Breast Cancer Care Forum

Thank you Jan for your brilliant post. Its given me a real boost to read it. I so agree your advice to JacT - do not google! I've used the nurses on here when I've wanted independent expert advice and they have been really helpful. Love to you both Mo x ... View more

Hi JacT, So sorry you have all this to deal with, especially with the virus to add to everything. Just adding a bit from my experience in case it helps. I had left mastectomy in 2014 and during the operation they thought the sentinel nodes were clear, but afterwards found isolated tumour cells in them - these are tiny cells so small they are regarded as safe to ignore and no other treatment was thought necessary. Three years later I had a lump removed from he right side, nodes clear, followed by rads. Then last year I found a spread to my lymph nodes back on the left side. Surgery was seen as the main treatment, they had me in quickly and did a full clearance - three nodes had cancer.  I followed up with chemo just in case it had spread any further and got through that by last August. Since then I've had a CT scan which showed clear and have every hope to stay that way. I'm not sure exactly what you were told about "having 5 years", but when they talk about 5 year survival rates it usually means "how many are still alive 5 years later", not that we only have 5 years to live. You are in a horrible place at the moment with all the shock and worry so new, but you can get through it, lots of us have and intend to be here for a very long time! Very best wishes to you. Love Mo xx  ... View more

Hi Simi7, I've had this too - twice had ultrasound and it was an internal stitch and/or scar tissue. The doc doing the scan said there was a neat scar on the outside, but a lot more inside. So it is absolutely possible that is all yours is, but you are right to get it checked. Try not to worry (so hard I know!!)  ... View more

I was fortunate that they knew I wasn't going to need radiotherapy after my mastectomy and implant, so I didn't have that concern. I think your team will know what's best, depending on what treatment is planned for you. xx  ... View more

Hello, lots of good advice here, and just to add from my experience - I had one sided mastectomy with immediate implant recon 5 years ago. Like you I did not have much spare flesh and I did not want longer surgery or extra scars. I've been very happy with mine. I believe it works best for smaller sizes - I'm a C cup and my surgeon did say said I was about at the limit for doing an implant - I think bigger than that it can feel too heavy. She has also told me there is no fixed rule about them needing to be routinely replaced, many go for years and years and may never need replacing. Very best wishes for your op and treatment, its all such a shock but it does get easier with time. Love Mo x ... View more

Really sorry to hear about the side effects you and some others have had. We are all different and I thought I'd add a positive report. I'm having zolendronic acid as infusion every 6 months, to reduce the risk of recurrence. I had the first doses last year with my chemo and I've just had the first solo one on Tuesday.  I drove myself to and fro and the infusion only took 15 minutes. So far I'm feeling fine. Just a runny nose and also a bit tired (although even that may be more to do with our elderly dog waking us up needing to go out during the night!) Good luck to everyone xx ... View more

So sorry you are going through this Pixie. I had a mastectomy 5 years ago and like you I was very upset at having to lose a breast. It was a much loved part of me! The cancer was thought to be early stage, so needing a mastectomy was a shock, but the cancer was scattered in several places and surgeon said mx was the only thing they could recommend. Since then I've had a lump on the other side, which was actually more aggressive than the first one, but could be treated with lumpectomy and radiotherapy. So, I believe that they don't opt for mastectomy unless its really necessary and, for me, losing my breast was horrible but I kept telling myself it had to be done in order to get rid of the cancer. I'm glad I still have one left and I was able to have an implant recon which helped. All best wishes for your op, take care Love Mo xx ... View more

Sorry you find yourself in this position, yes its a big shock. I had mastectomy 5 years ago and was offered immediate recon which I wanted to go for as I would have found it more upsetting to be flat. Mine was a skin sparing mastectomy. The options are baffling, but sometimes decided by things out of our hands, so you will get advice about the most suitable options from your surgeon I'm sure. I did not have enough spare flesh for the tummy diep types (but could not have faced that amount of surgery anyway) so my choices were an implant or the shoulder flap, which would have still needed a small implant to balance up to the right size. I decided to go for the least amount of surgery and not to have scars or possible weakness anywhere else, so I have an implant type. It took a few months to get used to and does not move like a real breast, but feels and looks ok, especially since adding a nipple recon and then a tattoo done by my BCN. You will probably find more on recon on here if you look at the Going through Treatment, Surgery threads. Good luck whatever you decide xx ... View more

Hello Marial, just seen your post and (if you are still seeing replies!)  like to say a huge "thank you" for it. Its really kind of you to do this. My history is quite similar to yours, I've just finished treatment from my latest cancer and it is so encouraging to hear you are still well after so long. Long may it continue for all us "Ned"s! Love Mo x  ... View more

Hi Caroline, So sorry you are struggling with this. Of course it has to be your decision but I'll add my experience and hope it helps. I was in the same position - advised to have chemo to reduce the risk of cancer coming back, without knowing for sure if it was necessary. In the last few years I've had a primary on each side, both thought to be nodes clear and chemo either not offered or not essential, so I did not have it. This year I had a recurrence in one armpit - so clearly some cells had lurked there undetected. I had full node clearance and there was still every chance that nothing had spread further, but chemo was recommended and I finished in July. There seems to be no way to know for sure if BC cells are lurking and I share your frustration with that. But they might be there, and now I've finished chemo I feel the chances of that are much much smaller. My oncologist said some cancer will never return, some will return whatever we do, and some would have come back but are killed off by chemo. I decided to give myself the chance to take out that third group. He also said its like every chemo session hits all your cells on the head, the healthy ones get up quickly, while any cancer cells try to get up but each time they are hit they get weaker until by the end they are done for. So I've gone through the chemo, I'll never know if it was needed or has worked, but I find it good to know I have done all I can to protect myself. Chemo is tough, but we recover, and I'm already feeling loads better. Do keep talking to your nurse and team, they may be able to moderate doses etc if it helps you keep going. Good luck with whatever you decide. Mo xx ... View more

Hi Wonky, thought I'd contribute a bit of good news - not sure if this counts as a light, but feels like it to me. After 2 primaries and a regional recurrence I finished chemo this summer. Since the chemo I've had a mild cough and was worried it had gone to my lungs. This morning I had the result of my CT scan and its all ok, lungs clear and nothing suspicious anywhere. Such relief! Now I'm just going to be as positive as I can be and not get weighed down by fear any more. If I feel the worries coming on, I'll think of your lights shining bright. Well done you. Love Mo   xx ... View more

Hi,  No need to assume they fade. I had mine done by an NHS BCN nearly 2 years ago. It is excellent and has not faded to any degree, if it does I can have a "top up".   ... View more

Hi Carolyn, I was an April 19 starter, also fec t like you. I didn't cold cap, I am prone to migraine and thought it might bring one on. I have nice wig for occasional use but hair growing back now. I found chemo scary too, but we get through it. I did get sick with the first one, but just take all the anti sickness pills you need, the nurses were lovely and I was well cared for. We are all different for side effects. You'll soon be counting off the days to the finish, rather than to the start, and that's a good feeling. Good luck Mo x    ... View more

Hi Coconutbean, just echoing with Kathy, I had rads last year and my oncologist said not to use any moisturiser just BEFORE treatment -  he said skin should be be dry and free of all creams etc when you go in. I used to wash and dry my booby before setting off to be sure. I had my rads in the afternoon and I also found it helped to let the air get to it as much as possible for the first couple of hours after (not easy I agree while travelling home in public!) and then moisturise like mad in the evening and first thing in the morning. Hope you find some relief soon, do talk to the nurses for some help, and good luck xx     ... View more

Hi, just adding my bit as I've tried both! I started tamoxifen in August after finishing chemo. I did a few weeks of last thing at night, then switched to first thing in the morning as I find it easier to remember. I have never been told about taking it with food. I'm lucky - have had no particular side effects (at least no more than I can already put down to age, overall treatment etc!) and have noticed no difference to my sleep. When I was on Anastrozole for a previous cancer I did find brands made a difference, my GP pharmacist agrees this happens and says its probably due to manufacturers using different coatings. Good luck with your treatment xx   ... View more

Hi Azura, yes, I think it depends on what chemo you are having. I was FEC T like Annie and my nails had ridges, funny colour and bits flaking off. They are growing out ok now. The chemo nurses recommended dark nail polish to protect from sunlight. I actually don't like wearing it, so I wore gloves a lot! I got some brush on "Strength and Growth" from Boots No 7 and the Macmillan booklet called Feel More Like You gives tips and says water based polishes are less harsh and to avoid remover with acetone or other harsh chemicals. Good luck with your treatment, I got through it and we are all different, so your nails may be fine. Mo xx   ... View more

Hi Polly, I had one side mx with immediate implant recon in 2014. I'm not sure exactly what surgery you had, but it was explained to me that mine involved having the muscle lifted from the chest wall so the implant can be slipped underneath and as well as taking many months to recover from this stretching I guess it means a muscle that started life tucked away under a nice warm breast is now on the outside and feeling the cold? I recognise your description of "clamping", like a spasm, but I'm lucky that mine is no longer painful. I find keeping it warm with scarves etc makes a big difference, also wearing a bra with good support so the implant does not pull, and doing Pink Ribbon pilates. You seem to be already doing all you can like this and I'm sorry it is so painful for you. Sorry not to be much help, but I did not want to ignore your post. I hope it gets better for you over time. Mo x ... View more