Breast Cancer Now Forum

Hi ladies...hope everyone is bearing up and feeling more comfortable  💕 I have only just found this thread and it rings so true with me. I am almost 6 weeks post mastectomy / SNB and it hasn't been a smooth ride. They started a delayed reconstruction by inserting an expander during my mastectomy. I then developed an infection about 10 days post op, which I honestly can say made me feel so ill. There was puss constantly filling my drain. Anyway 2.5 weeks post op I had to have another surgery to remove the expander and wash out the wound. The surgeon inserted some surgicel (material to absorb fluid) and I still have a lot of leakage. Had my drain out last Friday after 5 weeks (what a huge relief because it was so uncomfortable!) and now they have put a stoma bag over the wound site to collect any fluid....and yes there is still fluid coming out....I mean, there's not much more can happen to make me feel more disgusting! They took 3 nodes during my initial surgery, which all came back positive, so I was scheduled for an axillary clearance a couple of weeks ago, though that is now delayed because of the infection and because the surgeon said he cannot proceed until its all healed as if this infection gets into the node area it can be life threatening. So I still have cancer and no idea if this delay can cause a spread and this absolutely terrifies me. On another note, there is some limitation in my arm, I can't seem to lift my elbow higher than my shoulder and it pulls across my chest if I extend to far....think I just need to do more stretching exercises and I too have noticed my abdomen seems bigger! I have been complaining to hubby about this saying he's got to stop buying treats....but with you all saying the same it must be because of our situations....and I'm not having any doctor saying it's just because you can see it now....how can he explain me not being able to button my favourite top?!  😄 Anyway, onwards and upwards...let's fight this together, we are warrior women, strong and brave...or so everyone keeps telling me!  😊 Julia x     ... View more

Hi @dippy and @Cath9090  It is such a tough and frustrating time when things are changing every minute and you feel like you don't have control or have a clear plan...but I try and keep in my head that it is a good thing, as the care I receive is tailored for me at each turn and they are planning everything according to my needs alone. I also have invasive lobular cancer and was told I would need a mastectomy as the area was too big, 55mm and because there was another area that was suspect (second site came back negative). They also wanted to start a delayed reconstruction during the mastectomy by inserting an expander to make room in my chest. I am now 4 weeks post op from the mastectomy and SNB (also cancerous). Unfortunately about 14 days post op I developed a deep site infection and had to have the expander removed....I am still fighting the infection now, which has delayed the axillary clearance.  What I am trying say is that things have constantly changed but that has been for the benefit of me. I am also a health professional and cannot fault my breast care nurses and am truly sorry that you have had that experience. I was taught years ago that we can take charge of our care, where in our parents/grandparents time nothing was questioned and with that in mind I told the team that I wanted to change to another consultant. I didn't like the manner of the original consultant, I have in the past worked with many consultants who had a short, abrupt manner and I didn't want to be on the receiving end of that. It was changed, no questions asked. I was also really shocked to go from 1 week being fine, to being recalled from my 1st screening mammogram, having biopsies and being told I have cancer....some days I still can't believe it, everything has happened so fast....and I would have thought your BN would understand that....of course you will be thinking of it!! I definitely think for your own mental health you should be able to think about this and talk about it....locking it away will do you more harm! Always here if you need to talk  ❤️ Julia x ... View more

Hi @KazzyP  I filled up reading your post!! I am so glad you had this positive experience and could share it with us! I know you were frightened as to what it would look like after the surgery so it is pleasing to know it's not as scary as you thought. We do build these things up in our minds don't we  😀 I have my mastectomy next Friday with a delayed reconstruction and will be thinking of you as my role model! Get comfy and relax...you are a star  🌟 Julia xxx ... View more

Hi @KazzyP  Just want to send you some positive vibes for Friday. I used to be an Operating Department Practitioner (theatre nurse) and trained and worked in theatre for years....I remember a patient going arriving for surgery and someone wished them good luck and a colleague of mine said 'It's not about luck, it's about knowledge and skill' and I firmly believe that. I trust the theatre staff and they will have nothing but our best interests at heart. 💕 Julia xxx   ... View more

Hi Lou I am also 52...must be the magic number!! They said it will be a couple of months between mastectomy and reconstruction....they put an expander in during the mastectomy to make the space for the implants and then when the reconstruction comes around they will level up the other breast to match. I have the bigger variety of knocker and the implant will be smaller so I will have a reduction on the other side. I've told them that I expect the breasts of a 20 year old!! Decorating will keep you busy....just watch you don't over do it!! I am planning on watching a lot of horror and doing some writing...I've recently had a story published in an anthology but I want to have my own full novel published (no excuse now). How have work been with you? I have to say my company have been amazing and very supportive, which is really something that you need when this sort of thing happens.  Good luck with your results and let us know how you get on. Just a heads up....even though we know we have cancer, when they talk about the treatment it can be a bit overwhelming and emotional....but it's also good to have that bit of closure. Let it wash over you and don't worry if you forget what they tell you...that's what partners/friends/companions are for. Be very kind to yourself....we are women...we are strong!! Julia xxx ... View more

Well today has not been the best of days. Had my call to meet with the consultant, which I did today. He said the cancer is bigger than they first thought and there is another spot of concern in the same breast so they are doing a mastectomy with sentinal node biopsy and a delayed reconstruction, so they will perform a mastectomy and then place an expander in, that will need injecting regularly to prepare the space for the implant. So I will have the implant and a levelling up on the other side at a later date. I am pretty devastated....I love my boobs and because I have no/little symptoms its a bit of a blow.  But hey...at least we know what's going to happen and there are so many people in the world that are so worse off than me. Onwards and upwards ladies....power in numbers and this thing won't be us!!! Julia xxx ... View more

Well @Lemonsqueezy that is completely spot on!! There was a flurry of supportive messages when people first found out, all saying 'here if you need anything' but that's where I found it stopped. No one wanted to talk about it further and it's possibly that they are so shocked they don't know what to say, but I still feel I have to talk about it, for me it hasn't gone away. I feel if I talk about it then it's out there...I don't want to be afraid of it and if it's out there it's not just in me and I want it to be intimidated by me and not the other way round. I refuse to be frightened by it so will shout about it from the rooftops. I am aware though that many people are more private with their diagnosis and treatment. I kept everything extremely private until my true diagnosis, as I had convinced myself it was a cyst! But once I knew I would need some type of surgery I didn't think I could keep that to myself and I hate rumours etc so I made sure everything came from me as far as I possibly could. God I ramble on!! I do apologise!! We are always here if you want to talk about it...we are not alone....we are strong warrior women and are there for each other! Much love xxx   ... View more

Many hugs to you @KazzyP xxx I know exactly what you mean....like an out of body experience! It isn't enough we are side swiped by the diagnosis but the lack of control is quite overwhelming....it's like driving a car but not being able to steer! I too have felt this....not just with the medical staff taking over my health when I have always been so healthy, the uncertainty and the constant waiting, but also with having to hand over my project in work, it has been quite upsetting. Will you be having a reconstruction in the future? I suppose for some people it's best to take things one step at a time. I honestly don't know how I would feel in the same position and I send you my best wishes, hugs and prayers. Because I am not sure about my treatment yet I keep joking with my husband that it will be like having a tooth out (lumpectomy) and I will be back at work the next day....just trying to think of the least invasive...though those dark thoughts still pop in now and then. I found another good resource recently called 'Maggies'. They have locations all over the country where you can pop along and meet with other people in the same boat for a chat and a cuppa...maybe have a look and see what you think? Every little helps my love xxx Stay safe and please let us know how it goes. Julia xx ... View more

@Evie-S  I am so touched that you are thinking of me...thank you xxx I am still none the wiser!! I spent most of last week in a bit of a fog not knowing whether they would call me in or send a letter and if they did send a letter maybe it went to the wrong address (they did have an old address on my notes when they broke the news). In the end I rang the breast care nurse and she told me that my MRI results were not ready for last Tuesday's meeting so it would be next week instead  🙄 What torture is this!! I have tried to keep myself busy with work, readying things to hand over to my boss and I have been writing a lot about my situation and feelings....found that very therapeutic when I lost my mum suddenly 10 years ago. This weekend has been a different kind of therapy. My daughter (22) came home....finally!! She was meant to come home a couple of weeks ago when she finished university but then caught Covid. She was then late starting her internship in London and on the day she was allowed out of isolation she had to travel there and didn't have time to come home  😢 That put me in such a horrible situation as I needed to tell her the news and I wanted to make sure she knew before anyone else, I had to do it over Facetime. We have always been so close and she has been a rock to me in the past so her coming home has been quite magical...I feel I needed that.  Hope you are doing ok xxx ... View more

@Evie-S and @Eglis ...thank you so much ladies for your replies. Between the two of you I have received confirmation that this is all normal. The doctor's are having a meeting about me today  😕 to determine if every bit of it has been detected before they decide on lumpectomy/mastectomy. The waiting is awful because if I don't keep myself distracted my mind is in overdrive! How long does all this take? I keep telling people that I reckon it's just 'a mild case' and will be like having a tooth out  😁 And...I have been spending money like a mad woman!! I am usually very careful but if I see something I am buying it!! I hope you ladies are both very well...you are both so strong and brave. Much love to you. Julia xx ... View more

I totally understand everything you just said! I haven't spoken to my sister for a couple of years but she turned up on my doorstep crying....really who does that help?....I haven't cried so that wasn't what I needed  🙄 Unfortunately I work in an environment where we deal with medical devices and I used to work in theatre so when it comes to diagnosis and surgery it's sort of run of the mill....though I am not usually on the patient side. I do apologise...me head is all over the place! xx ... View more

ZippyZoo it's like you are in my head!! It's so good to hear from someone who is going through the same thing at the same time! I have been fine for the last couple of days then the dreaded letter landed this morning with the details of what they found and since then I have had about 3 crying outbursts! But I refuse to let this push me down! That's it...no more tears! Can I ask have you told many people and what you have done about work? I didn't tell anyone anything until yesterday but with every person that knows I feel it's a burden lifted (don't quite know how that works!) XX ... View more

Hi ladies, can I join this small and select group please? I had my diagnosis on Wednesday, invasive lobular breast cancer Grade 2. Had an MRI yesterday to see the extent to which it has invaded my breast before they decide on lumpectomy or mastectomy. This is like a bolt out of the blue as it was picked up on my first routine screening (I am 52) and I had convinced myself it it was nothing...fibrous tissue or an anomaly because I feel well in myself...so have been in shock ever since. I have made jokes about it, telling my husband to make the most in case they lob one off, because I would rather laugh my way through this rather than cry and now today I received my letter to my doctor informing him of the situation and have had a couple of fits of tears. I'm supposing this is all normal and everyone is different? I really hope you ladies are soldiering through! We are women - we are strong! Julia x   ... View more