Breast Cancer Now Forum

If you're really tired and it is affecting your life, I think you should go back to see your oncologist - either to get checked out or to revisit your medication (you can switch to Tamoxifen even if you are post-menopausal). I get tired, and only sometimes exhausted but the things I try when I do get tired are 1. Drink a glass of water (personally I hate drinking cold water, but it does seem to help) 2. Go for a brisk walk - even 15 minutes helps, so you should be able to do that even if you work 3. Give in and set the alarm for just 20 minutes - NO MORE. This can't be done if you're at work I know, but if you can it is great because it doesn't disturb your night time sleep. I found it difficult to do as a) I couldn't get to sleep and b) if I did, I couldn't get up. So just don't worry - close the curtains, turn the light off and take a hot water bottle if that makes you feel cosy. The important thing is to get properly into bed as if you were really going to sleep. If you don't sleep it doesn't matter, but as SOON as the alarm goes off force yourself to get up. You wont feel like it, but 10 mins later, you'll feel much better. 4. Cut down on tea and coffee, switch to herbal teas or anything without a stimulant (if you can't bear herbal teas try decaffeinated tea of coffee). Hope these thoughts help Annie ... View more

I just wanted to say that the 'what if it comes back' is always going to be there - BUT, it gets less and less of a jolt each time you think about it, and happens less often. In a way it is a bit of a protective mechanism as it means you stay vigilant. I had an mx for my DCIS and a reconstruction but unfortunately I still got cancer (in the reconstruction). However, the vigilance from the worry meant that I was able to insist that I was taken seriously and I went into chemo, rads, herceptin and more ops. If I hadn't been so concerned I may have accepted the statement from my doctor 'you don't have any breast tissue, so you can't get breast cancer'. So the worry helps us to stay safe and it lessens over time. The good news is that IF you get invasive breast cancer after DCIS, it will still be very treatable and the statistics of cancer developing after physical removal of the damaged DCIS tissue are very low. I was just very unlucky - but I'm alive and cancer free and I'm now able to have some perspective which can only come with time. So sorry for those in the early days - it is such a difficult time and there isn't anything but time (and counselling if/when you're ready) to help. Good luck to all of you - just trust in yourselves. Annie ... View more

Hi Sharon, Did your oncologist or surgeon talk to you about taking Tamoxifen (if you are pre or post menopausal) or Arimidex (if you are post-menopausal) - as a 'belt and braces' approach? If you are oestrogen positive, I understand this to mean that the oestrogen could have contributed to your DCIS. Therefore blocking oestrogen production might be a good idea for the future. Obviously, I don't know what your report says, but I understand that some hospitals do this and some don't (and it all depends on your pathology report). There is no rush to sort this out, as these drugs are long-term (up to 5 years), so if he did think you'd benefit from them it isn't something that you'd need to hurry to start taking, but it might be worth asking your Macmillan Nurse what the policy is at your hospital. I know people who have been given the drugs and people who haven't - it is all down to the pathology. I'm only flagging this as your consultant seems to be a bit dithery. Annie ... View more

Thank you both. You're right about a minefield! The trouble is that some 'new' foods on the market are not even defined properly as to what they are. You're also right about being healthy and happy, but I would rather eat a simple and safe diet - and I'm lucky that food doesn't bother me, nor the lack of alcohol, coffee or tea. So, I'm VERY fortunate that I can avoid stuff. I avoid soya and all the things you suggest Rev Cat (and good to have a reminder - so thank you), but I am bothered that some foods seem to cause an instant 'hot flush' and it makes me wonder if this is due to a surge of oestrogen in the foods....but as you say you can confuse yourself! Thanks for the advice Annie ... View more

Catzoo, 'what would happen if I didn't go for treatment' is a good and valid question, and maybe this is something you should ask your oncologist. I asked mine the same question and, once they have all the results and understand exactly what you have got, then they are able to give you a sensible and honest answer. If you really understand your choices you will feel that you made the decision, rather than being on this confusing conveyor belt. So, I'd say, don't let that question fester - write it down with all the other questions you want to ask so that you're prepared for when you next see one of your specialists. I felt a bit ridiculous asking the question, but I wasn't treated as if it was ridiculous and talking it through really helped me feel in control. The medical profession jump onto getting us treated as they care about us, but sometimes it is so difficult to absorb what is happening, but you must ask if that helps you. Be kind to yourself Annie ... View more

Some info I have read, suggests that Tamoxifen sometimes causes types of endometriosis (symptoms of which can be pain and bleeding). As Tracy says, it depends whether you are pre- or post- menopausal as to your risks. Tamoxifen gave me a blood clot in my jugular vein after 3 months on it and it was quite scary as it was undiagnosed for another 2 months until I was hospitalized. However, I was taken Tamoxifen immediately, once they understood what my problem was, and was off it for 3 weeks until a suitable alternative was found. I was reassured that being off it for this time, was unlikely to make a difference to my risk as it is a long-term drug, so I'm sure your doctor did the right thing. Hope you can be reassured. There are plenty of alternatives to Tamoxifen, so I hope you'll be more comfortable soon and your symptoms will ease. Annie ... View more

I too was er/pr positive, had Mirena coils for 20 years and had last one removed when I was diagnosed at 51. No idea whether I was post-menopausal or not as had no periods in those 20 years (bliss!). So, I was put on Tamoxifen (as that works on both pre and post menopause). 5 months later I developed a blood clot from Tamoxifen in my jugular vein, so was taken off Tamoxifen. I had three blood tests over a few months and my onc said that my FSH levels were so 'convincingly' in the menopausal zone that she's put me on Arimidex (Anastrozole) - which doesn't cause blood clots. I'm on this for 5 years. Cheshire Cat, Is it not feasible for you to go on Tamoxifen again? It will do the same as Anastrozole, but will cover you in case you haven't gone through menopause. I only changed due to the blot clot. Annie ... View more

Yes, I have put on a stone in 6 months. I'm sure it's Arimidex as I was on Tamoxifen for a year and developed a blood clot, which was misdiagnosed as lymphoedema (spent 10 days in hospital over Chrismas once it was properly diagnosed) and then was switched to Arimidex. I have been 9 & half stone since I was at Uni and I am now 54. I gained 3 stone in weight for each of my kids and lost it slowly over a year each time - the last time was 20 years ago so I know how to lose it effectively. I have drastically cut my food intake and I don't drink - so I really am feeling down about it and hope that I stabilise soon. I have been thinking about asking to try a different drug. Annie ... View more

I've come to think that we're all very British about this, and deny ourselves encouragement. We could just decide that someone saying we are brave is well-meant praise and not think more deeply about it. As the months and treatment have gone on, I now think 'Yes, I am brave'. Brave simply means 'able to endure danger or pain'. We all do this, we may cry, get angry/depressed, whatever...but we endure it and get on with it. So, if anyone says that to me now, I just say 'thank you'. Getting to the end of the journey to the best of our ability is what it is all about. So, take it as praise and let it make you feel encouraged. Annie ... View more

Hope you'll be clearer about what it is by now. If there is the slightest doubt, I expect you will have to have some tests, so you may not have a final answer yet. If it is a recurrence then the best thing my onc. said to me when I got mine (in recon. breast) was 'it is very treatable'. And it was. Like everyone else, I hope it isn't a recurrence. Please let us know. Annie ... View more

I was on tamoxifen, but was switched to anastrozole due to getting a blood clot in my jugular, across chest and down my bad arm, so I guess there are side effects whatever you do. The sweating at night is bad enough, but I couldn't get dressed for work yesterday, so I was late. I'd showered and then came out in a sweat and couldn't bear to put my work clothes on until it passed. A 20 minute delay meant I missed the train. It does seem to get worse if I've drunk too much tea/coffee. Annie ... View more

Angela, I had the same as you with an LD flap too, and mine went wrong too. I had the nipple removed and the skin taken out, then an LD flap pulled under my arm and put into the 'saved' skin, and, because there wasn't enough fat, I had an implant in there too. Lots of drainage problems and a seroma in my back that has still not gone, but it is hardly visible now (since Nov 2009), and the scar in my back stuck to me, so I don't have much movement in my back. (that's not the 'wrong bit'!). 3 months (Feb/March) later, I found a pea-sized lump in the breast. Went to doctor and he said it was nothing. Long-story-short: another 3 months later, I presented myself to the breast clinic with no appointment; cheated the system and was diagnosed with a 2x5 cm cancer in the recon. So, usual treatment: 6 rounds of Chemo, Herceptin (18 sessions over a year) 25 x rads and a lumpectomy in the recon. (looks lovely! not), hardened implant. Arm was painful and swollen, so I wore a lymphodema sleeve for 4 months until I couldn't use my arm (38cms around it vs 26 in normal arm) - but was then diagnosed with blood clot in jugular/arm from Tamoxifen blah, blah, blah. 10 days in hospital over Christmas, now on Warfarin to keep the blood thin. Having a rest before I go back to see if I now need the implant removed, but have lost so much money (and had to downsize and move house in the middle of all this - from a lovely family home, to a filthy house that had been let to some exploited foreign workers), that I haven't got time as I have to work (didn't get sick pay). So, that's my story, not sure whether this is a 'went wrong', or whether it is part of the awful mess of this disease: it all started with a simple mx and reconstruction for DCIS - but 2 and an half years later, the journey is nearly over I hope. I know what you mean about being scared into making a decision. But once it's done all we can do is live through it and get to the end. My philosophy now is 'it will be all right in the end, and if it isn't all right, it isn't the end) Annie ... View more

Well, I'm not an expert, but think it is about reducing the risk of getting cancer I would be asking: 1. If it is recurrent, would radiotherapy stop it coming back again? (or am I just delaying the day I might need an mx anyway?) 2. Is it recurrent, or actually a new DCIS is a slightly different place from the last one (so, therefore, removing this bit, may mean it would occur somewhere else in the breast?) 3. If I had a lumpectomy & rads, how/when am I monitored to check that it has worked and there is no residual DCIS that could become a cancer? I think I'd then want to know 3. If I had an mx, would that mean that I have no chance of getting cancer in that area? And would I have radiotherapy after the mx too? (if not, is this because in this case, there is no risk left?) Sorry, not an answer, but hope it helps Annie ... View more

If you're thinking about an immediate reconstruction, just ask your team about the risk of invasive cancer in the reconstructed breast. Some surgeons/oncologists suggest you have the mx, then wait 6 months just to check that all the suspect DCIS really has been removed. I think the figures are really, really low, but I didn't realise there was any risk and felt uncomfortable that I made the decision without knowing. I'd be interested in the response. Annie ... View more

Have you tried the Mary Portas 'armery' collection. Like tights for the arms? I bought a black lacy pair. You can order online via her site at House of Fraser. They're made by Charnos. Annie ... View more

I had my mastectomy and LD flap reconstruction and was also back at work after 6 weeks. Sometimes it isn't an either/or for implants. I needed an implant as well as LD flap as I didn't have enough body fat to make a breast the right size, so I have a small implant too. (I am a 36D)..I could have had a small new breast then had the good one reduced in size to match, but chose not to do that. What I will say is that I was shocked that I couldn't use my arm at all after the op; couldn't even clear my teeth - but it is surprising how quickly everything starts working again. Good luck Annie ... View more

Interesting reading this. My doctor just prescribes the generic and the pharmacy gives me whatever they have in stock. Sometimes it has been Arimidex and sometimes something else (Arimidex this month). Reading the packet, it seems that there is no difference in the ingredients and there isn't any coating on the pills, so does anyone have a theory as to why there may be s/es with one type and not another? is it the quality of the ingredients? Annie ... View more

In your 'good' breast. I really know what you mean - same here. I've always liked my right one better than the left one. Better shape, feels better etc...but now I have a dodgy breast in place of it. Not only that, but the cancer came back in the recon, so I now have a strangely scarred and even dodgier breast. I tried to explain to OH that I was mourning my old self (overweight now too), and he said 'well, I have to mourn the loss of your body too'!!! Probably true, but there are times when a small lie might help. Anyone else have OHs that have never said 'you'll always be beautiful to me' and nice things like that? If so, what do you do with them? A ... View more

Glad I found this thread as some of you might understand and say 'ahhh'. I had mx (end 2009), then more cancer, then chemo, another op, rads (mid 2010/11), herceptin and arimidex now. Then a blood clot from the drugs (in hosp over Christmas). All do-able. Am over that. THEN I had an eye test last week: Got cataracts and will need an op next year. (Good news though as just read about a new really quick op that is non-invasive, so that'll be good). So, that's do-able too. No problem But NOW (having gone to GP for lower back pain) I need an op for a prolapse, caused by damage sustained 20 years ago from child number 1. 'It will only get worse if you leave it' said the consultant helpfully. I am actually falling apart. What happened? In 2009 I was running 3 times a week, healthy, eating well. I think the menopause had thrown me off the 'normal life' cliff into some horror movie that involves enforced sitting in hospitals having treatments. Does anyone else feel that it is one thing after another? Annie ... View more