Finished TCHP (six rounds) chemo 12 days ago and had my completion MRI a couple of days ago. Now very nervously waiting for results and to book surgery (get them on Wednesday morning).
Had an MRI mid-way through chemo that showed the total extent of my multifocal tumours (largest one was 1.6cm at diagnosis, lots of other small ones and some axillary node involvement) had shrunk by 49%. My onco said the involved lymphs were also ‘almost all gone’.
My boob, which before I started treatment was VERY hard, inverted nipple etc, now just feels like a normal, squidgy boob (nipple normal). The only thing I feel now are random ‘aches’ in the affected boob, on and off.
In summary, I know the chemo has done SOMETHING, but am still fricking terrified. Hearing positive stories a) makes me happy, and b) makes me feel like this will one day just be a horrible nightmare that I once lived through.
I had surgery first then chemo/herceptin but many in here and on the monthly chemo groups have a CPR (complete pathology response) to the treatment and then surgery removes the residual tissue.
I’m sure someone else on here will let you know some positive stories.
Hi this is real
Thank you so much for replying to me.
When I got my pathology results I explained to everyone that the tumour has been removed of course but I didn’t really go into detail about the next phase and I was getting lots of congratulations whereas I knew the Kadcyla was coming. My mum struggles with it all mentally so it was really to protect her.
Thank you for sharing your experience which sounds as positive as it could be. As you say taking it slowly will be a sensible thing to do. I’m quite a few weeks post surgery now and feeling much stronger. I had sepsis following the mastectomy at the beginning of December. Lots of love to you. How many rounds of kadcyla do you have left ? Xxx
Thanks Sal I’m so pleased to have found this thread and some buddies. I already feel better knowing that I have a place where I can share my experience with others who will understand. Lots of love x
Does anyone have experience or info if it’s better or safer to start with expander vs permanent implant. My team suggested permanent implant directly. What’s your experience?
They told me that radiotherapy can make the implant go wonky etc so i opted to stay flat for now. It might be worth speaking to your breast care nurse or researching more info x
Hi, I am seeing my surgeon tomorrow for my plans. I finished chemo 7 Jan and she said it would be before 7 Feb.
I am having immediate reconstruction but both my plastic surgeon and breast surgeon have said to have implants and DIEP later xx
@pinklady3 I’ve only had 4 so another 10 to go still. I had a long gap when I had radiotherapy and some complications when I had my port fitted.
Sorry to hear about your sepsis experience. It must’ve been terrifying for you. But well done for soldiering on. Together we all can keep supporting each other and we can and will get through this!
Best of luck x
I have just had a lovely relaxing weekend and even dropped in at the local pub on Saturday evening as the hubster was there already. I had two wine and sodas and had to leave as I was, frankly, drunk! I went home and sang for almost 2 hours until he returned home. It was great! (Poor neighbours.)
@jeml I hope you had a good night out. Best thing you could have done. You have had the best result you could possibly have had and remember, our statistics are excellent. You’ve had a good wash through your whole system with all that lovely chemo (yes, I know there’s nothing lovely about the process but I’m thinking of the end result) and you’ve eradicated any chance of it popping up in either boob again. You are in a great position. You are Jem 2.0. Pro Version.
@jessybessy LOTS of positive stories here. Please let us know re your results on Wednesday. There is no reason that you shouldn’t be one of the vast majority of people for whom this becomes a memory. Yes, it’s not a pleasant memory and we go through a lot but I believe we all grow through it and become stronger women with a whole different perspective on life. We really are warriors; I get that now. It certainly sounds to me like you are just like the rest of us and you will get through it. Even if you have some residual cancer, then you’ll do the Kadcyla and you’ll STILL come out the other side. You can do this. You ARE doing this. Hang in there and stick with us. It’s great that you are at a similar point to @musestad. You should definitely be buddies. And yes, I love that sentiment, let’s stay brave together. To answer your question @musestad, I was told to have a tissue expander as they needed to stretch the skin again after quite a bit was taken along with my nipple. Maybe they don’t need to expand your tissue quite so much? Radiotherapy can affect the outcome but I was very lucky and it didn’t, so I’ve been able to expand to match the size of my remaining real boob.
@galdiolus What did your surgeon say today? What are the plans?
@pinklady3 Sepsis absolutely must have been a terrifying experience and you’ve reminded me of something my therapist said which was to give yourself a pat on the back for doing what you need to help yourself fight back. By coming on this forum we are all finding moral support and looking out for our own mental well being. By coming together and sharing stories we can feel strengthened by the good news and supported during the bad. You lot rock!
Just wondering whether anyone has had a skin cancer scare at all?
I have been waiting for a dermatology appointment since last January and was then diagnosed with breast cancer in May and life obviously turned upside down. I then got my dermatology appt through in December for earlier this month. I went to it and was told that a mole on my back looks suspicious and they wanted to remove it urgently. I’ve had it removed today but am feeling so emotional and crappy. I had amazing results from the breast cancer surgery last week but feel like I can’t breathe yet because of this now hanging over me. Results will be 6-8 weeks and I’m so worried they’re going to say I have skin cancer as well - I just can’t escape the feeling that it’s going to be bad news. I just want to get my life back on track. I’m also feeling rubbish because I have cording after the lymph node removal and have been working hard with physiotherapist to help it loosen with stretches and exercises, which the dermatologist has now said I can’t do for 2 weeks or the stitches on my back could burst. Just had enough now
Sorry for being negative and deflated, but I know this is a safe space with lots of lovely understanding people who know just what to say xx
Hi all.
Hoping i can join. Ive just come from November chemo starters. Ive had surgery and just finished 12 weekly paclitaxel and i am her+ er+ and looking for advice and support.
Hi @rrey yes I had a scare too. It was actually something I had on my arm that I went to GP for in the first place, I just happened to mention the lump in my armpit at the same time.
In the end my arm was bcc, luckily they got it all at the first appointment (offered biopsy or just to remove all, so I said get rid). I waited about 10 weeks over Christmas for the results and yes it was horrible, like you my mind was going everywhere - especially as I had got my unexpected BC diagnosis too.
If I hadn’t have gone to get it checked I still wouldn’t know about the BC. So I suppose the moral of the story is if you know about it, you can treat it. I’m sorry you are in this situation, it sounds like you’ve really through it recently and it is totally understandable for you to be having a massive wobble at the moment, especially with the fact you can’t do those exercises at the moment, but you are obviously a really strong woman.
I do hope that you get the positive outcome you are hoping for, and you can healing soon. x
@salbert thanks for your message. The surgeon has suggested expander implant as there is a chance I need radiotherapy.
It’s all very confusing as they haven’t been able to measure the tumour since my first scan after I started chemo. But as I have DCIS (microcalcifications) they don’t know what is and isn’t cancer now so can’t give me any more answers until after my mastectomy.
Last night wasn’t good as I got into my head about it in the small hours. I hate the uncertainty and just wanted them to say I had a PCR even though I knew they couldn’t because of the microcalcifications.
I really wanted the DIEP and both my surgeon and plastic surgeon cautioned against this and I hadn’t researched the expander as I wrongly thought they used those for delayed reconstruction.
I was pleased to see your comment about expander which fills me with hope as you worry about the failure etc which inevitably my surgeon talked me through yesterday
Any more tips gratefully received. I assume your implant reconstruction was before your radiotherapy
On a plus note having my surgery either 31 Jan or 8 Feb so not too long to wait!
Also did you come home same day?
Sorry for the questions. I bet your glad you asked now xx
Hi @galdiolus im alittle behind you and about to have round5 chemo tmw and my surgery will be in March.
I too have DCIS and have had the same worries as you as I’ve had my mid scan which showed reduction in size but then yesterday my onc was like we won’t know anything until after it’s out at surgery. Have you had a scan after all your chemo treatments?
My onc also said that my phesgo will stop with my six chemo cycle and nothing will happen until after they have the results of surgery back. Is that the same for you? I feel angsty about this as surely it’s best to keep the tx going??
Anyway not long until your surgery. I hope you are getting some rest before that date xxx
To answer your question 