Breast Cancer Now Forum

Dear rivemile Just wondered how you got on. I have just received my provisional programme and I must admit it is a bit daunting! Pat ... View more

The phone number I have is (edited by moderator) I think his secretary only works part-time and in the mornings. If you stil can't get through I have his secretary's email if you want to PM me. Good luck, let me know how you get on. Pat ... View more

Well I had my appointment with Dr (edited by moderator) last Wednesday. He is quite a character, asked me loads of questions and bombarded me with his knowledge. He did some live blood tests, explaining what he could see (my red blood cells were sticking together, my white cells were inactive and my body was acid...). He sent me away with a whole load of tests to be done - they come to nearly £800 pounds - then when he gets the results he will come up with a personal programme. In the meantime he told me to avoid sugar (gloucose is attracted to tumours which is why you are injected with gloucose when you have a PET scan) and also dairy. I did at least feel that I was being treated as an individual whereas to a certain extent I feel that on the NHS I am just being given generic standard treatment and told that it won't actually help me in the long term. Will keep you all posted as things progress. Pat ... View more

I am going to see Dr (edited by moderator) on Wednesday. The first consultation fee is £380 which I understand includes the costs of tests! Will report back - watch this space ... View more

Hi Hannah I was also diagnosed last year with secondaries to lymph and have been undergoing treatment now for about a year. Like you I had a high level of lymph node involvement so always knew a re-occurance was likely but still can't beleive it sometimes. I'm not sure about hot tips but would certainly be happy to let you know about my experience this year if it would help. Rather a long story - Just moved house and about to start a new job when noticed neck was looking swollen. Biopsy confirmed secondaries to lymph nodes throughout my body and some take up in bones. I started chemotherapy in September until January (taxotere). This seemed to work wonderfully well at first although by January I was feeling that perhaps the lump was coming back. My oncologist wanted to try hormone treatment (letrozole) and I was on this until Easter but it was not holding the tumours and I was getting some angry raised lumps around my neck and some skin spread. Scans at Easter revealed significant spread so back to chemotherapy, this time oral Vinoralbline but again it did not seem to be working. Getting desparate by then and oncologist referred me to the Marsden. Had a couple of weeks with no treatment while waiting for appointment and things got quite bad. However after my visit to the Marsden I started a combination treatment of IV Vinoralbline and oral capecitamine and this has been working well for 5 cycles now. The plan is that I stay on this treament for 8 cyles if I can tolerate it and it continues to be effective - then ????????? Am feeling very well at the moment, trying to take a holistic view and taking loads of vitamins, continuing MLD massage (this has been brilliant), yoga and swimming twice weekly when possible and using relaxtion/visualtion CD's to help with positive thinking (this is a bit of a problem for me) and also I have a wonderful lady who comes to my house to give "healing". Thats my hot tips for what they are worth - pm me if you want me to give you any more details. Best wishes to you and hope your treament goes well. Pat ... View more

Hi ShelleyAnne Yes I did have a biopsy done on my neck, and no he won't consider restarting the herceptin, although he would be prepared to do another biopsy if I insisted....... Pat ... View more

Very interested in this post ShellyAnne as I am ER+PR-and HER2- in my lobular carcinoma. I originally had two primary tumours and one was ductal and HER2+ but this was later found to be not the one that had metasised and my Herceptin was stopped. I found that as soon as the Herceptin treatment stopped my tumours started to grow again although my oncologist insists that it must be down to the steroids or co-incidence. Was your original tumour biopsied and found to be HER2-? Pat ... View more

Thanks everyone, this was really helpful. I am feeling very fed up at the moment as as well as no evidence of improvement I am also finding that I have had really bad stomach cramps, sickness and diarrhoea since last Friday, which may or may no be related to the chemo and/or the desease which is also in the outer lining of the bowel. Dawn/Jane, did the lumps return just as bad after the chemo? Could you not try another course (like Jane)? Carol - wow a year on this chemo - I hope I have the same, it was reassuring to hear that it took a while to take effect with you too. Now I am hoping that this time it may be that it starts slower and holds it back longer. Patx ... View more

Hi everyone, thank you so much for your helpful comments. I had lobular breast cancer with loads of lymph node involvement in right breast (Her2 neg but PR+). I also had ductal in left breast (Her2+) but it is the Her2 neg cancer that has metasised to the lymph system and elsewehere. I had a course of docetaxol which finished at the beinning of this year but the cancer had already started to grow again and Femara couldn't hold it so have started a course of Vinerabline. Haven't seen much effect yet but am hoping it is still a bit soon. Difficult really because last time the docetaxol seemed to work straight away although it didn't continue. ShellyAnne, what symptons did you have with your kidneys? I would be grateful if you could PM me any links for information as I have problems getting around the BCmets website or out finding much generally about our kind of less than usual take-up. ... View more

Hi everyone Can I join in this club? I too am struggling to fine information on this. As well as extensive desease in my neck and brachial plexus and small volume desease in the chest I have significant peritoneal desease. The scan reports "In the abdomen, there is small volume ascites around the liver and in the pelvis associated with significant thickening of the small bowel mesentery and the omentum. Although are no definately enlarged lymph nodes,the paraaortic area is abnormal with stranding and thickening suggesive of sheets of tumour". I am terrified, but onc is laid back as usual. Can anyone help with what this all means? Thanks Pat ... View more

Hello Trixie So sorry to hear of your re-occurance. I am also from Kent - Chatham, recently moved here so have little support apart from family. I have mets in lymph nodes and skin. I finished docetaxol in Jan and went on to Femara but they didn't hold the tumours and I am now on Vinorebline oral chem which I started at Maidstone hospital last week. I know just what you mean about being in total shock, I still can't beleive it myself. This is such a hard place, but I have had lots of support from the ladies on this site and I am sure you will too. I was originally diagnosed in Nov 2003, but I was always a high risk case for re-occurance as I had lots of lymph node involvement. But it doesn't make it any easier... Where are you being treated? All good wishes Pat ... View more

My oncologist said exactly the same thing about my spread to lymph nodes in neck - that he had not heard of anyone dying from cancer in the lymph nodes. On the other hand though he has always treated my condition as terminal, with the emphasis on holding on to quality of life for as long as possible. His concerns however mostly seem to be about spread to major organs and each scan report discussion starts with "well the good news is still no spread to major organs", although I know that he expects this to happen. He also wrote to my GP and indicated a 2 year life expectancy. I am irritated that he seems to be unable to suggest much to help with the discomfort of lymphatic obstruction and swelling and up to recently didn't even seem concerned about the increased size of the lump in my neck or the red shiny lumps appearing around my collar area (Bex1 is this what you mean by half collar of skin disease?)The lymph node in my stomach which is affected is always brushed off as "small" - but it still worries me. I have no idea what this means or what it may lead to. I get so fed up with the assumption that we are not able to understand/don't want to know about our condition, and I suspect that I am not the only one who then goes off to desperately scan the internet for some kind of information and subsequently end up scaring myself half to death. Because he always seems so laid back I have put off seeing him for as long as possible. Also I don’t want chemotherapy unless absolutely necessary but I suspect that this may now be the case. I have an appointment on Tuesday – anyone have any ideas what questions to ask. My husband can’t come with me this time so I really need to psyche myself up to deal with whatever.... WE DESPERATELY NEED THIS EXTRA INFORMATION ABOUT REOCCURANCE IN DISTANT LYMPH NODES AVAILABLE TO US IN A SENSIBLE AND EASY TO UNDERSTAND FORMAT – BCC - IS ANYONE LISTENING? Rant over. Pat ... View more

Hello Jane I suppose I have been dreading seeing this post but realise that is is the right decision for you, and sincerely hope you have much more quality time now that you are releasing yourself from the relentless side effects of chemotherapy. Our situations are a little similar, as much as anyones cancer is similar to anyone elses, and like so many people on this site I value your posts tremendously. Have just written to you on another post before I saw this..... PatX ... View more

Yes - lets. Through the forum or by PM? I felt quite encouraged by the MLD last week and am due to go again twice this week. BUPA will pay for me for 6 mths (no idea why 6 mths) so have decided nothing to lose. My physio has asked for a letter from my oncologist to confirm that it is OK to do the massage as she has not done this on someone with active cancer before, and I know that there are concerns, but no evidence, that massage moves the cancer around more.What are your thoughts on this? Just something else for us to worry about I suppose, but I know that the lymphoedema won't go away by itself and will probably get worse. It's difficult to tell at the moment what is tumour and what is lymphoedema in some places. I know this really built up when I was ill after new year and can't help but feel that the lymph system got clogged up then trying to fight the infection and was not able to drain away afterwards. Finding it difficult to turn my neck fully or reach behind me on one side but not taking painkillers at the moment as it eases when I rest my arm. I also saw someone at the hospice who claimed to do some MLD on me but it was nothing like the massage I had at the hospice last week - so might be worth you trying a private specialist. Best wishes Jane Pat ... View more

Huge thanks to everyone for your support. Jane - I think you are probably right about taking a second opinion -and would be grateful if you could advise me what do I need to do to organise this. I feel a bit awkward about asking my onc as I am sure he already thinks that I am paranoid. I remember vaguely one of your posts were you recommended someone from the Marsden, could you send me his name? By the way, I am with BUPA if this makes any difference. Pat ... View more