Breast Cancer Now Forum

Hi I am based in Dublin and also had problems getting tested, despite gettiong diagnosed with TNBC just before my 46th Birthday, until I had a recurrence last year, 3.5 years fromm original. I went back and asked again and I'm glad I kept the pressure on. I had the blood taken last month (on Valentine's Day, lovely!) and will have the results in 3/4 months. At our National Genetics Centre they told me that they have recently decided to offer testing to any woman 45 or younger who gets TNBC - I guess the protocols are constantly changing. Katie ... View more

Hi I live in Dublin and can highly recommend St Vincents. When I went to my GP (back in 2007) on a Tuesday, I was seen on the Friday at the Breast Clinic. Definitely time to 'jump up and down' with your GP in Ireland. Best of luck Katie ... View more

Hi Girls, Just coming back to you about having CMF for a recurrence... My onc initially said that I probably wouldn't have chemo, but when we had the consultation after my MX & Recon he said it was 50:50 whether I shoudl have some chemo but on balance he recommended a course of CMF. I guess I could have said "no thanks" but I couldnt live with that. I think he was also influenced by the fact that it could be genetic and therefore more likely to return. I had asked for genetic testing when I was diagnosed in 2007 but at that time was deemed to be medium risk and they only test if you are high risk. One of the criteria is how many people in your family have had breast/ovarian cancer. In my case both my Mum and I have had hormone negative BC. My Mum had it at 54 and is now nearly 79 without recurrence I'm glad to report! As Mum is an only child and I am an only girl, we have had a 100% hit rate, but that doesnt count! Anyway my onc wrote to the genetics people again when I had my recurrence last summer and they have now deemed me to by High Risk (of the gene) and they are going to test me soon. Finally, in recommending CMF my onc mentioned that recent studies have shown benefits of CMF in treating Triple Negative and if you Google 'Triple Negative and CMF' you will see these studies. I hope all that explains why I am getting CMF (nearly finished now). I am also interetsted to hear what your Oncs say about it! Best wishes Katie ... View more

Hi Gingerbud I had already has Taxotere and Cyclophosphamide in 2008. When my onc recommended CMF for my recurrence, he referred to recent studies relating to triple negative - here's one I found which did really reassure me as initially I thought "a strong chemo (TC) didnt work so why am I getting a 'lighter' chemo now?" http://annonc.oxfordjournals.org/content/early/2011/06/29/annonc.mdr309.full If you Google ' Triple Negative and CMF' there are a few studies out there. Hope that helps. Best wishes Catherine ... View more

Hi Jo, Sorry to hear what you are going through. I had a local recurrence of Triple Negative BC last June, 3.5 years after original DX. It's a big blow and the waiting for scan results is incredibly stressful. Fingers crossed all will be OK. Like you, my recurrence was very close to the original tumour. I didnt have any spead, thankfully and it was only 7mm - previous one was 2.6cm I had a mastectomy and reconstruction in July. I went for the LD procedure as the one using tummy fat, while appealing initially, has a longer recovery time, but your surgeons will guide you. I am on month 5 of a 6 month course of a chemo combination called CMF. Its a very old regime but recent studies have found it effective in Triple Negative, so I am hoping this time it will nail it for good. MDTs are Multiple Disciplinary Teams, so the surgeons and onoclogists are involved in creating an overall treatment plan. If there is anything I can answer for you, please ask!! Best wishes Catherine ... View more

Hi White Feather So sorry to hear your news. I was diagnosed this summer with a local recurrence after 3.5 years, also no nodes at original diagnosis. It doesnt appear to have spread but as my oncologist says there is still a 10/15% chance that it has I am having a couse of CMF chemotherapy. I ma so sorry to hear that yours has spread further and I wihs you well. Katie ... View more

Hi, I recently had that choice... I had TC chemo 3.5 years ago, TN, Grade 3, 2.6cm, no nodes. I also had lumpectomy & rads. Recently I've had a local recurrence so have had MX and LD reconstruction. Initially my onc said that the tumour (which could be cells that survived original treatment or a new primary - they dont know) was so small 7mm that he probably wouldn't recommend further chemo. However when I met him last week he said it was debatable and he wouldnt twist my arm but on the balance of things he would recommend a course of CMF. He said it would reduce my chance of recurrence/spread which are 10 -15% by a third i.e. 3 - 5%. I think its worth going through. It might come back anyway, but at least I'm doing anything I can to reduce the odds. Best wishes Katie ... View more

Hi Just a little update . I'm in hospital having had the mx and ld recon a week ago. The tumour was TN and grade 3 again but v small at .77cm and no spread. So it's good news considering, but I'm still worried that some cells survived surgery chemo and radiotherapy, as that breast had the works thrown at it!! has anyone had a similar experience? Katie x x ... View more

Hi Girls, Well the good news is that the PET scan is fine - it did show something on the liver but they convinced me there was nothing to worry about and a liver MRI has confirmed that all is good. I had a Sentinel Node Biopsy on Weds and will have the result during the week. Hopefully there is no lymph node involvment and I can get a date for the mastectomy and reconstruction operation. Feel like I am in a weird limbo very hard to plan anything. I'm trying to keep busy so the time doesnt drag! Katie x x ... View more

Hi, Well its 'D' day tomorrow - I will get the PET scan results. Hopefully no spread...It will give me a real lift if the news is good. I will keep you all posted. Thanks for the support! Katie x ... View more

Hi Ruby, My latest is that is a new tumour, very small <1cm, which I am hoping means the b*gger hasnt had a chance to spread! I'm having a PET scan tomorrow, Friday and I think they will give me the results on Tuesday next. As you rightly say, the waiting is torture! Next Weds I am going in for a Sentinel Node Biopsy as it will determine whether I need full axilliary clearance when I have the mastectomy. If I need full clearance I cant have recon at the same time... The BC nurse did say that they have lots more tratment for 3N than they did 3 years ago and she said that a huge amount of focus by the profession is in the area, whereas a few years ago it was all on Her-2/Herceptin. So that is some bit of consolation I guess! Delighted to hear you are doing so well after the Op. Katie x ... View more

Thank you for your comments. I know that if it is another tumour it could be a different type but its right beside the original site so I imagine it will be the same - all will be revealed in time! Horace, to answer your question I originally had 4 x Taxotere and Cyclophosphamide. The onc usually gives 6 if you have node involvment but I didnt. I had 5 weeks of radiation too. I'm off to get some beta blockers in the morning as I really need to calm my nerves, still have 5 more days to go... Love Katie ... View more

Hi Laura and Gingerbud- thanks for getting back to me. The wait till next Friday for the results is torture! Even though I'm pretty certain that it is a recurrence I have decided to fix on the mantra "it could be nothing" and to visualise them smiling and telling me its benign scar tissue or something.. It's the only way I can stop my head exploding. I'm in Ireland and my only child is in the middle of our equivalent of A levels, so that is my main focus and a good distraction. I will keep in touch! Katie x ... View more