Breast Cancer Now Forum

Hi Carmen I had my scan today. It was OK no metastasis. It coincided with the last day of radiotherapy. This week of waiting certainly put things into perspective. I think my life will always be different after this week. I hope I can keep the feeling of gratitude and what is really essential and perspective I have right now.  I thought yesterday what I was going through couldn't really be much worse, on a personal level, yet I dealt with it.  Feel ready to move on after all this treatment and get back to life. Slowly -first need a period of building my strength back up. I cried when i got back home and saw my 10 year old just thinking I am going to see him grow up.  Hugs to everyone.  Let's turn this disease into an opportunity to live our lives as beautifully as we can. Connect with the people close to us, value friendship, our inner selves, meditation, yoga, gardening, travelling....  Hugs to everyone.    ... View more

Thanks Shi, yes I am grateful to my team for being thorough. It's true i had been over doing it and I didn't think about radiotherapy dehydrating me. I hope that was it. My team here say radiotherapy doesn't make you tired, that the travelling does. But i do think that all that radiation must have some effect on the body.  I am taking corticosteroids, I read it is to reduce inflammation on brain for tumours, i'm taking them I don't want to know if I have a headache although I am so worried and in shock it's hard to tell how I really feel.  Yesterday I celebrated my six year old daughter's bd with her school friends which was a blessing really because it took my mind off it. But i did have silent tears streaming down my face making the cake.  Oh dear this is so horrible.  NAJ I agree with Carmen if you can get a fitting with someone who specialises in masectomies it might be helpful. I ordered Amoena bras online and got the wrong sizes. I will see a prothesist lady when I get my silicone prothesis. They are waiting for radiotherapy to finish and scar to heal. Be gentle on yourself, I am very energetic and find it hard to slow down but sometimes we just have to listen to our bodies. Your holiday sounds lovely. Maybe you will end up climbing mountains.  Carmen I agree radiotherapy made me teary as well, the end of treatment etc. Then I got used to it because it is so long-5 weeks. And focused on seeing my friends and enjoying the sunshine, I sometimes nearly forgot my radiotherapy appointments.  After this dark winter so lovely to enjoy spring.  Hugs to everyone. Thanks for the article Michele21, I already shared it, it's very good, everyone should read it.    ... View more

Hi NAJ My prothesis is still the soft tissue post surgery one, I haven't had the proper silicone one yet. It looks OK. I have been wearing an amoena top most of the time, it has a pocket for the prothesis and has a kind of built in bra for the other breast. It gives good support and looks nice.  I wear it all the time instead of a bra. The mastectomy bra I bought is too tight and makes my cording worse. I think there are different models for the prothesis, can you get an appointment to see your surgeon for another lighter prothesis? It's so important to feel comfortable with it and be able to get on with life not worrying about our breasts or lack of breasts.... It's crazy your nails are still falling off... must be tough for morale.  My hair is at last starting to grow a bit thicker as well. I still wear my headscarves, there is no way I am going out looking like a toilet brush. But by end of June I think it will be alright, at least to go swimming.  I just finished week 4 of radiotherapy. One last week to go. It's going OK, very red at the moment but doesn't bother me too much.  Everything is going OK except this morning I woke up with really bad headache, nausea and weakness. I called the hospital to say I wouldn't be able to make it in for radiotherapy (I couldn't even drink a cup of tea) and they said get a medicalised taxi and we will do a brain scan after radiotherapy.  So i went to the hospital and saw the radiotherapist and she said I will have the scan next week just to out rule a brain tumour. So feeling in shock.   Maybe I have been over doing things with all the sport and seeing friends and generally having a great time enjoying the weather.... and my body is telling me to calm down.  Hugs ... View more

Hello Carmen that is great that your hair is growing back. My eye is still sticky too and I can't wear eye make up. I just wear one contact lense when i am fed up with my glasses and found out I can see ok... it's great you went out for dinner! Enjoy life as much as you can!!!  My radiotherapy is OK, I got used to lying on the table half naked, nurses scribbling on my chest and having the machine move around... they are quite friendly, and the times revolve around my gym classes which is really nice of them... I have done 12 sessions have to do 25 in total. I don't have to hold my breath even though it is left side. It's not great you had to wait a whole hour! Mine are exactly on time it is impressive. We are in and out all day long..... Chester brown bear that is sad feeling in limbo after treatment has finished. But it is so long and so intense i'm not surprised. I actually feel really at home in my hospital, it's like a cocoon where they make me better and I feel safe there. Will be strange not to go anymore and pick up my life professionally, back to running about non stop.... Hugs to everyone!    ... View more

Hello  Yes the allotment rules were in France not UK. The association created their own rules. It was an experience in growing vegetables and an experience in human nasty behaviour.  Your course sounds good but such a pity it is online, more impersonal. The reason I like the exercise classes are: they make me feel good about myself afterwards and they happen in groups with real people!! The trainer is really funny and gives off great vibes. It's exactly what I need. I have probably never felt so vulnerable... at home with really ugly hair like a toilet brush, one scar on chest for a breast, gungy eye (not sure why it gets infected all the time) and being radiotherapied every day. I feel it drains me.  I try to make the best of things and as NAJ says it's not worth living afraid. Some days I feel all euphoric that I am alive and others all drained. It's up and down.  I never asked for my prognosis either. The fact I have a bit of chemotherapy added to HER 2 treatment obviously means it might come back. But they are throwing everything at it. I think it's like a lottery but with a horrible prize.  Yes I suppose it is the nurse's job to explain. I just felt his attitude was caring and I appreciate small things these like that. I had already seen the radiologist for the official explanation before I started treatment, but she'd been colder and more technical.  Hugs! Thanks for your messages ... View more

Hello Carmen you made me laugh again with the "dirty plot" letter!! I used to get letters with warnings, they used to stress me out more than work or children. They had a comitee patrolling the allotments it was like the weed Gestapo. I tried to do permaculture and covered raised beds with leaves (I went to fetch bags from the forest nearby). They absolutely hated that.   Naj's allotment sounds even more amazing and beautiful now with the daffodils. And enormous!! It's good you are allowed fruits trees. I would feel so proud if could grow vegs for two people. I had lots of raspberries and made jam for years that was great I loved it.  My radiotherapy is on my left but I don't have to hold my breath. I will ask them why and about the dose. It will give me something to chat about. The first sessions I went in half naked and undignified, lay down and shut my eyes for 20 minutes.  It feels so impersonal. Yesterday the young nurse asked if I had any questions and i said well really i'm just following the protocol and don't understand how it works and he explained stuff. I thought that was very nice of him.  I started feeling tired again. I think it is the radiotherapy. We are back to killing cells. What are biphisphnates? Did you think you needed a scan for bone density Naj? Or for spread? I also feel all tearful after the sessions. I worry about it coming back in a year or two or five. It's horrible. I realised I feel safe in my cancer hospital and the thought of going back to work or some kind of normal life seemed scary. That is so unlike me usually. I understand why they didn't want me rushing back to work as soon as radiotherapy finished. Plus will start hormone therapy at the end of radiotherapy.  I'm so grateful for my keep fit classes. Monday and Friday it is muscle renforcement, Tuesday and Thursday walks with Nordic stick things, Thursday pilates, Wednesday day off.  Tail Chi in the park sounds great and the zoom is better than nothing. NAJ if you are doing all that gardening you must be really fit and strong, all the digging and carrying.  Do you like going for walks?    ... View more

Yjj thanks so much for expressing that. I agree 100%. It is not just UK that created the monumental F up though, it is the same in most Western democracies. I live in France and I am half Spanish and it is exactly the same situation in France and Spain as UK. Its been making me mad and furious too. At least you don't have compulsory face masks in UK. It is like living in a science fiction movie seeing masked zombies everywhere.  I feel lucky too my cancer hospital is great, on Friday I went for first radiotherapy session and then my three weekly targeted therapy cos I am HER 2 positive, and the psychologist just popped in to see how I was doing. Little things like that make such a difference. Also they haven't cancelled our keep fit classes despite France going into lockdown and closing schools again. For me these keep fit classes (inside the hospital) are a life saver. Usually I live too far from the hospital to go regularly.  Ha ha we both passionate antilockdowner "conspirathists" 😂 😂 😂 in love with our surgeons.  So glad you don't need chemo though. It messes your body up. It's nasty stuff better to avoid it if you can.    ... View more

Ha ha that's so true Carmen, lying down with my chin strapped to the bed (they made a kind of chin plaster and use it to immobilse my head) and a mutilated scar and floppy breast on display is so not relaxing!!! The undignified things we have to go through!  I have arranged to stay at my inlaws a couple of times a week because they live close to my hospital (I have an hour's drive). Since the kids are off school due to lockdown they will come with me. See how that works out. At the moment they haven't cancelled the keep fit classes at the hospital so I will be doing as many as possible. My husband and inlaws will have to take care of kids.... The kids will be off school for at least 3 weeks. I have been looking forward to being able to go to these keep fit classes for months.  NAJ your allotment sounds amazing! I had one for about 3 years and I loved it but I was rubbish at it and the kids were tiny and i always went away too long in the summer holidays so in the end I got kicked out for having too many weeds. But it is one of the best things to do, I think, grow your own food.  We saw inlaws illegally today for Easter eggs, I got some "oh hasn't your hair grown back yet" comments. Well no, if i'm wearing a bloody headscarf it's because my hair looks like a concentration camp victim. It's so slow!!!! But I definetely feel I have got my energy back after chemo. Not looking forward to starting hormone therapy but that is why I want to get into the habit of keeping fit, I think it's the best way to deal with side effects.  Hugs to everyone. Hope you having nice Easter weekend. ... View more

I ended up not wearing my wig it doesn't feel natural, plus I didn't want to hide the fact that I was going through chemo, the opposite actually I wanted it in everyone's face. All the covid hysteria makes me mad to be honest, imagine if they gave cancer as much prominence in the news. So I decided to buy  a few basic chemo caps because they are very comfortable (I like masumi headwear) then bought loads of inexpensive pretty scarves to change my look.  I didn't find it too upsetting to lose my hair, but it is taking ages to grow back.... I lost it in October.  Hugs!!!! ... View more

Hello yjj Thanks so much for the yoga link that is exactly what I need. We are locked down from tomorrow in France schools closed, so I need things like that not to lose my sanity!! Thank goodness the schools were open when I was under chemo.    Have been enjoying the sun going out a lot it's been great this week. Cording is better, my chest feels tight but I sup pose that is normal. See how the radiotherapy affects scar then... I agree the tattoos even if they are tiny are one more kind of violation of our bodies. I am breastless, bald with ugly white hair growing back in patches and normal now geometrical points on my chest !!! But who cares I am alive and feeling good. We have to wear masks every time we leave the house in France, 130 euros fine if not, so if I wear my sunglasses I look kind of weird:  Crazy!  Glad your operation went well doodle!! Take lots of time to recover and pamper yourself. We deserve all the sympathy we can get! ... View more

Hi Yvette Would be great if you have time to send yoga for cording links. I started doing sun salutations but then it seemed to slightly reopen my masectomy scar, either that or the massage I tried to do on the scar. In any case I stopped all streches and touching scar until it has properly healed. Also I start radiotherapy on Friday for five weeks. The scar is unsightly and radiotherapy isn't going to help.  The cording in my arm is better but armpitt still weird. I will have physiotherapy but they were all booked until May in my area so waiting to start Are you glad to be back at work? I am off for nearly a whole year. I won't go back until September.  Pips how are you? Thinking about you and your scan. Sending hugs.  Noodledoole good luck for your surgery. Hope everything goes well.  ... View more

Hello Mrs Mcquincey, congratulations on finishing chemo at last!! You are so young... I hope your immediate reconstruction goes well. It's good you have that option, my oncologist said I couldn't have immediate reconstruction due to radiotherapy and survival chances. At 43 I think it is still relatively young to go flat but I am dealing with it ok, not much choice really. You have a beautiful family.    NAJ I am so sorry about your dog. The end of the treatment is an anticlimax I agree, you need lots more time to recover. That is really terrible for your mother in law. I am so sorry.  York 75 that's great you have hair. Mine isn't growing back properly yet, have bald patches at the front and to my utter horror it seems to be growing back mostly white. Oh my God. The kids say I look like grandad. Getting a tiny bit fed up of my headscarves but there are worst things.  Start radiotherapy on Friday.  Hugs to everyone ... View more

Here is the article.  https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf   Link doesn't work but google: after the treatment finishes then what Peter Harvey   ... View more

Hello everyone So sorry about your psoriasis Mandy. So unfair to have to put up with it  after all of this. I really hope it calms down soon. My mum gets it badly on her back and legs. People who say great you've finished all your treatment have no idea. They might be well intentioned. But they have no idea. My cancer doctor said at my first appointment to discuss treatment: often the most difficult part is the "afterwards". I was confused by what he meant. He meant when the treatment has finished. He said people can struggle after treatment to get back to normal. I read a really good article by a psychologist about it, will post it if I can find it again.  Carmen thanks for your advice about tattoos. They are not really my thing but some of them are quite pretty. I am finding the masectomy the most challenging part of my treatment, much more than chemo. The roller coaster cliché is so true. I feel fragile and stronger at the same time. Do you feel ready to go back to work? My doctors say we need a couple of months after treatment finishes to recover before going back to work, and then they prefere if it is part time at the beginning. I teach and won't be going back until September. From the beginning of treatment they said i would need a year off . I definetely feel I am getting my energy back now but sometimes have slumps.  Linda thanks for the photo... it looks very sore. Goodness so much to put up with. Hope it has calmed down. I have appointment tomorrow for the tattoos. They are going to zap lymph nodes in the throat as well as frankenchest.  It's so funny now we have all discovered we need to live in the present and have amazing adventures everything is banned 😅 😅 😅 😅 . Tough luck!!!  I certainly agree no time like the present. I think I already knew that but will appreciate it even more. And maybe put myself first sometimes. When I was diagnosed the only thing in thought was I need to live for my children. But now I think I need to live for me as well.  Big hugs to everyone!!!  ... View more

Thanks a lot for the link blackcat, will watch it tonight. It's helpful to hear about other ladie's experiences.  Silvertong thanks for advice, I will write down any side effects to see if there is a pattern. Had first kadcycla on Friday and so far I feel normal. Am getting my energy back after 5 months of neoadjuvant chemo. We are lucky to have these new treatments for HER2 positive cancers... so glad I don't have side effects yet this time. Have a heart scan booked for April with a cardiologist, but they told me not to worry that the slower heart beat could be due to anemia. I feel in good hands...       ... View more

Hello Pips Nice to hear from you! Let me know what they say about being triple positive. My oncologist said I was lucky to be HER 2 positive because they can treat it successfully with herceptin. It's a kind of miracle drug for us.  But when I looked it up it said HER 2 is more agressive and thanks to herceptin we have similar outcomes to other hormone positive cancers.  I think they try to cheer me up by putting a spin and making the news seem good. But i cope better if they are really honest.  I had my pathology results. Residual cancer in breast so I am having a new version of herceptin with chemotherapy added (Kadcycla), but targeted chemo this time. It's to improve survival chances and like you I feel lucky I think my cancer hospital are being fantastic.  I have appointment tomorrow to prepare for radiotherapy. I found it hard to find a physiotherapist for cording, they are all overbooked where I live... will have to wait a bit until one becomes available. I am stretching and even doing some yoga while waiting for appointment. What do they do in physio to help? Sounds tough waiting for CT scan. Sending hugs!!!!!     ... View more

Hi Rosie and blackcat  yes it is Kadcycla and I will go on it because I got pathology reports for the tumour and there was 20% left after chemo.  I asked my oncologist about side effects from Herceptin and she said the legs swelling/ aches would be due to docetaxel. Hope she is right and it doesn't come back then. Sounds awful feeling like a ninety year old woman climbing up the stairs. I had that on chemo. So good that you have nearly finished!! I am just starting, will be on Kadcycla until November. And starting tamoxifen too.  My nails are flaky but I was on chemo for 5 months.  I need a heart scan with a  cardiologist because my heart beat is slower than normal (they check with the radioactive TEP scans at my cancer hospital).  I'm 43 and was in good shape before all this... it's crazy to think my heart might be suffering but I am in their hands now... I have to trust them.  ... View more

Hi everyone Feeling a bit down. Had my pathology reports yesterday. Good news the cancer had gone from lymph nodes. But 20% residual left in tumour, so will have a new treatment for HER 2 with additional chemotherapy. It's called TDM or Kadcycla. The oncologist said it shouldn't give any big side effects, will need it every 3 weeks until November. Also my heart scan was slower than normal so need to see cardiologist to check (herceptin's only big side effects is it can mess up your heart).  What is getting me down is the masectomy scar, I saw the surgeon yesterday he took the stiches out. It is so ugly I am shocked. It's one thing to have no breast another to look like frankenstein. Urghhh. It's tough.  My arm hurts with the cording. I suppose it needs time. I just feel like crying today and hiding under the covers.  Also saw radiotherapist, will have 5 weeks every day starting April. Radiotherapy marathon compared to UK you get one week I think? They have a different protocol here.  Anyway sorry to moan. Maybe just tired and overwhelmed by everything, it catches up.  Hugs to everyone !! ... View more

My first oncology appointment she explained lots of things that I didn't understand. Then they sent me to a nurse to explain everything again. And when I had the operation to put the box under my skin they sent yet another nurse to check I had understood everything....  I did end up understanding!! It was a lot of information to take in.  What was tricky was all the different medicines I could take for all the different side effects i might have. All the anti nausea drugs, antifungal washes, mouth washes... and injections after chemo to boost immune system, what to do if you have a fever...  It's a strange time. The monthly chemo groups are really great. They helped a lot.      ... View more

NAJ you made me laugh so much!! I had to look up Max Wall though. Love your attitude!! It's great you feel comfortable to just go out natural and not care what people think. And your motor bike cooking travels sound great.  I never wear my wig its too fake, but always wear headscarves. My kids would be mortified if I turned at the school looking like Gollum, which I do, my hair is growing back like yours, side and back but not on top yet!! Ha ha. Hope your nails are OK. I would get upset by that.  Feeling OK about new body image... although have gone ultra feminine- even wearing heels!! I haven't worn heels for 12 years since I had my kids. Definitely some kind of unconscious thing going on about not losing my femininity. I went to a kind of second hand warehouse and bought loads of new (second hand!) clothes. Going through a kind of second teenage 😂 😂 . I wonder how long it will last... I read that stress doesn't cause cancer, they did studies on refugees  and people who had been through very difficult experiences and they didn't get more cancer than others. The doctors told me they just don't know why some people get it and not others. If you didn't drink at all that's a good example of it not making sense.  Carmen that's the last thing we need, hormone treatment making our hair even thinner!! Oh dear. I haven't started mine yet, i'm on herceptin at the moment. I'm not treating my daughter differently because she is a girl, it's more because she is younger than her brothers and she sticks around me all the time so she will see me getting dressed etc.  And she is so young she will get used to my body. The boys find me gross enough as it is. It sounds so hard for your boys with both parents undergoing cancer treatment at the same time.  Linda I will get psyched up about maybe not being able to wear my prothesis then during radiotherapy just in case. That will be hard... will welcome lockdown !! The fake soft boob is a life saver for me.  Hugs to everyone!!  ... View more