Hi, was diagnosed in Jan 2008 had chemo, mastectomy with reconstruction then radiotherapy. Now on tamoxifen and zoladex injection. About a month ago found another lump in reconstructed breast, had surgery to remove lump, however been told by surgeon that not all margins clear and to now have CT scan, bone scan and MRI as high possibility of spreading. Unable to tell me what treatments will be next. Anybody else been in similar situation ?
Hi Suzy - really sorry to hear about your recurrence. A friend had a similar experience though I don’t know all the finer details of her diagnosis. In her case the lump was in her mx scar, she had ld flap reconstruction so the skin island where the nipple should be was about a three inch circle and the lump was just under it. Like you she had surgery to try to remove the lump but the margins were compromised. She was started on more chemotherapy having already had 6 FEC; this time TAX and I will phone to get an update.
The treatment really is variable for each person in each district. Will it help to press the BCN if she is any good to give you some idea of what to expect?
Good luck
Jane x
Hi, Thanks Jane for posting this info regarding your friend, its good to know that I am not alone. Have been told that Oncologist will make a decision on treatment required after results from MRI, CT and bone scan. Really stressed again with the unknown and the waiting for scans and results.
Hi Suzi
I rang my friend but it appears se is at a family funeral this weekend. Her partner says that he is not sure what is going on with the treatment but that he thinks it is going well as she seems pretty much okay in that she can still drive and clean the house. Helpful eh?
Will keep you posted and good luck.
Love
Jane
Unfortunatly the waiting always seems endless and allows your head to go into overdrive-am sure many others here will agree.Try to keep yourself busy doing things you enjoy and dont think too far ahead-take things one day at a time.this advice sounds good but l know from experience its flipping hard so just do your best!
sending best wishes and a hug.
sharon x
Hi Suzi
So sorry to hear this. I found my recurrence harder to deal with than my primary…so I really feel for you. Can I ask whether your recurrence had gone into the skin?
I had a multiple recurrence in the skin of my LD flap recon (skin sparing mast.) November 2007. It was actually tumour nodules x 3 and because of unclear margins and the fact it had gone into my skin in more than one place, I lost my reconstruction. (However, I am already post op from having a DIEP recon replacement).
As soon as you have a recurrence it is standard practise to have whole host of scans done to check for spread.
Not sure if this is exactly the same as you, but let me know if I can be any help.
Sending you love and luck
Nikki
Hi Nikki,
Thanks for posting info good to know that I am not alone. I am waiting to see oncologist so do not know what next steps will be. Did you get any more treatment following your recurrence? Not really sure what to expect, still waiting on MRI and CT scan which is torture as mind racing yet again.
In one way want to see oncologist asap but in another scared of what they will tell me.
Once you had whole reconstruction removed was your margins etc clear?
Any more info you can provide me would be most appreciated.
Thanks
Suzi x
Hi Suzi
My treatment was mastectomy or rather removal of reconstruction followed by tamoxifen and radiotherapy. I wanted chemo because I am now a high risk for mets, but because the tumours were still low grade this and the fact it had spread to the skin via my blood rather than lymphatics indicated that chemo wouldn’t be effective.
The margins were clear after they removed my recon.
I think you definitely need to find out if the recurrence has gone into the skin…? If it is in the small amount of breast tissue left in your recon, they may be able to do another another excision, in attempt to get clear margins. However, I will warn you that they may advise removal of the recon as they will want to make sure that there is nothing ominous on your chest wall that is being hidden by your recon. implant, if you have one.
Keeping my fingers crossed for you, and do let us know how your scans go…
Nikki xx
Hi everyone 16 months after diagnosis plus chemo, radio and now on my 12th Herceptin I was horrified to find a small hard tender lump in the same breast. I am absolutely terrified! I have been coping so well now I fear the worst. I have appointment with onc tomorrow and will have to wait and see, but I am dreading tonight and all the fears that come in the early hours.
Some hugs urgently needed.
Judy x
Hi Judy,
I know exactly how you are feeling I am in the middle of getting scans following a recurrence, have been told by oncologist that need more chemo and been referred for clinical trials as previous chemo obviously not worked.
It is the unknown that causes the most stress and i keep thinking Why Me!!! It is true when people say its like beening on a rollercoaster as one minute i am fine and the next i am in floods of tears.
You are not alone,do something nice tonight,good luck for tomorrow.
Take care
Suzi x
Suzi and Judy, you have my sympathies, I know how you must be feeling. I was diagnosed with a recurrence/skin mets along my mx scar just 6 weeks after finishing radiotherapy. I had previously had neo-adjuvent chemo of 4 x AC and 4 x Taxotere. After all that treatment I believed that the cancer had gone and had set my heart on having an LD flap reconstruction (sadly, the recon is probably no longer an option for me and I’m finding this hard to come to terms with, not to mention the shock of realising that my prognosis is not that good). On a more positive note, since January i’ve been on a clinical trial, taking the oral chemo Xeloda (capecitabine) in combination with a new drug called Sutent (sunitinib). I’m pleased to report that the skin nodules have almost disappeeared and ct scans show that so far there is no spread to other organs. I have had various side effect but I’m battling on and am managing to carry on working almost full time.
Suzi, I hope that you don’t have to wait too long for the results of your scans. I found that that I was much calmer once I knew what my treatment plan involved.
I’m sending you both my best wishes.
Liza R x x
Suzi I keep hoping its nothing but feel as though I am kidding myself. Sorry that you are going through the same thing. The thought of chemo again is horrifying. I wonder if they will continue with the Herceptin - I had such hopes for it.
Liza thanks for your good wishes. I think you are brilliant working full-time. (I am retired) Pleased for you that it hasn’t spread.
Take care
love Judy x
Hi,
Lizaray glad to hear that i am not alone. Scan results have shown that have involvement in lymphnodes and skin mets. Sounds similar to your experience. Going to see about commencing clinical trial next week, and feeling less stressed now that have results. Have you been on the clinical trial long?
Judy try and stay positive (I know thats easy to say)Have you got an appointment soon or any scans booked? Let us know how you get on.
Best Wishes to you both
Take care
Suzi x
Hi Suzi, I’m sorry to hear about your recurrence. It’s cr*p isn’t it!? Yes,your experience sounds very similar to mine. I have one lymph node affected which the last ct scan shows has shrunk by 3mm since I started on the trail in January. The Xeloda really has knocked the skin mets back, there’s just a couple of pinkish patches there now whereas before treatment the nodules were very red, raised and itchy - it was so frightening! I really hope that you have good results on your trial and that you don’t suffer too many side effects. Let me know how you are getting on.
Judy, I hope that you don’t have to wait too much longer for your results and I wish you all the best.
Take care ladies. “LizaRadley” x x
Hi all.
HELP NEEDED !!!
Been to see consultant today regarding a clinical trial following my recurrance.I have been offered a phase one clinical trial and was told that there was only 5% chance of it working.Totally confused and stressed again as impression that i had was that they would match my condition to a trial however seemingly not you get put on any one that is available.
Don’t know what to do now as scans have shown that bones, lungs and liver clear however cancer in lymphnodes, skin mets on reconstruction and area across sternum area. Fell that i am now sitting here waiting on it spreading and options very limited.
Any suggestion or words od wisdom would be most appreciated.
Suzi x
Suzi, I’m sorry to hear this. I’ve been checking this site for the past few days to see if you had any news.When I was diagnosed with skin mets I was told that there are several chemo options they could try.What was your chemo for your primary? I had 4 x AC and 4 x Taxotere last year and since this didn’t get it all I started on the Xeloda (Capecitacine)tablets and from my understanding this is what they ususlly try next when Taxotere has failed. I’m triple negative btw.
I know that you are in a scary place at the moment and I really hope that you can start some treatment soon.
I’m sending you my very best wishes. Liza xx
Hi Suzi
I’m sorry to read that you’re stressed and confused about what to do next.
I have a regional recurrence in my neck and chest wall and my cancer is terminal though technically its still on the stage 3/4 border.
I have exhausted standard chemotherapyy options (had AC, taxotere, xeloda, vinorelbine (twice) taxol, carbolplatin and gemcitibine) and have considered but decided not to go for a Phase 1 trial.
There are basically three kinds of trials for patients: phase 1, Phase 2 and Phase 3. A Phase 1 trial is the first trial of a drug after the animal and laboratory testing stages. The main purpose of a Phase 1 trial is to test the dose levels and check for side effects in new drugs which have looked promising in the laboratory. The trial may bring clinical benefit for the patient but this is not what is being tested. Some trials may promise more than the 5% benefit which you have been told (some reports say up to 30% or even more) but this benefit may only mean that the drug delays progression for a relativeley short time…long term survival is not being measured.
For myself, having so much chemotherapy has knocked me out, and after a good deal of agonising I decided that for now I’m not going to pursue a trial. I accept that my cancer is incurable and am hoping to get as much time as possible with ordinary palliative care.
Have you talked with your oncologist about whether s/he considers your recurrence incurable or not? You may be someone who wants to try anything ‘just in case’ or you maybe someone who feels the disadvantages of doing a trial outwiegh the advantages.
Which trial is your oncologist recommending? The one I might have been suitable for one of the Phase 1 trials on a group of drtugs called PARP inhibitors. I am sure that if you are being recommended for a trial that it is one where your type of cancer and previous treatment matches the criteria for the trial. You will get lots of monitoring and testing on any trial, and this is something which many people welcome. Many people also feel that participating in a Phase 1 trial is am important altruistic gesture for future patients…and it is.
I am so sorry you are facing such difficult decisions…ask lots more questions until you are more sure that you are doing what feels right for you.
very best wishes
Jane
Hi Suzi,
just caught sight of your post and wanted to send you a big cyber hug. Just a thought, would a second opinion help you? It might throw up another option or even be worthwhile just to give you a little more confidence in what they are saying to help you go forward, if they agree.
Wishing you lots of luck
Lily x
Hi,
Have got an appointment for early next week with consultant to discuss options. I have also spoke to GP and if not totally happy with outcome with consultant then referral to Royal Marsden an option.
Thanks for all you support and advice so far.
Suzi x
Hi Suzi again
I had a second opinion at the Marsden last summer…very helpful and good in clarifying my options.
Good luck
Jane