Breast Cancer Care Forum

Hi Astra,   Try not to assume the worst is going to happen. Many women have no side effects to radiotherapy. I was hugely reassured once I spoke to my consultant in charge of radiotherapy. It helped it was a lady. Ask any questions you have to help alleviate the fear and stress.   We have to accept that we are never going to look exactly the same as before our ops but we are lucky we only needed lumpectomies. No one but you will see any difference in the size of your boobs as in clothes you won't be able to tell. I bet until she told you you didn't notice any difference in your friend's?   I think mine may be permanently tender because I can't stop cradling them and checking everything is 'ok'.......Just glad they are still there! 😊 ... View more

Thanks for posting that. It is very reasuring. That' s the one problem with these forums. Yes they offer huge support in times of need and going through treatment but that means ladies on here are all going through the same scary experience and fears.   The ladies who have got through the treatments and been able to get on with their lives don't tend to come on these forums. Yet these statistically are the majority.    It's too easy when you are scared and worried to forget about the majority positive outcomes and instead think only about the negative ones especially when info is so readily available on the internet.. Waiting so long for radiotherapy doesn't help....the gremlins can take over and undermine positivity.   But we should be positive. It's amazing what they can do these days compared  to the past and things are getting better all the time. Hence more and more women are surviving breast cancer and leading long and healthy lives afterwards........boosting those positive statistics even more!   Look at Kylie Minogue. It's hard to remember she has been through this years ago as she is fifty and amazing! So is that 70 year old lady in the gym :) ... View more

You ladies are my heroes! The way you have quietly coped with things in your stride is amazing. I was offered bilateral mastectomy with  immediate implant reconstruction but like you had concerns over implants...... seemed like adding more surgeries, complications and worries. The dcis was small enough in both breasts for lumpectomy so I went for that but it really worried me being given the choice at the same time being told medically the outcome was the same, it was a personal choice of which one I would prefer. One side however turned out to be invasive so I am now waiting for radiotherapy which I hadn't bargained on and seriously considered the mastectomy option again but medical team persuaded me rads was best option as only needed one side.   The reason you are my heroes is that despite not wanting implants due to concerns I felt it would be the only reconstruction I would ever be brave enough to do. But after rads, as it affects skin, that isn't an option should I have a recurrence so it would be autologous or flat as mastectomy is only option if I have a recurrence. I am obviously hoping I don't but both boobs were affected and it's obviously something we all worry about especially when newly diagnosed. But I also struggle with the idea of going flat. You ladies have been honest and brave about your reconstruction experiences and shown despite the difficulties it can be done. Please know you have helped reasure me of this option and others too I am sure and I wish you continued good healing and recovery...and lovely new boobs :) ... View more

I agree the anomalies in treatment times for radiotherapy is concerning. Whilst I am dreading it I just want it to be done and over......and effective! After chasing it via my breast nurses for weeks I got consultant meeting 4th Sept. (3 weeks after onc. And 8 weeks after op) Oncologist already told me not to worry about timescale as guidelines were 12 weeks after last surgery which was 11th July for me. Radiotherapy consultant was lovely and reasuring and said I was low risk so studies show so long as within 6 months there was no difference. Reassuring I was low risk, not reassuring they were happy for me to wait 6 months. So I badgered her, my oncologist and breast nurses and got planning appointment next week but treatment only starting 2nd october.......1 day before the 12 week guideline!   If it's a guideline it's for good reason and should be adhered to by all health trusts, not be a postcode lottery or down to how pushy you get about it.   Had to laugh though......I ended up badgering them for something I would have given anything to get out of......really went against the grain but if I am having it it had flipping well better work :) ... View more

Hi Crossbar,   I know it's frightening but honestly you will be absolutely fine. Anaesthetists are very reassuring and you just go to sleep and when you wake up it's all over and done with. You will have a euphoric sense of relief (cou ld be the feel good drugs they put in the anaesthetic?). You stay in the ward for a couple of hours after so they know  your vitals are ok before they discharge you after you eat and drink ok.  The tuna sandwich they gave me was so dry it would have been a struggle for most people but as I hadn't eaten since night before and was last op of the day I demolished it and it will be the best cup of tea you have ever had after no drink from 6am. In and out in a day, it almost felt like an anti climax after all the build up to it. I only needed pain relief for 2 or 3 days after and felt well enough to be out of bed making lunch the next day. Crashed at teatime though but just listen to your body and only do what you can when you can. The most annoying thing was not being able to drive for two weeks till surgeon signed me off. Getting  the wire guides put in in the morning (if you need that?) takes a while but ladies who do that are great and numb you up and put you at ease.    Friday 13th? Bet that made you smile..   Wishing you a speedy recovery and good results x ... View more

Hi Old spice,   You need to speak to your oncologist about this. They can do predict tool with you and best advise you. Like any meds letrozole will affect people differently, maybe it will be better for you than Tamoxifen. Another lady I know is fine on Tamoxifen so is staying on that despite being post menopausal now. It's not one size fits all and may take a bit of trial and error, hence the suggestion of coming off for a month. Despite risk of breast cancer many women cannot cope with side effects of normal menopause so take hrt. Most will be fine but statistically c.2 in every 100 will get breast cancer because of it..the other 98 won't. Likewise tamoxifen and letrozole do save lives......but not all, some will still have a recurrence whilst on it, some who come off it won't and vice versa. But no one can tell you which one you will be. Let's face it it's a lottery who gets a recurrence same as who gets it in the first place and we do what feels best for us to cope with that in our own way.  Good luck with whatever way you choose x ... View more

Hi Oldspice,   Just read a thread on here where someone's life insurance policy taken out alongside mortgage paid out on stage 2 cancer as a critical illness so got her mortgage paid off.   Just in case it applied to your circumstances and could help. ... View more

Thanks Brumrunner, that is a huge help. I'll have a look at those links.   Hope we both do well in our recovery :) ... View more

Hi Firecracker,   Thanks for replying. I'm sorry you're going through all this again and now facing mastectomy. I hope you heal well.   Can I ask Have you been on hormone therapy? Tamoxifen or Letrozole?   Six weeks radiotherapy is double what they recommend these days. Did you use the deep breath hold technique (to protect your organs) when you did it then? I am glad you have been reassured about your heart and lungs. Most people think it's the burning during treatment that's the issue but not many think about organs being affected. If you read the NICE guidelines 're breast cancer though it is explained they are trying to effectively reduce using radiotherapy and chemo as survivors are living longer so can be negatively affected by after effects of treatment rather  than cancer recurrence e.g. Heart disease. So they are aware of it but I don't think many patients are. I spoke to a friends of a friend of a friend who had rads about same time as you who reassured me there was nothing to worry about as it didn't hurt and no damage to the boob (also small breasted) . But she developed another condition about a year later which could be linked and said she did now have a scar on her lung.....But she doesn't link these to radiotherapy .   Thanks and take care. ... View more

Hi Susan Manchester,   I have just started on letrozole  age 51 and already going through menopause so just increase in symptons. I wondered why not Tamoxifen first but have to trust the onco knows best. Also told ten years norm now so they obviously feel it works but about 3% advantage in predict tool so up to individual and side effects differ from person to person I imagine.   Don't suppose we can appreciate 5 years of symptoms when we have only just started but women do sometimes stop because side effects not worth benefit. It's their body and their decision, onco recommends but cannot make you take meds. So long as it's an informed decision. ... View more

Hope you make the right decision for you Brumrunner which is all any of us can do and hope for the best as a great deal of luck seems to be involved in the eventual outcome good or bad. You have to hope for the best but be prepared to cope with the worst of your eventual choice. I understand your confusion as both come with risks....it's my left side too for rads so heart and lungs damage is my concern....or fibrosis a few years down the line. But as you say, mastectomy has its own risks too which if you read Liz O' Riordan's online blog now you've read her book you will appreciate. Glad I'm not the only one torn. I have about a week to decide and BCN urges me to talk to radiologist first who will 'settle my nerves'. She is obviously concerned I do not live to regret mastectomy as 'We can't stick them back on (I know!). But I will potentially be the one living with damaged organs and a 'shrivelled' boob ( thanks for the candidness firecracker) if rads go badly. Could you not see your radiologist before making a decision?   The only reason I was offered a choice was because it was in both breasts, just one and they don't offer the choice......lumpectomy and rads  is the standard recommended treatment and as with most cancer treatment they underplay the side effects as otherwise most people would run a mile. Cancer is an aggressive disease so it needs aggressive treatment to beat it.   You don't mention reconstruction?   Firecracker.....what size bust are you? It's just that BCN assured me small breasted women fare better with rads with burns etc but short term effects not as much a concern as they heal. ... View more

Hi Firecracker,   I can only tell you what my consultant told me as I was nervous about having radiotherapy as knew it meant no implant if I had a recurrence. The rads affect the skins elasticity and healing capacity so complications are high so he would not attempt it.  but the other consultant at same site said it can be done but it's more difficult.   I have however read another thread on here where someone's consultant was attempting it after rads and she was questioning the viability. I also questioned it with this sites nurse phoneline and she said she knew women who had rads, completely flat then had expander in to have implant.  I   So ask as many valid sources as you can and I think you may also ask for second opinion? Be aware of the higher risks but I totally understand why you may prefer implant to autologous.   Good luck x ... View more

Hi Fuzzy Dee,   I am glad you are bouncing back and 'living'.   I did laugh at the bit about citalopram though.....waiting three weeks for my initial results sent me mad and I ended up asking GP for anti depressants and got citalopram.  It does as you say deaden sexual desire so after 5 days I stopped........BC isn't taking that too! That really would be depressing!  Plus I realised I wasn't depressed, I was scared and rightly so considering what I was going through. GP was very understanding when I told him which is odd as he is normally the grumpiest person I have ever met ( only see him when  take the kids as before this I was never ill).  Made me think I must be ill to get such a personality change in him but then a nurse friend told me GPs get more money for practice fund for cancer appointments so he was probably happy about that!  You have to laugh and at least someone's getting something out of it.   Good health and happiness to you all ... View more

Hi Evie,   I was given choice of bilateral mastectomy with implants or lumpectomy. In the end I chose lumpectomy as two small areas of low grade dcis so surgery and nothing else envisaged. Surprise came when invasive on left side so now looking at rads and had further surgery to clear lymph nodes as SNB positive but rest clear fortunately. Waiting for that I had to face the possibility it has already spread and have begun to think mastectomy might be better as I don't like long term side effects of rads and for greater peace of mind. But implants are so unpredictable. Great if you don't have issues with them but more surgery/pain from complications is obviously a concern and how I would take to the feel of them in my body. If no choice I am quite pragmatic and would make myself ok about it but given the choice I didn't want to take the risk....until I read about long term effects of rads like fibrosis of boob, heart and lungs.  Great choice eh? Limited time again for decision but need to be sure as once rads done no option for implant reconstruction and I couldn't do an autologous  one......I have become very squeamish about things being done to me body having had two ops in four weeks.   Thanks for the insight....I couldn't feel lump they found in my left breast which made me doubt be ing ble to trust myself for diagnosis plus doesn't a lump means things are further along than what can be seen in mamm o or MR I or ultrasound. Then again things are missed or unseen on those.  The one recurring theme in BC is there are NO absolutes......whatever route you choose it seems to be luck as to whether or not it works out, you can't make a choice at any point that will give you guarantees and as a bit of a control freak I find that hard when it's m e that's on the line.   ... View more

Hi typical me,   I am due to start rads after choosing lumpectomy over mastectomy with implants. Your question is one I have a vested interest in as even the tiniest recurrance and it's mastectomy. Which my consultant said wasn't possible after radiation even if it looked ok it's elasticity was compromised leading to complications with wound healing, capsular contracture and infections.   That said some women in here have gone through unplanned radiation to implants due to surprise results after immediate reconstruction and been fine.   The American websites seem to say some surgeons will attempt it but you have to accept the higher risk of failure.   I hope you find a solution to this and your reconstruction goes well. Please update us on your progress x ... View more

Hello ladies,   Did any of you change implants for diep?   What was it about the implants that you didn't /don't like?   Any insight you could shed would be appreciated.   Wishing you all good health x ... View more

Hi Lorraine,   I was wondering how you have healed after your bilateral mastectomy and implant reconstruction.   Have you got used to the implants and how they feel?   Has the feeling of tightness round your chest gone?   Have you any sensation or is it numb as BCN warned me.   Any advice would be appreciated and hope all you ladies have found some relief from the tightness. ... View more

Hi Smudgie,   Have you now got used to your new go on and the feeling of the implant? ... View more

Hi gingernut,   I hope your nipple and belly came out of the Lipo modelling ok and you are now recovered.   I would be interested to know how it turned out as my consultant spoke about Lipo filling should the dents where I had lumpectomy need addressing. He said it usually takes about 3 procedures but doesn't always work. I am also concerned when I read another post that the donor site can have indentations where fat was grafted......don't want to solve one problem but create another. ... View more