and subsequent mastectomy, chemo, rads + Herceptin. In 2009, had a reconstruction, last year a new nipple and have just had the tattoo done to the nipple area. Have been delighted with the result and has really boosted my confidence, particularly since I have been motivated to lose a stone and a half through weight watcher and am thinner and fitter than I have been in years.

I have, however, discovered a lump just above my collarbone same side as mastectomy. GP has referred me back to the hospital for further investigation. He did however say that the lump was far smaller than usual for lymph node recurrences and not to worry unduly. (Easier said than done!!) I just wondered if anyone out there had had similar experience with lymph node affected in same area, and if so how big was the lump or lumps? Mine the size of a pea - he said they are usually size of a ping pong ball when cancerous. Am confused - hoping against hope this is something else and dreading the wait till I get seen at the breast clinic.

Hey Twinmummy

I’m sure there are ladies on here who have had wee lumps that have just been reactive nodes & can reassure you, but you’re definately doing the right thing in getting it checked out!

To be honest, I wasn’t sure whether to post or not!

I found a tiny wee lump just at my collarbone on my affected side, 2 days into rads, 3 weeks after chemo!
I thought it was just my lymph nodes complaining about being zapped…but apparantly that doesn’t happen!
My Onc & Breast Consultant decided to do a CT scan, as they weren’t happy to biopsy because of the location.

The CT scan shows 2 infected lymph nodes - 14mm & 10mm in size. There’s still a wee bit of me thinking…it might not be cancer…but for me, like my onc said, with my history (4.5cm triple neg with 17/30 nodes)it is definately the cancer being a persistent wee so & so!!

I’ve had 4 weeks of rads + 5 boosters to the nodes & they feel much bigger now, but my oncologist thinks that’s just the cancer reacting to the radiotherapy…I certainly hope so! Will find out for sure in 4 weeks or so when I have a further scan.

I’ve everything crossed that yours turns out to be nothing, but if it is worse case scenario then at least you’ll have caught it early!

Best of Luck

Hxx

hi twinmummy,

I have an enlarged lymph node on the opposite side of my cancer on my neck, got an ultrasound and everything ok with it, I was worried sick about it.

fingers crossed for you, take care

Carol xx

Thanks Hayz for being honest - I so want to know what has happened to others who’ve had similar, whether good or no and thanks Carol for your good wishes. Just waiting for that letter with the appt now and will let you know the outcome. x

Hi Twinmummy,

I am also worried about a lump near my collarbone, following a viral infection. Have been posting my woes here: breastcancercare.org.uk/forum/viewtopic.php?f=91&t=25942

Really hoping we are both OK - there do seem to be a few people who’ve had neck lumps turn out to be nothing sinister.

Fingers crossed - keep us posted x

Hi Twinmummy

Sorry to hear you are going through this and you too scaryfox.

Like Hayz I wasnt sure whether to post, but you have said you would like to hear good or bad from people in a similar situation, which I am so here goes. I was dx in Oct 08 and had WLE, then a bit more to clear the margins in another op and they took a few more nodes so in total 8/16 affected, it was grade 3, stage 3 and had vascular invasion. Had my chemo which finished in April 09. I had noticed a lump under my arm since the December 08 but they kept telling me it was a seroma. After chemo finished I asked for a biopsy on it as it was still lurking but not growing or anything, they did it and it came back inconclusive so they agreed to take it out anyway in May 09. It turned out to be ‘something nasty’ according to surgeon but then got very played down by Onc who said it was infected in a vascular space (to ths day I dont know what that means) and they were confident they had removed it all. Anyway went on to have radiotherapy and they included the supraclav area in that. All treatment finished July 09. In August I had a scan and there were 7 little nodes showing but they thought that may just be reactive from all the treatment. They agreed to keep a close eye on things and re scan in March 10. In Jan 10, one Saturday evening I was having a bath and was fiddling around looking for things as you do and spotted a tiny bump (like a tiny grain of rice)right in base of neck/collar. I was convinced it was a swollen gland from a horrid respiratory thingy I caught as almost everyone did. By the Wed it was pea sized so called up and went in the next day. They did an ultrasound and there were quite a few nodes enlarged, so the radiologist performed a needle biospy there and then (the Onc had said there was no way they would do that as it was too close to artery and no chance of removing them). The following week it came back as cancerous and loads of tooing and froing later I have started on Capecitabine. I went for 2nd opinion at Marsden as Im triple negative and wanted to know all of my what appears to be limited options. During the time it took them to dx and starting Xeloda it was about 8 weeks and during that time the lumps have got larger, one particularly so. However just into my 2nd cycle and I am noticing they are going down, maybe its my wishful thinking, I dont know but they definately feel smaller to me, only in the last few days. I will have another ultrasound on 22nd so will know for definate if they are shrinking. So, what Im getting round to saying in a very long winded way is that I was totally devastated when they told me it was back (did it ever go away really I sometimes wonder) but I am now very hopeful that this drug which doesnt make me feel too bad at all is doing its magic. I am truly hoping this isnt the same for either of you ladies and that yours turn out to be swollen glands and nothing sinister, it does happen to a lot of ladies and turns out that way so fingers and everything else crossed for you.
Debs x

Dear Twinmummy, I had a similar lump at the base of my neck - pea-sized. I went to the doctor as I had also been suffering from quite bad back pain and he referred me to my oncologist. The oncologist said that it “didn’t feel cancerous” but agreed, due to my history, for me to have a CT and MRI scan. Unfortuately for me, secondaries were found in various places. I hope I’m not frightening you, yours could be nothing at all, but I do feel that you should insist on having this checked out. I’m currently having chemo and like a previous poster feel that the lump has reduced. I wish you all the very best. I did have other symptoms besides the lump and feel I’ve been very unlucky. I hope you don’t mind me posting this but feel strongly that any concerns should always be seriously checked out.

Alison x

Thanks Scary Fox for your reply - keeping absolutely everything crossed for you too! Smiley and Tawny good to hear from you also, even though in your cases the lumps proved to be malignant and hoping that chemo continues to work well for you both. For me, its the waiting thats always the worst as its so difficult to focus on anything else. I too had grade 3 stage 3 with vascular invasion Smiley and 13/17 nodes affected so know that am at greater risk of recurrence. I was however HER2 positive and feel very fortunate that Herceptin was available to me has been effective for me so far.
Hoping that the appt will come through the post tomorrow… x

Hi Twinmummy

I know its easy to say but try not to worry too much. I have a friend who had stage 3, grade 3, lymph involvement with vascular invasion and hasnt had a recurrence and she is 5 years on now. She has had a few scares like this but thankfully always proved neg so hold that hope there. Keeping them crossed for you x

Can someone tell me what triple negative means please.

Hi olisnana,

Here is a link to information on the BCC website on different types of breast cancer diagnoses, which includes information on triple negative:

breastcancercare.org.uk/breast-cancer-breast-health/diagnosis/primary/types-of-primary-breast-cancer/

Hope this helps.
Best wishes,
Kate, BCC Facilitator

Hi

I had a lump checked out at my oncology appointment in March following my dx July 2005 Stage 2 Grade 3 invasive. I had chemo, lumpectomy with removal of eight lymph nodes, then radiation with Arimidex for past 4 and half years. I was informed that this lump just under the scaring could be neprosis but biopsy was arranged with a routine mammogram. The first biopsy came back inconclusive and was repeated. The second showed that bc has recurred and in same place also Grade 3 invasive. I am now waiting for results from a bone and CT scan and so worried that something else may be lingering although the lymph nodes were positive on the ultrasound. I have been informed that I will have to have a mastectomy which also worries me but unsure at this stage whether I will receive chemotherapy again. Can anyone advise me whether is is better to have reconstruction immediately or wait? I hear so many peoples views but not from people who have experienced it themselves.
Thanks Jacqui