Breast Cancer Care Forum

Thanks Caroline. A couple of weeks is good to know. Yes, gentle treatment because of mum's age and her desire to focus on quality of life. Thanks for your reply, appreciate it xx ... View more

Lulu was just one in a million. Readily willing to offer her knowledge, always balanced in her views and completely selflessly supporting others. Fly freely Lulu, thank you for the support. Sad that another life has been taken by this vile illness, hug xxxx ... View more

Hi I had my surgery at the end of Nov and went skiing mid February - this was one week after finishing rads. For me it was the very best 'therapy' after 9 months of treatment. Skiing is my passion and I have been doing it for 35+ years, so I am confident on the slopes. However, I started off on the easy slopes, with lots of stops. Slowly regaining my confidence. My family carried my gear and I couldn't get the boots off at the end of the day as my finger joints were still so painful from the chemo! I couldn't get travel insurance as it was so quickly post treatment, but took out insurance without bc covered. You can always go and just ski for a couple of hours every day? (that was my plan, but it turned out, I was fine) Hope this helps. Regards, Nimx ... View more

Hi Cooperk123 I am sorry you're in the waiting room as that's tough isn't it? My lump was not well defined and my GP thought it was nothing until I entered the breast clinic, where they diagnosed me quite quickly. I had no pain, just a thickening on the outer side of my right breast. So I'd say to you is that everyone is different and has different symptoms, a lot of ladies go for a mammogram and things turn out to be fine. You are doing the right thing by getting it checked out and I hope that you will be absolutely fine. I wish you all the best for Tuesday! NIM41 ... View more

Tea and sympathy at (primary) dx has been my experience. After that, during treatment things were very hit and miss. They would not necessarily return phonecalls, so I found that contacting the bc clinic reception and stress the urgency of a call from BCN worked ok. I don't think my BCN's realise that the waiting, waiting and waiting for results is the worst thing. Even if they don't have the result, a 30 second conversation, saying 'I haven't got them but will have them in 2 days' is much better than just ignoring people. My BCN messed up my op date - as I had chemo first and then my op - I think they forgot to put me on the list. Only after my husband threatened to come to the clinic to speak to the consultant did the date get moved forward. Care post op was good. But I dread to think how my BCN team would support secondary ladies. I only have my experience to go by, and it was one that could be improved a lot. I cannot say what the workload of the BCN's is but I suspect they have to make choices given limited resources. ... View more

Hi I was on tamoxifen for 2.5yrs and I must say that the initial side effects that you describe Kimvon pass with time. Give it 3 to 6 months and things will settle - at least they did for me. That sounds like a very long time if you've just started the journey but I am sure you can do it! I bought one of those chillow pillows to help with hot flushes at night, and I love it. I moved on to different meds now so dealing with different se's again and also at the beginning of a 5 year period on these....all the best NIMx ... View more

Thanks Maryland, that's very helpful. I haven't seen my onc yet since swapping to Anastrazole and usually like to ask if I can take certain supplements or whether they interfer with Anastrazole. So this helps until I see him in October. Rachel, that is pants about the hair loss, I hope it steadies and will not be too obvious. NIM ... View more

I so hate this bloody bc. Bernie was diagnosed 2 months before me and she brought bc back into the media in her own powerful way. I liked the fact she came out with her bald look. Very sad to hear she has passed away....rest in piece... xx ... View more

Hi I have switched to Anastrozole after 2.5 yrs on Tamoxifen. It's still early days, 5 weeks in but sofar so good. I do get achy joints and really have to take some time in the morning to get going. Have had some headaches too, but unsure if this is a side effect or an ordinary headache after a busy day at work doing lots of reading... It's difficult to know. Hot flushes are more intense after a period where I thought they were not too bad (while on Tam). But hey, we're all different and I had an oophorectomy 2 years ago, so was surprised for the hot flushes to return with a vengeance. The fuzzy brain that I felt whilst on Tamoxifen seems to disappear. Dexa scan normal. Am active, going to the gym regularly and exercise seems to easy stiffness of the joints. Maryland, interested to read you're taking joint care and calcium tablets. What dose are you taking and what brand? NIMx ... View more

Hi girls I am 2.5 years post treatment and I use an electric razor or hair removal cream. I had full auxilliary clearance and I want to avoid cutting myself as the armpit is mostly numb. Throughout treatment and more so post treatment I have exercised lots - I believe it has helped with the ongoing tiredness that has been a problem for some after chemotherapy. I am fit, am no more tired at times than before bc and research indicates that exercise helps recovery, helps to overcome se's from treatment and may also help keeping you well going forward. No guarantees, but hey, it's my motivation. Just off to the gym now. x ... View more

I had a picc line and it was the best decision ever. My chemo unit recommended it as it was easier for them and much, much easier for me. It was easy to put in, no pain, very slight discomfort for first 24 hrs. You just know that something has gone into your body, if that makes sense. I had it flushed weekly at my chemo unit, wrapped my arm in clingfilm before showering and did not have a bath for a bit. I have no problems with my veins now, about 2.5 yrs post chemo. It's a lot to take in isn't it, this whole bc thing and the unknown can make you feel apprehensive. Wish you all the best with your chemo journey. Nim ... View more

Hi Mandy I was 41 upon dx, with large tumor, neo adjuvant chemo, WLE and node clearance, radio therapy and tamoxifen. I was dx in June 2010 and like you have a strong family history (mum bc, maternal aunt bc and ov). Above and the fact that my cancer was strongly ER pos were all deciding factors to have an oophorectomy (bilateral salpingo oophorectory, basically the tubes and ovaries). My onc only wanted to consider the op once I had finished treatment and 2 months post treatment we got the ball rolling and in July 2011 I had the procedure done. It was a tough decision, as I felt it was my decision rather than part of my treatment. And I wondered what am I doing to myself....? But, I haven't looked back and am to this day happy with the decision to go ahead. The op was done via keyhole surgery and involved an overnight stay, and within 2 weeks I was back at the gym. It really was a easy compared to the other bc stuff. Another deciding factor for me was the fact that I had started to feel my hormones kick back in post treatment. It drove me insane to think that I was producing oestrogen again and thus feeding any stray cells. The hot flushes kicked in pretty quickly post op, but they seem to have calmed down a bit off late. I stayed on tamoxifen and will now after 2.5 yrs on it move to an AI, anastrazole. If you have any questions, please feel free to pm me. NIM ... View more

Hi Mazza I started to lose my hair 8-9 days post first FEC and I had a shortish bob. On day 10 my oh got the clippers out and cut it back to 0.5 cm as I found the clumps of hair falling out annoying and upsetting. Once the hair had come off, I felt fine. It was the anticipation of losing I found really unsettling. Losing the hair didn't hurt in my case. I had a wig, never wore it. Just had hats and scarves and this worked fine for me. Whether you should shave before chemo 1 or not is up to you (and it's so difficult making these decisions!). But why not wait until you're in the chemo chair, see how/if you get on with the cold cap and take it from there? Also there you can chat to other ladies, I found that quite comforting. Wishing all the best! NIM41 ... View more

Hi Sunshine Really some very good tips on this thread already. I had my WLE and clearance in November 2010 and have been absolutely fine. I am careful not too carry heavy shopping etc on my right. But I work in the garden lots - always protecting my arm by wearing a fleece. I go to the gym and do use my arm with very light weights, stepping etc. Anything you do, build it up slowly and gradually. We went to India in January and I always bring light long sleeved clothing to protect agains mosquito bites and use factor 50 suntan lotion. Something to bear in mind is that while the risk is lifelong, I did learn at one of the BCC info afternoons that 90% of lymphoedema occurs within 3 years after surgery. Do your exercises and I hope that you'll be fine with it. Fingers crossed for you. Nim41 ... View more

Hi Milo So sorry to hear your discomfort with letrozole. It must be a difficult balance for you, the benefit of being stable but the pains you have to put up with. Wishing you well and thank you for sharing. Thanks Daisygirl. NIM41 ... View more

Hello Thanks for sharing your experience. Interesting to read you did a straight swap, Daisygirl, from one day to the next changing over. Are you on a generic anastrazole brand? I don't know about wight gain and AI's, but I do know that it's tough to lose weight on Tamoxifen or even stay the same. I have struggled with that, weight has crept up about 4 pounds over 2.5 years despite a lot of exercise. Any more ladies out there who are able to share? Thanks Nim41 ... View more

Hi Caz Thanks for your note and I wish you all the best with your bc journey. My mum too had bc over thirty years ago, she's still around. So I get what you're saying when you compare her and your health. Perhaps you'll be ok on Tamoxifen. I'm not saying it's been plain sailing when dealing with the se's etc, but they have been manageable for me and I hope you'll be ok too. Nikki x ... View more

Hi Cressida Just sent you a message. N x ... View more