Breast Cancer Now Forum

Hi Molly, Fab question - why didn't I think of it myself? There are not many of us about with 'micromets'. I had two cell clusters in the sentinel node. Apparently they added the size of the clusters together and mine came to a total of 0.9 mm. Before SNB I was told by my surgeon that any trace of cancer in the lymph nodes would mean a second op for full clearance. However even though I have 'micromets' there was no second op or full clearance. I didn't even question it at the time - was in too much shock - but it was only afterwards when I read up on BC and lymph node involvement that I got myself into a right state about it. I am ER- PR+ (89%) and HER-2+++. My treatment was lumpectomy followed by 3 x FEC, 3 x TAX, 30 rads and Herceptin for 1 year. Currently on tamoxifen for my PR status. I was told by my onc that I was being treated as 'node positive'. He said some Onc's would treat as node negative but some 'err on the side of caution' and treat as positive. If I had been node negative I would have been given 6 FEC but because of micromets, and as eal69eal above says, was probably given TAX because of Her-2 status. My onc said he would treat me as a Stage II (my tumour was 1.7 cm - Grade 3). There are two prospective studies in the US (I think) looking into the significance of micromets - I was told my onc that it is only in the last few years that they have been able to test for micromets. I will dig out the paperwork I have found to date but not sure if I can post links - maybe the moderator can help me out here please?? My understanding is (and I may be wrong so please check):- (a) Upto 0.2 mm - this is considered as an isolated tumour cell or ITC. (b) Between 0.2 mm and 2 mm - this is considered a micromet. (c) Above 2mm is considered a macromet or positive node. Have I been overtreated with chemo or undertreated by surgery? These questions still rattle around. I have never asked my onc since as there doesn't seem to be much point, I should have probably been more assertive just after surgery but really wasn't in a position to do so. Some hospitals will go for a full clearance, some won't - think it depends on the surgeon/onc discussions and protocol for that particular hospital trust. I am not sure if you will get a definitive answer - I think this is one area where they simply don't know yet so in some respects I trust my onc and am glad he is erring on the side of caution. I was in a desperate state one day and actually rang the helpline here but to be honest I didn't receive an answer, just really that the care I had received seemed to be gold standard! Hope someone can come along with a bit more info on micromets. Love xxx ... View more

Hi Starfish, You are the first person I have come across with a similar dx i.e. ER-/PR+ and HER-2+. I don't feel so much on my own now!! I only found out I was PR+ because I was nosey and looked through my chemo notes which the nurse had left on the table! Like you, am quite happy to take anything they can give me as I have two young children but I would still like to know a bit more about PR+. Love xxxxx ... View more

Hi Christiane and Annamarie, Glad this thread has popped up again because I keep wondering about PR. I am like you Anna ER- but PR+ (89%) and I am currently on tamoxifen. I can't find much information on the internet about ER-/PR+ except that it only occurs in about 5% of breast cancer patients. At my consultation I was only given statistical benefits for surgery, rads, chemo and herceptin so have no idea how much tamoxifen will benefit me. If I find anything worthwhile on PR+ only I will post back but don't hold out much hope. Love xxx ... View more

Been away on hols so only just catching up with posts. Came across an article yesterday in the Liverpool Echo celebrating 60 years since the formation of Marie Curie Cancer Care in particular how the charity works with children. The headline 'Notes to Mum Help Grieving Kids Cope'. Every time this topic comes up it means tears are never far away but I was pleased that awareness is being raised about this desperate situation that some families find themselves in. Take care everyone. Love xxx ... View more

Hi everyone, Have read the article and think that if this lady wants to move on and can move on from her bc dx then good for her. Didn't like the headline though. Love xxxx ... View more

Hi Ruth, Like Mary above, waiting for OH to come home with it - where is he??? Love xxxx ... View more

Hi Sue, Along with everyone who contributes to this thread, I will be thinking of you and Simon tomorrow and Friday. I know you and Simon will both be strong for each other and I do hope you have lots of support around you both. Lots of Love xxx ... View more

Hi Sweetpea, Sorry that you are having this additional worry at a time when you should be enjoying your pregnancy. I think you have done the right thing by seeing your GP and I think your GP has done the right thing in referring you to a breast clinic. You probably won't have a mammogram because you are pregnant, more likely to be ultrasound. I think you have to try and not worry (easier said than done I know) and just concentrate on looking after you and your baby for now and hopefully they can get you a quick referral. Please let us know how you get on. Love xxxx ... View more

Hi Cherub, I was told that the 2 year period starts from dx and like you was under the impression that this was particularly crucial for Her-2+. However, I have read somewhere either on this forum or another internet site that because of Herceptin the crucial time for Her-2+ is now 3 years from dx. No idea how true this is. ChristineMH and dawnhc are to Her-2+ info what janeRA is to triple neg on info for these types of bc so maybe Christine or Dawn would know the answer to this particular query. Love xxx ... View more

Hi Neenie, Bit similar to you in that I have some unaswered questions really - I am HER-2+, ER- and PR+ (89%). Have finished all my treatment bar tamoxifen. Have been told I am in a small group of women to be ER-/PR+, will get benefit from tamoxifen but that's it no more info and I can't seem to get much info from the internet about it either. Frustrating isn't it. I was dx in May 2006 and am still wondering. I also have 2 micromets (less than one millimetre in total size) in one lymph node and I can't seem to get much info about this either. Have found some trials that are doing retrospective testing re micromets but don't know how much this will help me because treatments have changed so much and the testing is being done on tumours from at least 15/20 years ago. Also for me with the micromets, I didn't have a full clearance and what I don't understand is I remember my surgeon saying that if he found any trace of cancer in the nodes I would have to have a second op, yet he found 2 micromets but I didn't have full clearance - still chewing over this as well. With regard to pregnancy, I was actually 30 weeks pregnant at the time of dx but just like Lilacbushes I was told not to get pregnant again - didn't go into it at the time as was in such a state of shock (39 when dx). The thing for me is that I go to my clinics armed with questions to ask (if I dare - do I really want to know the answers??) but as soon as I get into the waiting room nerves take over and I'm just a quivering wreck. Sorry I can't help you with your specific problem but just wanted to let you know that I think there are quite a few of us out there with questions that remain unanswered. Love xxx ... View more

Dear Sue I was so very shocked and sorry to hear about Lisa. You surrounded Lisa with love Sue. You were always there for her, caring for her and loving her every step of the often difficult way. If Lisa could have been cured by love alone she would have been the healthiest girl in the world. Having lost my daughter to a brain tumour, I wanted to pass on something that gives me some strength when I’m feeling desperate: You can shed tears that she is gone Or you can smile because she has lived. You can close your eyes and pray that she’ll come back Or you can open your eyes and see all that she’s left. Your heart can be empty because you can’t see her Or you can be full of the love you shared. You can turn your back on tomorrow and live yesterday Or you can be happy for tomorrow because of yesterday. You can remember her and only that she’s gone Or you can cherish her memory and let it live on. You can close your mind, be empty and turn your back Or you can do what she’d want – Smile, open your eyes, love and go on. My thoughts are with you, Lisa, Simon and the rest of the family. I hope someone is also looking after you Sue. As you can see by the length of this thread you and Lisa were so well thought of. Take care and lots of LOVE xxxx ... View more

Hi everyone, JaneRA - agree entirely with what you say about needing someone to 'pick up the ideas explored here and run with them...fast' - anyone out there willing to put their name forward to start the ball rolling?? Kay123 - again, I think you are right with your 3 steps but I think there is also a 4th step that could be explored - the future without a mum (wow it really hits home there - sorry). For example, I was listening to a radio show a couple of months ago now and the DJ was talking about how in one school in England they were not going to celebrate Mother's Day by making cards with the children etc. The DJ was very scathing along the lines of ...'another thing they are trying to ban and it isn't on really.....' etc. I just burst into tears listening because I thought how insensitive he was - was he so lucky to have his mum around, a mum who wasn't ill? Does he not realize that there are children out there who don't have a mum? How would my children cope at school when all the other children were making Mother's Day cards etc? Pinkdove - I think your son is dealing with this so well, maybe both you and your son could contribute because your son seems to be dealing with it in a way I would like my children to deal with it. The same applies to you Kay123 and your son. Coping techniques - I just wanted to add my thoughts (for what they are worth), speaking for myself and not anyone else - I have memory boxes containing things from my little girl who died. When those tears flow I actually cannot cope with touching/smelling any of her clothes, things she made, even looking at her photograph, it seems to make my grief worse - what actually helps me is a verse sent to me by the oncology school teacher at the hospital - I read it and somehow it gives me strength. When my time comes I will want to make sure I have made up memory boxes for my children but I will also want them to have a coping strategy. Trouble is, we all have different ways of dealing and coping with things - any ideas? If this resource book/pack does get underway, would there be scope do you think for it to cover children of all ages but also be a book to dip in and out of (that sounds really clumsy - sorry) because (hopefully) our children will grow up and their understanding will change as they grow. Love to you all. xxxx ... View more

Hi Sophie, If it is Walton as in Walton/Fazakerley Hospital in Liverpool where you will be having your surgery, then you will be in very good hands - the neurosurgeons we have dealt with as a family are Paul May and Connor Mallucci - on another thread you mention Mr Broadbelt - I think we have also dealt with him (very tall guy). They are very professional, dedicated and incredible surgeons. Will be thinking of you and your children on Friday - hope all goes well. Love xxxx ... View more

Hi everyone, Haven't been able to post a reply back as this thread is so emotionally hard to read. Have been thinking though about the lack of support/information out there for children and wondered whether any of you have thought of getting together to put together some sort of booklet/book/pack that would help as unfortunately you really do have first hand experience of what this nightmare is like. When I was pregnant first time round I read a book called 'The Fat Ladies Club' which was written by 5 women who had met in their ante-natal class. They also wrote a second book called 'The Fat Ladies Club' - Facing the First Five Years. Sadly, one of the mums died from cancer (can't remember exactly which type of cancer but don't think it was breast cancer) so it does touch on the subject of bringing children up without their mum. There was also the young teen who wrote 'Chemo and Cakes' about her experiences of going through cancer treatment and again because of the lack of information for her age group she decided to put together this book - J K Rowling insisted on presenting her (I think she was called Chloe) with a Pride of Britain Award. Love to you all xxx ... View more

Hi Lanterna, Not sure whether this will help but I was dx in May 2006 with a 1.7 cm tumour, Grade 3, ER-/PR+/HER-2+++ and with 2 microscopic cell clusters (micromets) in the sentinel node measuring in total less than a millimetre. My treatment was lumpectomy, chemo, radiotherapy and then herceptin. On dx I was told by my surgeon that if he found any trace of cancer in the lymph nodes then they would be all taken out in a second surgery. This never happened and to be honest I didn't question it at the time because I think I was in such a state of shock. It is only now after treatment has finished (with the exception of tamoxifen) that I wonder why he didn't do a full clearance - however, I did overhear some of the oncology doctors talking at the hospital (which is a centre of excellence) and through earwigging discovered that the protocol in some hospitals for people with cancer in 1 node is not to do a full clearance but to have radiotherapy instead. It seems to vary so much from hospital to hospital. Is there a reason you are having a mastectomy rather than a lumpectomy? So far I haven't had any problems with my arm except on my very first chemo when they had to use my affected arm and yet for the rest of my chemo and 18 herceptins they were able to use the unaffected arm, but as I say don't have any problems at the moment. Love xxx ... View more

Hi Jenny, Sorry, feel like I am ambushing this thread as I have a primary DX at this time - but I was just interested in how other people deal with telling their children. My children are aged 4 and almost 2 - I was diagnosed when I was 30 weeks pregnant with my youngest child having lost my daughter (aged 4) three months earlier to cancer. I haven't told my children about my illness because having lost their sister I am sure they would automatically think that they were going to lose their mum as well. Like you, I don't want to burden them at this age but my eldest will be starting school in September and I will have no control over what is said to him in the playground - so do I tell him before someone else does? I try to explain all sorts of things to my children in a manner in which they understand but am at a loss as to what to do here. Any suggestions would be very welcome. Love xxx ... View more

Hi Sophie, When you say Walton Hospital do you mean the Walton Centre at Fazakerley Hospital in Liverpool? If so, there are two neurosurgeon's that I have dealt with in the past. The Consultants were Paul May and Conor Mallucci - they are incredible surgeons and very dedicated. They work at the Walton Centre which is a centre of excellence for neurosurgery, neurological disorders etc. Love xxxx ... View more

Hi Debs, There is a post on Forum Feedback headed - No. 10 - We must be referred started by Jeannie which I think will interest you - Jeannie was misdiagnosed and has started a petition to campaign for breast screening for younger women. Love xxx ... View more

Hi doylej In an episode from Dr Who (the one with the Daleks and Christopher Eccleston as the Dr - not that this is important), there was a line which ran along the lines of .... why make one cure when I can sell thousands of palliatives ..... Does make you wonder sometimes! Remember also that chemo has a cumulative effect as well, the more you have the longer it takes time for your body to recover, plus in my case it was the steroids that kept me awake. Hope you can get some sleep tonight and have a better day tomorrow. Love xxx ... View more

Hi Annie, Just wanted to say that I hope surgery goes well for you next week - do you know whether you will be having a lumpectomy or mastectomy? For me the hardest part was being away from home and my family - it was only for two nights but it seemed like an eternity. Glad to hear that your baby is doing well - have the night feeds stopped or reduced to allow you to get some sleep? Sleep deprivation with a young baby is bad at the best of times but to have chemo as well is a nightmare and it sounds like you have been through the mill with side effects. Hopefully no more chemo for you now. Will be thinking of you next week - another stage of treatment will soon be over. Take care. Lots of Love xxx ... View more