Breast Cancer Now Forum

Thanks Meg, that is a good point about changing gears as I do have very painfull hands and a dodgy arm. I had an automatic capri many years ago and I loved it. Off to the footie now in the piuring rain. June x ... View more

Val so pleased you have a brain and even better that it is met free. I was looking (online) today at mobility cars. Automatic might work for us as I am trying to get my husband to learn to drive. At the moment I have to drive myself the 230 mile round trip for treatment. I believe your profit is 2,900 per cent. Maybe you should get youself a wee job in the cabinet looking after the country's budget! June x ... View more

Magda, you are correct that feeling on wakening does pass and I didn't explain that. Apologies if that caused any distress. It is not the first thing I think of any more. June xx ... View more

Coca, it is too soon for you to get you head around it. One of the worst thngs for me was on wakening and having that feeling that sonething is wrong and it takes a few seconds to remember. It was like being given the news afresh after every sleep no matter how short that sleep was. You do get used to it. For me I have coped well. The only time I don't is when my treatment is being messed around and I get very frustrated. I wont lie to you though, for me, it is never out of my mind. It is just avdifferent way of living. Life will never be the same but there are al ot of positives too. Living for the moment and appreciating each good day. A lot of cliches but true (for me anyway). June x ... View more

Coco, I can't really add to what Katie and Nicky have said. When I was first diagnosed I was heartbroken and it does take a bit of getting used to. I also read this whole thread there are so many inspiring people. I only found out what questions to ask about treatment, etc. through everyone on here sharing their experiences and giving advice. June xx ... View more

Vercors, that is excellent news. No point in asking if you enjoyed the book if you are purchasing another Ken Follet for holiday. Val, thinking of you today. I hope rads went well. I am just back from latest CT scan. Dye leaked into my arm and I now have an uncofortable swollen arm. They say they got enough dye into the vein to give them a good image. June ... View more

Val, thank you for repling to me that is a huge help. I feel if I am going to question who the referral is with I have to come up with options. Belinda as I am not stable that is maybe who I am not been offered surgery. So that may be a valid point. They way I am now looking at my treatment is this though. I live in an island off of Scotland. I am being treated at Raigmore which is a general hospital. I have Invasive Lobular cancer and this represents around ten percent of cancers. I presented at diagnosis (well I presented for many years with what they said were cysts but that's another story) with secondaries. It may well be that they have not a lot of experience of someone with my diagnosis. Maybe worthwhile asking that question. On the book front I have ordered Khalid Hosseini's new book because I loved his first two. I got it on the kindle app as it was only 99p that way. I much prefer a 'proper' book but it is handy to have some on the kindle for sleepless night reading and not disturbing my husband. I also have two left of Peter May's Lewis Trilogy to read on there. Just need to suplement this with some 'real' books. ... View more

Lynn, that is good to hear you are doing so well. Makes sense to me to have mx. It is not right we have to fight for treatment, though. I find it a bit strange they wanted to give you an implant but not mx. I am really pleased to hear your tumour markers are down and you are happier. ... View more

I had a phone call today sking me if I still wanted a second opinion. I asked for it four weeks ago and was told it had been requested and to whom I had been referred. Now it would appear that the onc I was referred to no longer works where I was referred to. I wondered if any of you in Scotland could PM me with someone they recommend. I live in the north of Scotland and I am being treated in Raigmore. I was being referred to the Beatson but I do not mind where I go. I am wanting to discuss the fact that my treatment has been less than agressive amongst a few other things. I have Invasive Lobular BC but I suppose I would be clutching at straws in asking if any of you who have that type of cancer, were diagnosed with secondaries at the outset and who then went on to have surgery? Thanks June x ... View more

Claire, a few weeks ago when I had all the growth he said we would probably look at mx now. At that time I was arguing over the failure of the Letrozole and didn't ask too much about mx. I have spoken to my GP about longer survival rates when primary removed (only because she was asking if I still wanted second opinion) and she had not heard this before. I am seeing the BS in three weeks. My onc is now off work on long term sick leave so my main point of contact (along with random locum oncs) is the BS so I will also ask him more questions. I think you are completely correct in choppings bits out we don't need. Can't see the point in keeping them myself. Apart from the ovaries and womb which I no longer have any use for my right breast is now just a funny looking mis-shappen big hard horrible lump. My husband must think I am such a catch! I will look at Susan Sallis. Still not ordered any new books. I think I am onto my last book that I haven't previously read and I always like to have a few in reserve. Take care. June x ... View more

Claire, I was diagnosed with the primary on Sep 28 last year and mx planned. By the time CT scan, MRI and pre op done it was discovered I was so anaemic they don't know how my heart had kept going. I had an internal ultrasound just prior to results from the other scans and they them discovered tumour on right ovary and spread to womb. Mx was cancellef as not well enough and as it was no longer 'curative'. I had had heavy bleeding for a while but thought I was menopausal. Started on Letrozole, Zolodex implant, Zoleda infusion and Adcal tablets. Because the lump in my breast does not show up well tumour markers have been heavily realied on. Recent CT scan showed lump as 26mm and it it actually sbout six centimetres in a big solid round lump. Tumour markers also went from 70 to 280. After having to fight for it I have now stopped the Letrozole and started Capecitibine. I actually found this thread because I googled Breast Cancer with spread to ovary and a post of yours came up. It would appear that we have very similar spread and both have Invasive Lobular. I also had inderminate liver mets reported on one scan but never showed again so they think that is not affected. Spread to bones in spine, pelvis, collar bones and ribs. I used to be surprised that your treatment was so different to mine but recent experience has me thinking my hospital just haven't given me the best care. I have now asked for a second opinion as I want to discuss this. I think when I was first diagnosed the Breast Surgeon did really not expect me to respond so eell to treatment. I am very well other than tired at times. I think because I am so well I have tolerated the first round of Cap chemo really well. I hope you are feeling a bit better now you have spoken to a nurse. So typical that the one you trust is not available when you need her. June ... View more

Hi Claire I have ILC like you with spread to right ovary, womb and extensively to bones. I have CAE, CA125, CA15-3, full blood count and kydney function test every four weeks. I have had no ops. Mx was cancelled after spread to bones discovered. Not sure if that helps you. I think you have done the right thing staying of work and looking after yourself. I hope you get to speak to the nurse soon and she can reassure you. Tylerrose, I agree with Val this thread is the best for us. It is full of so many women who are so informative and supportive. Good luck for Friday. It is good you are getting prompt treatment. It always feels better once treatment started. June ... View more