Breast Cancer Now Forum

Hi Girls I did get my full report Helen for myself, but my cousin was only told over the phone (1 day before going on her hols!) that she was Braca 2 postive. Its only when I started ringing the genetic teams in Southampton and Manchester that I obtained this snippet of info. I have read that Exon 11 is linked to insulin and thats as far as I go. They have promised to send me the report on the check of my bloods in 10 days, so I will perhaps get my info then. I have already asked the questions about having a bi-lateral, I had my ovaries (but not fallopian) out 6 years ago. Have they offered you any further treatment Helen? Thanks for replying girls. x ... View more

My cousins blood results have come back and she doesnt carry the rare variant that I have so back to square 1 !! It seems so strange that we both developed multi focal BC at near enough the same, and that we were so both strongly 100% oestrogen. My Aunty, Julies Mum passed away with ovarian which is another strange link? I am going to speak to my oncologist in May to see if she can guide me further. x ... View more

Hi Liz Not been on the site for a while, sorry to hear about the op being cancelled, hope that they slot you in very soon. Still not heard from my cousins bloods so everything still up in the air. Hugs to you all xx ... View more

Hi I had a lumpectomy then a mastectomy, and a couple of months later found a lump at the end of my scar. I was like you and went into free fall, my consultant took a sample and the results came back as fatty tissue. My surgeon 'then' remembered that she had gone 'back in' to check my lymph nodes and must have caused the problem. It could be scar tissue which is very common. I know that it is very easy to say try not to worry because everything at the moment is still very raw for you but try to remember that there are other things that it could be and scar tissue is one of them. Lots of hugs for tomorrow. Much love xx ... View more

Hi everyone Thanks for your replies, your comment made me smile Liz yes I would appreciated you letting me know how you go on. I have an unknow variant of 'unknown significance' in the Braca 2 strand, my cousin (same diagnoses) has just had her bloods taken to see if she carries this same gene, then it will be sent to the Wessex labs to check it further. If that result comes back positive then I will have to think about the surgery. The first time I didnt hesitate, and I have never felt the need strongly enough to have recon, and that is what I am pondering now. My OH has never acknowledged the loss of my breast in nearly 7 years and he doesnt seem to want to be involved with this decision either, so thats why I was asking your thoughts girls. Thank you Debbie x ... View more

That makes sense Niki with regard to the release rate of the drug, if its faster then you are going to get more severe side effects, glad that you got your meds changed hope it eases for you? My GP informed me that it isnt the actual practice that loses the money but the chemist? ... View more

I had the genetic testing done and it was found that I had a 'variant' gene on the Braca 2 strand. My cousin who also has had bc 2 years ago with exactly same diagnoses - multi focal - 100 % ER + (seems a bit of a coincidence) and her Mum had ovarian ca at 65 years old has just had her blood taken yesterday as they are going to send it to the Wessex labs to see if she also carries this gene then it will have further testing to see if it is a ca causing gene (8 weeks) which is I suppose quicker than my initial testing. Hoepfully this will help others who have this variant, because if I had not pushed it forward it would just have been left at that. My next thoughts are if I should have another mastectomy and reconstruction. Are there any ladies out there who have not had reconstruction done as I would totally appreciate you thoughts please. ... View more

Hi Girls As I mentioned before my cousin is having a reaction to the generic version of Arimidex she saw her GP today who at first told her that there was no chance she would get Arimidex which she accepted, but she felt so bad on it that now her GP had given her 2 months of Arimidex which she is going to try, her Doctor also mentioned that she had other patients who also could not tolerate the fillers! What do they add to the inhibitor to have such a bad reaction? ... View more

Just beautiful...much love and respect to you Clare xxxx ... View more

Hi Gaynor I too was on Zoladex for a few months then because my Aunt had ovarian ca I thought that it was best that I have them out which I did about 4 months after finishing chemo, and I dont regret it. People mentioned that because it takes you straight into the change it was bad, but I havent found that. I was going to get the symptoms anyway so at least I have the peace of mind of not worrying about my ovaries and then I was put on Arimidex which I have been on ever since - 6 1/2 years With regard to wanting to know when things get better, my thoughts are that it takes at least 2 years before you start to get little moments when you have some peace away from ca thoughts. It does get easier please believe me, but there has to be a healing time and I found that you have to work at it. 2 years after my treatment I asked myself what really makes me tick and it shocked to me to think that I didnt know, so thats what I did. I have always loved animals and my children had grown up so I started to walk, because I felt it was my mind that needed to heal. The body automatically comes back but the mind takes a lot, lot longer especially after what we have all been through. So now I go walking with my three Lancashire Heelers and I go miles, I sing, take my flask and some food on a long walk and even if I am stressed going into the walk, I always come home smiling and at peace! So perhaps you could use this time to think about yourself, and I do know that there is a medical paper somewhere that was posted many years ago on this site, I think that it was called 'What Next' I found it very helpful. Just be very very kind to yourself, try to move forward in tinysteps, you will get some good days and some bad, but maybe we would have had some good/bad days even without the ca? You could always speak to your GP to see if he could help, I did think of this myself during tough times but decided against. Much love Debbie :)) x ... View more

Hi Christine It does take a while for you to get your head around the diagnoses, treatment, termonology and drug names, but your will get there!! 🙂 My understanding is that Tamoxifen and the armatose inhibitors are used when someone is oestrogen positive, so perhaps you are Her 2 and oestrogen positive? Arimidex was given to me when I finished my chemo so I am sure that you will be given Tamoxifen soon, I dont think that it affects the Herceptin but you should ask your oncologist. Dont be frightened of taking a pen and paper in with you and ask all the questions you want. If you are oestrogen + then you would go onto Arimedex or such like when you have gone through your change, because it works in a different way to Tamoxifen. I too couldnt think about the next 5 years but here I am nearly 7 years on (touching lots of wood) and believe me when I say that time is a healer, just be very kind to yourself. :)) ... View more

Hi Christine As far as I am aware Arimidex is for when you have gone through your menopause. I was put on Tamoxifen for a short while after chemo (age 46) then elected to have my ovaries out as I felt that for me that was the best choice then I went straight onto Arimidex which I have been happy with. I have heard that they like to give Tamoxifen (which was always gold standard treatment) then onto an inhibitor after you have gone through your change. I am sure that some on the girls could advise you better? Regards Debbie x ... View more

Thanks Liz for bumping up that thread for me, I hadnt seen it x Well, I rang the company that produces my Anastrazole and was put through to their technical dept. A very nice gentleman asked me my symptoms then told me that he thought that I was having an adverse reaction to the drug and that I should contact my GP. I had already made an appt to see him that afternoon. My GP left me a message a couple of mins later to say that he had received a fax from the company asking for feed back on my probs...quick or what? After talking to my GP he explained to me why generic drugs were now being prescribed and I totally accept that financial issues are a part of everyday life now, but these drugs are not just to help with a cold, these do a very big job, and if some people seem to be having serious side effects then the pharmacutical companies need to be told so that they can rectify the problems caused and it must be with the filling agents? I was grateful that my GP had know me for many years and knows that I am not someone who would ask for a change in my meds if I wasnt having serious problems and without me prompting him at all he changed my medication straight away. I have been back on Arimidex for 3 days and apart from the ususal aches and pains which I can and will tolerate the other problems have gone away. My cousin was also diagnosed with BC over a year ago and has been put on the generic anastroazole (Tiezer?) and is also having the most terrible side effects but has been told by her GP that there is no chance of her getting Arimidex, surely this cant be right. There seem to be so many people saying that they are having similar side effects. I also noted that one of the postings mentioned problems with their bi-phosphates which I also take. I have also had this changed and have recently noticed that I am having stomach pains and aches so I will keep my eye on this one as well!! :)) ... View more