Hi
I was originally dx in 2002 (and posted reg on the old site, but have re-registered to be able to post here)
I had a 2.2 cm invasive ductal tumour grade 3 ER+ , treated with WLE /aix clearence -all clear /chemo/ rads ,2.6 years with Tamoxifen and ditto Arimidex, finished in May this year (2008)
Early Nov I noticed slight enlargement on what I believe to be supraclavicular lymph node (just above left collar bone same side as orginal dx) My regular Onc was fairly happy it was not a prob as it was very small, but decided on ultrasound and FNA, just in case, radiologist confirmed that nothing sinister was apparent (also checked armpit all ok) but did FNA, on what she called a small gland,in the area of neck node, to cut a long story short, results are “suspicious cells” I saw a different Onc who was much more concerned and had a chat about how I felt about the results, there is no other evidence of disease in the breast area, I am waiting for appts for an ultrasound guided core biopsy (on the neck node/lump), and CT scan, had bloods done at appt (Dec 23) can now feel another smaller lump/node behind/slightly above the original one, so am now thinking the worst.
I think I am hoping for too much now for the suspicious cells to be a “blip” but wonder what the most likely outcome is, as I understand it, it could be a new primary, recurrence /spread of original or an indicator of mets or even a new cancer elsewhere, I know that only the tests will confirm what is going on, but would appreciate any sharing of similar experiences or info
Hi Erica,
Welcome back, but sorry to hear of your new worries. I’m sure you’ll get lots of support from your fellow forum users who have a wealth of knowledge and experience between them. I’m sure you know being a member of the old style forums, but the helpline staff are there for you if you need an independent listening ear, don’t hesitate to ring them. Calls are free 0808 800 6000 lines open Mon - Fri 9am - 5pm and Sat 9am - 2pm.
Hope this helps.
Kind regards,
Jo, Facilitator
Hi Erica,
My history is a bit long and complicated to go into it here (it will be good when we get profiles back). My first dx was in 1990 and have had few new primaries & recurrences over the years. I am ER/PR neg from first dx on. I had nodes just as you describe and my onc seemed to treat it fairly casually. I don’t think they realise how anxious it makes us. He just said they will keep an eye on them. I had already had several different chemo regimes by that time and they said they wanted to keep anything else in reserve should the nodes be an indication it was spreading. At least they kept a close eye. But I started to get more of them around my jawline - just below my ears. They tried to do an ultra-sound guided biopsy of one but it didnt really show anything and was difficult to do. Soon after that I got bad sciatica - couldnt put weight on my leg at all. So had rushed scans which showed I had extensive bone mets. in 2002. I then had xeloda which didnt work and i reacted badly to so was then started on navelbine which got rid of all the nodes. They came back few weeks after I finished and it was at that point they checked and found I was her2+++ and i was put on herceptin (this was fairly new around that time). That’s my story in a nutshell. We all respond very differently to chemos etc. At least with visible nodes response can be monitored. I have kept quite well over the past 6 years and my bone mets are stable. I hope you get answers soon and if these nodes are bad that they are a very early warning.
dawnhc
xxx
hi and thankyou for your replies Jo and dawnhc,
I have an appt for CT with contrast scan for chest/pelvic/abdo for next tues so hopefully will have more information soon, I remember when i was first dx the test for HER was + but was told I needed a further test to see if Herceptin was a good idea,(something to with fish test stikes a bell, wish I had kept info now) but as was about 30 months post chemo before I found out, was told there was no point at that stage, especially as it wasn’t freely available in our area ,and was then changed from Tamoxifin to Arimidex, so perhaps it will be an option if I have spread.
I have had arthritis for several years that comes and goes in severity and has steadily got worse, but I have put that down to age (I am now 53) and also a single gall stone was identified just after my original treatment(ultrasound), after 2 severe episodes of pain, it settled down to intermittent discomfort, so i was advised to leave well alone! but I am wondering if this could be significant,(liver?) Its driving me bonkers not knowing as I cannot focus on anything with any sense until I know what I am dealing with, but sharing it does help, so again thank you
Hi Erica
I never know if I should reply in these instances, but then I do appreciate it when people tell me thier experiences, both the good and the bad.
I was first dx in March 07, went through treatments etc and then in Oct this year has pain in mx side armpit, the nodes were removed and I was told the cancer was back and it was a local recurrance. Had a scan and all was clear, was so relieved!!! Went onto chemo again, and we needed a portocath as veins to bad from 07 chemos. Waited 2 weeks for op for portocath, by which time a node at the base of my throat / clavical area had come up, I showed it to the BNC the morning of my portocath op, she said it was probably just a reaction. Had op, had 1st chemo and a week later had began a horrid sensation that something was pressing on my throat all the time. Had 2nd scan, which showed that the clavical nodes, and ones between there and my armpit where all affected and the disease had spread. I was devestated.
Has a 2nd carboplatin but they are still growing and it’s getting more and more uncomfortable now. Todays chemo has been cancelled, so have appt with onc this afternoon to discuss options with her, probably switch to Taxol and Gemcitabine, but not sure yet. Turned out my nuets are too low for chemo today anyway, so I guess it makes no difference other than screwing up all my plans for next 3 months that had been carefully worked around the treatments.
So that’s my story, I sincerely hope that your experience is not spread, but just an infection or a reaction, when I first asked I did have ladies reply that they had had swollen nodes and they turned out to be nothing bad, so it can be ok!
Very best of luck Erica
Nikki
Hi everyone
My story is a little different to all of yours. I was dx in Sept 2007 with grade 3 ductal and spread to lymph nodes. I had neoadjuvant chemo for 8 cycles and then had mastectomy and lymph node clearance in April. I finished 20 rads in July. A few weeks ago a swelling came up by my arm pit. I visited my GP who said it was lymphoedema. I asked if I could be referred to a lymphoedema specialist but my GP said it wasn’t severe enough. I asked if it could be linked to recurrence and was told that this would not be the case.
I wasn’t happy with my GP’s response and so contacted my oncologist who said that I must be referred to a lymphoedema specialist as the area can turn hard and would then affect the movement to my arm. My oncologist said that although he couldn’t see any signs of recurrence he would refer me for an ultrasound to put my mind at rest.
When I had the ultrasound an area of “abnormal” lymph nodes was detected near my neck. The Radiologist said that she didn’t want to dive in with a core guided biopsy as she felt it could be due to an infection. She suggested waiting 6 weeks to allow any infection to go down. I have just had my appointment through for 23rd January and it can’t come round too soon.
When I was first diagnosed my cancer was tested for sensitivity to Herceptin. The result came back as being weak positive so my oncologist said that it would be sent off for a fish test but he warned me that whenever this happened the result was usually negative to Herceptin. This is what it turned out to be.
I know that the waiting is the worst part and hope that we both have the results we want to hear.
Good luck x
thank you again for replies and good wishes Nikki and Cora123, I too wish you both the best of luck with treatment and appt respectively.
To update, this morning I received a phone call from my Onc, to say an appt to see a surgeon (my original breast surgeon) has been arranged for Monday, to discuss having the node/lump/s removed instead of the core biopsy, which will most likely be done next week. I have had the results of blood tests done at my GPs and all normal apart from slightly elevated ESR levels, which I have been told could be due to an infection/inflammation somewhere or nothing at all, hoping that the result from hospital bloods will be similar.
Erica x
Hi Erica
It is good news that everything seems to be moving fast. Hope it all goes well for you next week. xxx
Hi cora123, thankyou x
hi again,
saw surgeon today , he has decided against operating as nodes are very small and he thinks that they will be difficult to find, so I am to have a MRI as well As CT , but he has said he doesn’t think they are a sign of advanced cancer, when I asked what he thought they might be, I was told not to worry too much as they could be just reactive / infection somewhere and that scans will show up any probs, so am keeping my fingers crossed and trying not to worry!!!
Hi Erica, well that sounds very positive, I hope your scans come back clear. Had my first Tax / Gem today, am sooo tired, napped through most of the treatment thanks to the antihistamine they gave me, just want to sleep now so gonna doze on the sofa.
Let us know your scan results Erica, will keep fingers crossed for good’uns
Nikki
Hi Erica
When I had my ultrasound and abnormal lymph nodes were found near my neck the Radiologist did say that there could be a number of reasons why they were enlarged. Infection was what she said she was hoping for. I asked her if the nodes were enlarged as a reaction to cancer what would this mean for me. She answered me by explaining that if it was cancer again then it would be classified as a regional recurrence and could be treated with a different form of chemo and there would still be the potential to cure me. Obviously this is the worst case scenario and I am hoping it will be an infection. I too have been told not to worry but it is easier said than done!
Hi Nikki
I hope your new chemo is successful and the side effects are not too bad for you.
thank you Nikki and Cora for your replies, I do hope this treatment works well for you Nikki and that the tiredness will ease,
and keeping my fingers crossed for the 23rd.Cora123 I do agree the “not worrying” bit is impossible!
Had CT today and am now waiting for MRI and follow up appts, I am going back to college tomorrow, (I am a mature art student) so hoping that will keep me occupied enough not to fret too much. will post on results when I have them x
Hi erica,
I have come a bit late to your thread but thought I would share my experience. I have had bc since 1990 and several recurrences/new primaries - probably because I am her2 positive although that was not around when I was first dx. Back in 2002 i had a number of nodes pop up around my clavicle and up my neck on either side to just below the earlobe. My onc took the approach that we would keep an eye on them. I already had several different chemos so he wanted to save further chemo if it spread. They were all quite small and as more appeared they tried to do fna with ultrasound but it was very difficult to get at any of them - some were too near major blood vessels. After the fna (which was about 8 mths after i noticed the nodes) I developed severe sciatica so various scans were done and showed I had extensive bone mets. I was started on bisphosphonates for the bones and chemo because obviously it had moved further on than my nodes. The nodes completely disappeared on the chemo but came back after I finished. I suspect this is because i was very strongly her2 It was at this point they checked on tissue from previous mastectomy. So I went on herceptin and the nodes were never seen again!. It sounds like your onc is being quite thorough and I hope after all the scans there will be no evidence of secondary spread. They will certainly be keeping a close eye on you now.
dawnhc
xxx
Just to clarify.
I don’t want to frighten or alarm anyone but just to add my expereince of regional recurrence which is different from what the text books say:
first of all regional recurrences are not treated with a different kind of chmeo. The chemo used will depend on what chemos have been used before, whether hormanals/herceptin are treatment options.
Single regioanal recurrences may be curable…but some regional recurrences are not…they may be treatable for a while but if they do not respond to tretament then a regional recurrence on its own can kill if the tumours are not controlled.
Cancer recurrences are complicated and its important to discuss your own case with medical team.
best wishes
Jane
Thankyou again for replies,
I am still hoping that this may turn out to be a false alarm, but want to be aware of the possibilities, in case it proves otherwise. I have only had one form of chemo (for original dx)
I am assuming hormonals may be an option if any further problems have the same histology as original dx (er &pr+) not sure about Herceptin as I have only had basic test which was HER+
x
Here’s hoping those results are good ones and it’s nothing to do with BC erica… thinking of you
Nikki
Thank You Nikki, thinking of you too, hope you are feeling less tired today x
Had my folow up today and so far looking very good, CT is clear as are bloods/markers, so the one fly in the ointment is still the suspicious cells from first lymph node, surgeon has told me he will not do a biopsy unless any of the nodes increase in size as he feels this will do more harm than good, as he believes they will be difficult to find/excise.
So as it stands now I will have a check on them in 8 weeks, unless they change in any way before, in which case I will be seen straight away. I am very happy about the scan results but still a little concerned about the nodes, but realize it could be a lot worse.x
Hi Erica, that’s really good news about the rest of the scan am pleased for you. Still a worry about the node, but fingers crossed it isn’t the disease and problem resolves itself for you.
Nikki