Breast Cancer Now Forum

So sorry to hear this, Carolina, given your encouraging results at first diagnosis. It shows the sheer unpredictability of this disease. Wishing you all the best for your tests, in the hope that there may be another explanation. Kathy xxx ... View more

Golly, Birgit, your experience mirrors mine very closely. 6 years from end of treatment to recurrence, only 2 years of Tamoxifen because of eye problems, recurrence more aggressive than primary. It just shows that we can't predict or control what will happen, but just do the best we can and pick ourselves up again when sh*t happens. Hope your surgery has gone or will go well, Deni. Kathy ... View more

Fascinating site. I too find the discrepancy between primary and secondary numbers rather odd, Jane. I checked the Radcliffe hospitals in Oxford as that was where my recurrence was treated and their combined diagnosis figure for the 3 hospitals was 410 primary and only 5 secondary which is plain weird. I also notice that not all hospitals can fill in all the sections because of the way they keep their own statistics, so perhaps internal record-keeping can account for some of the oddities. ... View more

To answer Sukes' question about number of nodes first, the answer is that the number canvary immensely between individuals, from as few as 5 or 6 to over 30. When I had my first (Grade 1, stage 1) bc over 9 years ago, I had axillary node clearance and they found 11, all of which were clear. My bc was very hormone dependent, so I was put on tamoxifen after WLE and rads, but came off after 2 years because of a rare complication. I was told my prognosis was excellent and virtually forgot I'd ever had bc until I had a small Grade 2 recurrence under the ANC scar nearly 7 years after first treatment. I've been given another good prognosis, but the background worry never really leaves me now. However I have friends whose original tumours were much more serious than mine and who had positive nodes and they are fine, some of them many years after first diagnosis. Breast cancer is a very unpredicable beast (or beasts) which is what makes it so hard for many of us to deal with. One final thing - I understand that breast cancer doesn't spread primarily through the lymph system but through the circulation. Having positive nodes shows that your cancer has proved it has the ability to spread, but it doesn't just go automatically through the nodes to the rest of the body. Hope this helps... Kathy ... View more

I'm not sure I would dismiss this report quite so quickly as some of you, though I agree that the press reporting has been superficial. Cancer Research UK is one of the major cancer research organisations and aren't given to publishing scare stories. From what I've read, they aren't saying that women shouldn't drink at all, but reminding us that excessive drinking (more than 14 units a week for women) increases the risk of developing bc (currently a life-time risk of at least 1 in 9) and also that the larger glasses of wine which are served in many pubs and clubs actually contain far more than the 125ml which consitutes one unit. The increasing strength of modern wines is also a problem, as the units per week recommendations were devised when wines weren't as strong. Stronger wine in bigger glasses makes it very easy to drink more than is perhaps healthy for us without realising it. Another worry is the effect of binge drinking, since it appears that it is more damaging to drink a largish number of units very close together (say at the weekend) than to spread them out over the week. Some of the main risk factors for developing bc - above all getting older - are things we can't do anything about, Trying to keep our weight at a healthy level, not drinking more than is considered healthy, etc, are more within our control. I'm post-menopausal, have had bc twice in the last 9 years, am considerably overweight and drink perhaps 4 small glasses of wine a week. I can't do anything about my age unfortunately, but I am working hard to lose weight and I will go on having the odd glass of red and enjoying it. That said, I support CRUK for warning women to be sensible about their drinking and think they would have been wrong not to do so. Kathy (about to duck....) ... View more

Hi Cathy, When I had a recurrence in 2005 I was treated at the Churchill and was actually very impressed by the standard of care. My mastectomy was done by a superb surgeon and though I didn't need chemo, the oncologist who did my follow-up appointments was very approachable and extremely thorough. I was sorry to have to leave the care of the Churchill when we moved to mid-Wales last year. Good luck Kathy xxx ... View more

Hi Prettykitty, When I had a recurrence under the lymph node clearance scar, I was offered anotherv WLE, but chose to have a mastectomy. My surgeon went on offering right up to her pre-theatre ward visit an hour before surgery! So yes, you can have more than one WLE in the same breast. Good luck Kathy xxx ... View more

Another member of the class of 2005 here, though in my case it was a recurrence. When I was diagnosed with my first bc (small Grade 1, no nodes) in December 1998, we had only just gone on email and if these forums existed then, I didn't find them. After my second diagnosis in August 2005, it was my husband who found the BCC site and suggested I might like to look at the forums. He didn't know what he was getting me into! The information and support I've received from this site and leter another one have been enormous and invaluable and helped me to cope more than almost anything else.. Two and a half years on I still visit both sites daily, though I now read much more than I post. If I feel I can help either with information, or by sharing my own experience, I try to do so, while still gaining a great deal from the informative and often moving posts of others, many of whom are facing much more difficult situations than my own. In reply to your orginal query, Alise, I don't think there's anything wrong with still needing to visit this site regularly, especially when we don't want to upset or annoy those near to us by talking about something they can only approach from the outside. Having bc is a life-changing experience and sometimes we need to acknowledge this openly and here the forums can help enormously. Kathy xx ... View more

Hi Deni, No, didn't have chemo the second time either, as the tumour was very highly hormone-dependent (ER 8/8 and PR 5/8) and also didn't have a reconstruction. My super breast surgeon doesn't do them and I really haven't wanted to have more surgery afterwards. As far as Arimidex is concerned, I've found it much better than tamoxifen. Some hot flushes to start with, but these are pretty rare and mild nowadays. I've also escaped the bad stiffness and joint pain some people experience, though I can stiffen up a bit if I stay in one position for too long, but it wears off very quickly. My main side-effects have been impaired memory and concentration (lack of oestrogen) and also tiredness, but I've learned to live with these (more easily now that I've retired). Don't worry about askling questions - always glad to help. Good luck Kathy xxx ... View more

Hi Sarcath, Just a guess but could it be that the areas which didn't show any reaction are the ones which are used to getting suntanned, so that the skin is perhaps less sensitive and likely to react? I only had rads to the breast area, which went nicely pink for a while. Kathy ... View more

Hi Lesley and Lillibet, Hope both of you have had good results from your bone scans. I'm now waiting to be referred for a bone scan after going to my GP with two areas of tenderness, one in the ribs above my mastectomy scar and one in my back between my shoulder blades. I had one when I had my recurrence 2 and a half years ago, but can't help worrying again about this one. It never seems to stop, does it? Kathy ... View more

Hi Deni, So sorry to hear about your new diagnosis and wanted to say how familiar your reactions felt to me. I had a small, Grade 1 tumour in late 1998 and after WLE, ANC and rads was put on tamoxifen and given an excellent prognosis. Over 7 years later, in summer 2005 I found a new lump (Grade 2 this time) under my ANC scar and like you chose to have a mastectomy because I really wanted rid of a breast I felt I couldn't trust any longer. I too had to have all the scans before surgery because it was a recurrence, but thankfully they were clear and I'm now on Arimidex. It's so easy to torment yourself by thinking of all the things you could have done differently or better (lose weight, exercise more, don't drink, etc, but it's totally unproductive and just made me feel worse. Since my second op I've tried to eat more healthily and I'm at present trying to shed some of my excess weight, but realise that even if I do all the recommended things, there are still no guarantees with this sneaky and unpredictable disease. Hope you get your surgery date soon Kathy xxx ... View more

For my WLE 9 years ago I was on a general surgical ward and was the only breast patient, but cannot complain about the care which was very good. I was visited by the physio who taught me my arm exercises. When I had a mastectomy 2 years ago after a recurrence I was in a dedicated bc unit in a different hospital where the care was excellent and I was give a different set of exercises 🙂 In both cases I was in the open ward but didn't feel this was a problem. Also in both cases I was seen regularly by one of the surgical team and by my bcn, so I think I was lucky both times with the standard of care. Kathy ... View more

Hi Patricia That's weird. I wrote a reply to your post yesterday, but it looks like I lost it when I posted. I wrote to say that I'm very sorry you're worried, but glad your biopsy came back clear. I don't have personal experience of lumps in my neck, but I do know that they can have innocent causes, such as infection. I think you should be reassured by the careful eye your onc is keeping on you. If he feels there is a need for more tests I'm sure he will ask for them. Why not tell about your worries and ask his opinion when you see him next week? Good luck and keep us posted. Kathy xxx ... View more

Hi Jane So sorry to hear that you're having to go through the maelstrom of emotions attached to tests and waiting again. It's really is an awful strain and I remember how hard I found it when having all the tests linked to my own loco-regional occurrence (under the ANC scar). I'm sure there there are a number of others on the forums who have experienced what you are going through and who will be along to help. Please keep us posted. You will be in my thoughts. Kathy xxx ... View more

So sorry, Jakki This must be such a shock to you. I'm afraid I haven't any personal experience to share with you, but I've followed your posts about your supraclavicular nodes and wanted you to know I'm thinking about you and hoping that the next treatment will be really successful. Kathy xxx ... View more

Hi Chrissie So sorry you've had yet another diagnosis. I can't believe how obstructive your consultant has been. With so many positive nodes chemo was inevitable and it's totally unacceptable that you weren't referred to the onc at once. I'm glad that your chemo has started and wish you every success with it. As far as your question about monitoring is concerned, the answer seems to be that it depends on your hospital's policy. Given that this is your 3rd cancer, I would hope that the monitoring will be thorough, but can't say what form it might take. From reading the forums for the past 18 months, it seems that practice varies hugely from one hospital or NHS trust to another. In my case, I had a recurrence (under the lymph node clearance scar)18 months ago, 7 years after my first diagnosis. I chose to have a mastectomy and am now on Arimidex. My regular 6 monthly follow-up has consisted of a thorough physical examination, including listening to my lungs, and so far one mammogram of my remaining breast, but no scans. I will be moving soon and my subsequect follow-up will be back at the hospital where I was treated for my first cancer. I'll be interested to see whether their procedure will be different now from what I had first time round. Good luck Kathy ... View more

Hi Jenny I'm afraid that the aromatase inhibitors wouldn't necessarily be any better for you. One of their most common side-effects is joint pain and stiffness and they can definitely cause a loss of libido, because of the removal of almost all oestrogen from the body. Tamoxifen doesn't remove oestrogen, it just stops it linking to the hormone receptors in any stray cancer cells and helping them to grow. From my own experience I would recommend a daily teaspoon of cod-liver oil, available in big bottles from Boots. Because of a problem with an inflamed hip I started to take this some years ago, long before I was put onto Arimidex after my recurrence 18 months ago. I have to say that I have had absolutely no problems with joint pain on Arimidex and only a little, very temporary, stiffness if I sit for too long in the same position. I am nearly 61, overweight and don't take enough exercise, yet I can still touch my toes with my legs straight, which I put down entirely to the cod-liver keeping me reasonably supple. My recommendation would be straight cod-liver oil instead of more expensive capsules, of which you'd need to take at least 2 or 3 to get the same amount of oil as one teaspoon. Codliver oil is now treated to lessen the taste and isn't difficult to take. Good luck Kathy ... View more

Hi Taffy I had a recurrence under my axillary node clearance scar and had to have an abdominal ultrasound as part of the tests before I even saw the surgeon. I haven't had a CT scan but I gather different scans show different detail and they may just want to confirm the findings of the CT scan. Try not to worry about the urgent message about the ultrasound. In my hospital there is always a long wait for ultrasound appointments and I don't expect yours is much different. If they get a cancellation they will always want to use it and it may save you a long wait. Good luck and do keep us posted. Kathy xxx ... View more