in limbo

Hi all
Had two biopsies yesterday on “scar tissue” in axilla and both are suspicious one about 2cm in between ribs. Does this class as secondaries or local recurrence?
Told I will be taking chem in tablet form I think it is cepatebane or something, has anybody any experience of this and how where the side effects.
I still cannot believe I have told Onc for 2 years about this lump and been told it was scar tissue. Now I have seen the consultant and he made reference to skin puckering, things have moved very quickly, as I seem to be first in and seen immediately after, and am now waiting for a phone call, as they want me to be seen only by consultant Onc or Consultant Surgeon. Does this mean someone has made a big mistake?
What makes it worse is the fact in 1999 was told lump was nothing. 2001 stage 111 grade3 with 2 lymph nodes involved, from the original lump, so not very nothing them. 2005 had recurrence in axilla, after being told by a Professor it was nothing.
Now this. Starting to feel rather angry now to say the least.
Look forward to comments


Hi Ann

Whilst you wait for your fellow forum users to share their comments it may help to talk this through with someone. Please don’t hesitate to contact the BCC helpline as the staff here are especially trained and will be able to offer you a ‘listening ear’ as well as support and advice at this difficult time. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.

I hope you find this helpful.

Kind regards

BCC Facilitator

Oh Ann, so sorry your suspicions seem to be well-founded. I would guess that this probably counts as a regional recurrence, but I’m not an expert. I understand that it needs to be in the bones, organs or skin to be counted as secondaries. Your tablets are capecitabine or Xeloda, which I believe is one of the easier chemos, though I haven’t any personal experience of it.

All good wishes


Hi Ann

Very sorry to hear about your rceurrence. Yes this recurrence will probably be called a regional recurrence.

I was on xeloda (capectibine) for 9 cycles. I had it for 6 cycles in combination with another drug: vinorilbine, so difficult to separate the two lots of side effects. Commonly xeloda can cause nausea (it didn’t with me) and diarrhoea. If you get bad diarrhoea (I did on cycle 2) you have to stop the tablets, and usually the dose is then reduced. Another common side effect is ‘hand and foot’ syndrome when the palms of your hands and soles of your feet can get red, dry and blistery. I smothered my hands and feet in cream (Udderly smooth cream off the internet) and avoided this, but some people get it quite badly.Generally people don’t get the awful tiredness you get with other chemos. Certainly I felt reasonably OK during the 3 cycles when I wa son xeoda alone.

I am am really sorry that there seems to have been such a delay in your diagnosis and you may have a case for fromal complaint. At the very least I think you should talk to your oncologist about why s/he did not biopsy earlier.

By the way it is very hard to get information about regional recurrences, and the prognosis after a regional recurrence may vary from person to person, cancer to cancer. I have a regional recurrence in my supraclavcular nodes and chest wall. I am having chemo break right now after a year of treatment. I have CT scans about every 3/4 months and so far the cancer has not spread to major organs which is good news. The cancer in my chest wall etc is stable and i’m hoping it will stay like that for a while.

best wishes


Hi Anne
Sorry to hear your story, I think though you belong to our gang.

I had a recurrence after a breast removal on the skin chest wall, they gave me taxtere for 6 cycles and more rads but as soon as it stopped the skin mets reappeared now i take xeloda tabs and on trial lapatinib, i am starting my second cycle on wed and so far so good hardly anything there.

Hope you ok and if you want a rant we are here
Love Mel x

Thanks for your replies, yes it appears I do belong to this gang thus far. Had results today, as suspected 2 cancerous lumps, same as original. Now have to have MRI, bone liver etc scans. Told not curable but controllable, chronic disease. For the moment I have been changed to Femara as its is still er pos, until all results are in. Jane I have followed your progress since your diagnosis, and have always admired your views and opinions. So pretty much what I suspected.
You all seem to be nice friendly people so in a strange way I am pleased to join you.

Hi Almas - I am so sorry to read that the results today were that the lumps were cancerous, especially as you seem to have been concerned for some time and had a hard time getting anyone to take notice of you. Glad that you have a treatment plan, but no wonder you feel angry, and I should imagine very upset as well having just heard this news. Please keep posting and let us know how you are. I have a hard lump under my scar which I’ve had difficulty getting anyone to take any notice of, but today the registrar said it is very unusual and she wants me to see the Consultant tomorrow, and for me to have a biopsy. What a roller coaster we all live with once we have started on this unwelcome journey. Very best of luck. Sarah x

Hi Ann

Really sorry to hear that cancer has been confirmed and it looks like you’ve joined the regional club. I really hope your other scans show no further spread.

Earlier on you said you might be going on to capectibine…but have they dceided to postpone that and give femara a go??

very best wishes


So far changed to Femara as still oestrogen pos, not herpos tho. They are waiting for biopsy results to see if cancer has changed. Having MRI on Thursday to see if op, is possible on lump, but not quite sure what structures are involved as in axilla, but fixed. They said on Wednesday, that they were saving the chemo for later, when it is needed, as I now have a chronic condition, which is controllable not curable, but he thinks!!! it will be localized. Did ask about late diagnosis, and he said, this may sound protective but even if we had looked at it 2 years ago it wouldn’t have made any difference to the treatment. So still waiting. Will be going on a cruise in 11/2 weeks, so will enjoy that and wait for the end strategies. It eventually just becomes another day really. Husband had prostate cancer 3 years ago and his psa is rising. as long as we can keep going till the boys are old enough that’s all we ask. At the moment feel perfectly fit and well apart from the golf ball under the armpit. So keep smiling and get on with it.
Jane I hope your chest etc is behaving and you are enjoying yourself. It is sh**t isn’t it, the more I find out the less I believe in a cure.