I am a new user and not familiar with how to post yet,I will get there! X
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Oh no @suedot !! That’s rubbish. I hope you aren’t suffering too badly with it. Just when you thought you’d got your tastebuds back.
Hi @chakakhan I’m so sorry to hear you have had upsetting news. I’m sending you a big hug first and foremost as we’ve all been there and know what it’s like. As luck would have it, my plastic surgeon is Mr Kieran Power! I am at Royal Marsden Sutton and am due to have my mastectomy on 7th August. I have had 4 unsuccessful ops (Hadfield’s Procedure and 3 lumpectomies) at another hospital before switching to Royal Marsden. I chose Ms Katherine Krupa as my surgeon and she recommended Mr Kieran Power as plastic surgeon. I don’t think you need to rush into making a decision as to what type of reconstruction you have. I am having a tissue expander after my mastectomy which they will gradually fill with saline to stretch the skin and after 6 months I will have either an implant or DIEP Flap procedure. I have been told that at present I don’t have enough spare fat for the DIEP Flap so it will probably be an implant but nothing is set in stone. I can get you the contact details if you would like them. Sorry I didn’t reply earlier, it was a busy weekend. We can DM if that would help.
Salbert
x
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Hello Salbert,
Thank you for your reply and warm welcome,the virtual hug is needed!
Kieran Power I was looking at him too along with Mr Gui.
Will Kieran Power be doing your mastectomy?
I am glad you are in good hands now after your journey so far.
I am just off to see the BC nurse to look at mastectomy pictures and probably to check on me as I was crying uncontrollably on Friday when they said I needed a mastectomy and running late.
However I will message later and share more of my story.
Thank you for reaching out I feel a little better and not so alone.
ChakaKhan XX
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@chakakhan You are not alone. You really are not. I’m so glad you are going to chat with the BC nurse. My mastectomy is to be performed by Katherine Krupa and Kieran Power will be doing the reconstruction. I feel very confident in their hands. I did my homework and chose someone who came highly recommended. She is lovely and very nurturing as well. Remember there is a helpline on this website so that you can always talk to a BC nurse if you find yourself worried or upset. I’ve spoken to them a couple of times and they were really reassuring.
Salbert
xx
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Hello Salbert,
Thank you for your kind words.
Our journeys are taking a similar path right now though I am sorry you had 4 unsuccessful operations before this point but it sounds you are in good hands now with your team who sound great.
I am doing a referral to the RM even if self paying as I haven’t had the best experience so far with my hospital team so far.
I have just finished my chemo and surgery is planned in the next few weeks, then radiotherapy
So a couple weeks ahead of you and just getting over chemo.
I have HERT2+ grade 3 in my lymph nodes so lymph node clearance as well.I was diagnosed just before Xmas.
My cancer was missed in my mammograms unfortunately but that is another story!
Funnily enough when I saw the BC nurse yesterday she showed me the tissue expander that I may have that you fill with saline,she said I might get this and they let it down before Radiotherapy and fill it up again afterwards.
She also said it can be kept in and most people keep it instead of having it removed for an implant, not sure if they said the same to you?
I have been told I can have an implant or DIEP but haven’t seen anyone to discuss this further and things keep changing unexpectedly in my treatment and I am not sure if it advised to have a DIEP then radiotherapy for instance.
I would like the contact details please and to DM would be great.
Best wishes Xx
Hi @chakakhan
Welcome to the forum.
Here’s a link for help with using the forum
Glad @salbert was able to reply regarding second opinions. I was lucky that I didn’t need one and was very happy with my consultants and treatment plan.
I’m glad your chat with the breast care nurse went well, it’s so important to get a good relationship with them.
Take care , we are here for each other 
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@chakakhan My goodness me, our stories are similar. Mine was also missed in my mammograms and scans (it was hidden away and you can just about see something on the last scan but it wasn’t followed up on and a year previously they chose not to do a biopsy) and so a year later had made its way to my lymph nodes.
I’m glad to hear that some people opt to keep the tissue expander as I like the thought of not having to have lots more invasive surgery. I haven’t had that said to me so that’s good to hear. Personally I don’t want to have the DIEP Flap procedure. It sounds like a huge op. I’ll DM you now.
Thanks for posting the info @naughty_boob ; you really are the Breast Cancer Now Encyclopaedia Britannica or our equivalent of the chaser on The Chase! 
Thank goodness. Don’t ever stop!
Salbert
xx
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Hello Naughty Boob,
I am glad you were happy with your consultants and treatment it is very important you have confidence and trust in your team.
I don’t have a good relationship with my BC nurse and have just been dealing with everything by myself …till I joined the forum so I feel so much better now!
Thank you for your message and support Xx
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Hello Salbert,
Thank you for sharing your journey,it is disappointing to hear that a biopsy was not done previously and there is now a spread to lymph nodes.
I am only glad that you now report you are in good hands at the RM a leading cancer hospital and have a great team you trust and I am wishing for you all the best as you go through your treatment.
My cancer has been missed on a mammogram approximately three years ago during this time it progressed to stage 3 and had spread to my lymph nodes.
Unfortunately this has spread even further affecting more nodes due to hospital delays starting the chemotherapy after diagnosis.
I did try to communicate changes to my breast during my mammogram but I was shut down each time.
After receiving the all clear I rang and spoke to the unit and expressed my concerns as I felt they were doing women a disservice and I told them that they are going to miss breast cancer in a woman in the future.
Unfortunately I did not know that was to be me.
I keep thinking if only but I have to get on with the battle that lays ahead.
Yes the tissue expander the BC nurse said they can cut the end off and stitch up and most people do that,…but interesting to see if your team agrees.
At the moment I am open to learn more about the DIEP in a consultation even to have considered all options perhaps for the future, however like you I am more leaning towards the implant/expander.
In addition they’re maybe more considerations as I have to have radiotherapy too…are you?
The BC nurse also said that if you have an implant you can opt for DIEP in the future, however if you have a DIEP first and it fails or radiotherapy affects this procedure then you can’t have it repeated.
Bye for now,
Chakakhan Xx
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How do you DM? 
Hi @chakakhan
The way that I get to my Inbox to DM is to go to my profile pic in the top right hand corner of my screen, click on the three lines next to it and then right at the bottom of the dropdown menu there is an Inbox option. When I click on that it takes me straight to my DMs. Did you get my message to you? I sent it 2 days ago. Hopefully you will be able to see you have a message if you can see an unopened envelope symbol over your profile info in the top right hand corner. Click on there and see what options you are offered.
I get where you are coming from. Knowing my bc got missed, I now look back at pics from between the time that I got the initial clear and my diagnosis and think to myself “You had breast cancer then but didn’t know it”. I have learned that you have to advocate for yourself if you know something is wrong. Be calm but pushy, is some great advice I was given.
Thanks for that info re the tissue expander. I will mention this at my next appointment about my op which is 19th July. That’s going on my list!
I also have to have radiotherapy due to the lymph node involvement. I am told that it will be 2 months after my mastectomy so I’m guessing early October. They said the operation site needs to be fully healed or it can break down.
We must keep each other posted as we are at similar points on the same path.
Have a great weekend.
Salbert
x
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Pretty new to looking at and posting on forums so only just found this. Wish I had looked for this type of support sooner rather than doom googling.
Diagnosed on 26 Oct with triple positive 19mm lump. Ultrasound looked like clear lymph nodes so had lumpectomy first. But nope 4 out of 13 of the nodes were positive.
Done 4 ECs and 9 out of 12 Paclitaxels. Had 2 Phesgo injections so far (not my favourite!).
Sorry just to list all the medical stuff but I think it helps me to see I am similar to everyone here. Have started to get a bit battered emotionally and entered a bit of an anxious spiral. Reading all your posts (in one sitting!!!) has helped as it has made me think about all the things we go through and I’ve realised that my emotions need to catch up and of course I’m scared.
Thank you everyone. You all help more people in more ways than you can possibly know.
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I’m glad to say I officially had my last chemo today…so glad to finish this part of my journey…however taste has already gone and side effects have started! Though this time I know I won’t have to go through this again so it will be worth it!
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Hi @norts
I’m so glad you have found us. You are not alone. Doom googling is one hell of an apt expression for that thing we all do but really should not. A huge part of this journey is keeping our sanity in check and I believe that it plays a massive part in our overall health. Anxiety and stress causes a lot of illness.
I think we all know the terror that comes with this diagnosis but it’s also really heartening to hear from the wonderful women on here that have come out the other side. You are quite a long way in to your treatment now so it’s definitely the right time to do some work on your emotions about it all. I had counselling and will be booking onto the Moving Forward course fairly soon, I think. Are you done with surgery or do you need to have more? I have one Paclitaxel left to go and have my mastectomy in just under 6 weeks time.
But hey, chat away on here. I feel it helps so much to share and compare. How are you today?
@chellebelle MASSIVE CONGRATULATIONS!!! 
I am so chuffed for you to have finished chemo. Hopefully I will be where you are by Friday. It seems insurmountable at the start but as everyone said, you do get through it, one day at a time.
Personally, I have had to call a halt on wig-buying as it was getting out of hand. I have bought some lovely ones but I realised it had gone too far when I couldn’t get to sleep one night, despite having taken a sleeping pill. Before I knew it, I had reached out and grabbed my phone and ordered another one. Something within me having been satisfied, I then rolled over and went straight to sleep. In the morning I could not remember what I had ordered or from whom. 2 weeks later this monstrosity arrived from China. And now you see why I have had to implement a self-imposed ban!
Love to you all,
Salbert
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@salbert I am good today. Lots of sport to follow ( T20 cricket and Tour de France cycling), a sit in the garden with my neighbour and me and my 15yo son testing a board game we have developed. Not all my days sound so impressive!! A lot of distraction from emotional and mental things. I’ve also been thinking about a Moving Forward course but am not quite there mentally. I had my surgery first so next step for me after chemo is radiotherapy.
I have to say I am still chuckling about the knitted hair.
Hi Sal,
I have been reading all the blogs and I’m amazed at how well everyone is doing, I was diagnosed in November 2021, I had a lumpectomy and it seems the IDC was gone with the biopsy, it was 6mm triple positive, what they found was DCIS high grade, my ki-67 was 11, no chemo, and my oncologist said no Herceptin because there was no benefit as the cut off date is 80 and I was 77 at the time, I went on letrozole for 10 months, had to get off couldn’t take the side effects, anyway I had mammograms every six months and I’ve gotten the all clear, next one is December.
Have you ever been told that herceptin doesn’t work for everyone, I did have radiation and I feel great, I’ve moved house since my diagnosis, starting off with new doctors is a pain,
Why did you have to have so many operations? And how come they recommend Herceptin, they don’t usually give it under 5mm, I really was going to refuse it if offered, because I have high blood pressure, I was afraid of heart problems.
So I’m rolling the dice!!
When do you start Herceptin?
I wish you good luck with it,
Trish
Hi,
I’m one of those, except mine was 6mm triple positive with DCIS, no chemo or Herceptin, I’m 2 1/2 years on next Mammo is December, fingers crossed.
Like you I read if it comes back it’s usually in the first couple of years, and it’s generally local, I was on the letrozole for 10 months, had to get off because of the side effects, doing better now that I’m off of it., are you taking any hormones? If so how are you doing?
I did do radiation!
Trish
@juxined I hope this finds you and you can come and join us HER2+ gals. I couldn’t think of a better crew even if you threatened to take away Toblerone for the rest of my life.
@norts I am really glad to hear you are feeling ok. I also have a 15 year old son but we haven’t developed a board game so you are way ahead of us there! We once tried to sit down and learn how to play Uno but a song came on the radio that we liked and we both leapt up and danced around the kitchen and came to the conclusion that focus was not our strong point. That’s extremely impressive. Let us know what happens with it. How exciting! It’s so important to distract ourselves from this bc thing. It’s always there, like a fuzzy irritating noise in the background but very satisfying to thwart it here and there by managing to push it from the forefront of the mind for a bit. Glad the knitted hair gave you a chuckle. It has, by far and away, been the most popular of all the headwear, hats and wigs I have invested in. How can that be??!! I’m not sure she is my favourite cousin anymore! Let’s keep in touch re the Moving Forward course. I still have a long way to go with treatment so I may leave it until I am fearful of being pushed out of the nest and being asked to fly on my own. Enjoy the sport. England match this evening, I believe.
Hi @Flan Great news that you have the all clear after your experience in late 2021. I have been told Herceptin is something of a wonder drug but a nurse in Maggie’s told me that sometimes they just don’t know why some people get a recurrence or why treatment doesn’t work. The stats are fantastic though, aren’t they. I feel your pain, moving house. It’s wretched. I’ve done it too many times to count and moving doctors is particularly worrisome. I hope you’ve found a good one.
The reason I had so many ops is that my consultant wouldn’t agree to a mastectomy and kept performing unsuccessful lumpectomies until I jumped ship and went private. At Royal Marsden they put me straight onto chemo and Herceptin due to the HER2+ status and said it would be a mastectomy afterwards. I wish I’d gone there right at the start. I get Herceptin as it had made its way to my lymph nodes. So far no heart problems. I started Herceptin about 2 months ago now. No hormones for me. I’ll get radiotherapy in October, I’m told.
I’m about to go for a long dog walk and tonight I will be experiencing my first gong bath which I am told is deeply relaxing. It sounds amazing. I’ll let you know if I drift out of there in a zen-like state and have a night of vivid and bizarre dreams. I hope so!!
Happy Sunday all,
Salbert
xx
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