Really sorry that you're in this position again. I can imagine its quite a shock. After my BC diagnosis, I thought if it happened again I would be ready but I've had a few cancer scares since and I was worse than when I was first diagnosed with BC. I guess it was because I knew too much. It's a daunting prospect to have to go through it all again. 

I have heard of women getting it twice, within two years of first diagnosis. Unlike you, they did have radiotherapy but it still came back. Cancer is a sneaky *** and no one can predict what will happen after a cancer diagnosis.

it may not be what you think it is. My consultant would call me up whenever benign changes were seen on a mammogram. 

I've got everything crossed for you and please let us know how you get on x

Thanks for replying Magpiemaggie. I completely agree with you that the subsequent scares are more frightening because you know more about what a diagnosis could mean. I was overwhelmed with sadness at being called back for the biopsy and having no idea what they’d seen to require that left my brain filling in the blanks. I’ve now seen the consultant and unfortunately it is another BC. It is indeed a sneaky blighter. Slightly worse as it is invasive this time but they think it is only marginally bigger than last time. A MRI will give us more info to check that is the case. Fortunately they can do another lumpectomy rather than me losing the breast (this made me very happy!). This time they’ll need to take lymph nodes too to check it if it’s reached any of the closest ones which is a bit daunting as I like to exercise a lot so strengths exercises will be off the cards for a while. They’re doing genetic testing too which I’m hoping doesn’t come back positive. I’ll have radiotherapy and then tamoxifen. So much to take in so just going to take it one day at a time. I hope you don’t have any more scares x

Thanks Magpiemaggie. I really struggled emotionally for the couple of weeks pre-surgery. I managed to work to distract myself a little. I’m a couple of weeks post-surgery now. They removed 2 lymph nodes in the end. The first week afterwards I felt really calm because it was good to have that bit done and know that there was nothing else to know right now. I’ve followed their advice to the letter and, because I can’t exercise as I would normally, I’ve tried to head your advice to not let cancer stop me so I’ve just upped my walking to help me avoid lymphodema and make me feel mentally well. I did 40 miles this week just gone and I feel like I’ve done everything I can to recover well. 

However the morning crying has crept back in towards the end of the second week as we lead up to tomorrow’s post-op consultant appointment. There’s so much racing through my head about what they may or may not be able to tell me. I’ve written down lots of bullet points to make sure I ask everything. We’re virtually at 6 weeks since my diagnosis, which is the max they said it would take to get my genetic testing back but I still haven’t heard anything. I’m worrying there is something they’ve found and are saving for tomorrow. When I put that worry down I seem to pick up another one (it being in my lymph nodes; it not being in the nodes but getting high oncotype score, etc, etc). Like you I’m just so keen to put this episode behind me and I’m still struggling to see a light at the end of that tunnel when it will be over and ‘normality’ can resume. I’ll let you know how I get on. X 

Well done in getting through all of that. I'm impressed by the amount of physical activity you have managed.

I was told genetic testing can take months, it depends on the capacity of the laboratory, so I wouldn't be worried that you've not heard back yet. 

Tomorrow is the chance to get all the info you need to move on. As they say Knowledge is Power and it should stop the intrusive thoughts in your head, which in itself can be exhausting.

You have come this far, you can do the next stage

Do come back and let us know how you get on x

Thanks Magpiemaggie  that means a lot. So, hugely relieved to find the invasive cancer has been removed and is NOT in my lymph nodes. I recognise this is very very good news. Sadly, as seems to be the way with cancer, there’s less positive news too. They found 2cm more DCIS around the invasive cancer so my margins aren’t clear which requires more surgery. Also the team has looked back at all my scans they think there’s several small calcifications at the edges of that area. They weren’t concerned about them before as they’re not a cluster but now they’ve found a much bigger patch of DCIS they are uncomfortable leaving them there without knowing what they are. They’ve gone away to consider all the options but mastectomy seems quite likely now as they sound difficult to biopsy and a further lumpectomy would be pretty disfiguring. No news on genetics tests. So more waiting to find out where we go next - feeling a mixture of partial relief and exhaustion x 

Thank you for updating, it's a much clearer picture than before. I also had to have further surgery to clear the margins, much easier than the first. How do you feel about having a mastectomy? Have they offered reconstruction? I had over 7cm of DCIS in my right breast and 6.9cm in left, my surgeon was able to do a reconstruction on both. I went into surgery with C cup and came out with a D cup, don't ask me how as I have never been told how that's even possible

However if mine comes back I will be opting for a double mastectomy. There's only so many times I am willing to go under the knife. x

Honestly, I feel absolutely gutted to have a mastectomy. I really like my breasts and I’ve come to love my body as it is over the last few years. A mastectomy was the thing I was most relieved to avoid after both diagnosis’. I was most shocked as I hadn’t considered it would be reappear as a treatment option on the table. They say chemo is unlikely to be needed but I’m quickly learning to not count my chickens and just take this one consultation at a time because it seems to be an ever evolving picture - who knows what the small calcifications actually are?! I’m in agreement with the consultant, I’m not prepared to wait and see because I don’t want to risk being back here again worrying if it’s in my lymph nodes whilst knowing that I could have taken them out much earlier. So, I guess I’m slowly coming to accept it just needs to be done. Like you, I also don’t feel comfortable repeatedly having lumpectomy surgery. They were clear how tricky my last surgery was and the huge amount of bruising I have this time compared to last time is indicative of that. The consultant mentioned nipple-sparing mastectomy and reconstruction with an implant, which I really hope will be possible as I’m an F cup. I’ve got a lot of questions I hope to get answered next week. Huge admiration for you having gone through treatment on both breasts - that is a lot to get your head around and a lot of simultaneous healing to do. I’m very much hoping my other breast remains ‘unremarkable’ ;-) x

I was the same, last thing I wanted was a mastectomy, for me it was more to do with the length of time in hospital and the down time. A nipple sparing mastectomy sounds okay, my surgeon was going to remove mine and "make me new ones". Honestly, if only it were that simple. Gave surgeon a lecture on why nipples are important to women, especially when it comes to sex. Don't think a lot of surgeons realise that there won't be any sensation after surgery. 

I am in the position just now that my left breast is slightly swollen so back to the breast clinic next week for scans. I am not worried, just so fed up with it. 

Let me know how you get on as I’m also here to support you too. I can entirely empathise with the fed up feeling. It would just have been lovely if both of us had been able to draw a line under our BC experiences first time round and it sucks that neither of us have been able to do that. It helps me to sit with that feeling sometimes before I can move forward and accept it. Take care of yourself ahead of your scan x

It would have been nice to never have any worries again but I know there will be times when something doesn't feel right and needs to be looked at by the breast cancer team. I let you know how I get on and please let me know how you get on too x

Hi RainbowCats,

Please do let us know how you get on. I had lumpectomy/reconstruction 2nd April 2024. It was 4.6cm in the end (they thought it was 3cm from scans). MRI flagged up a smaller lump that was not showing on mammogram or ultrasound so that was also removed. It could have easily been missed if they had not given me an MRI. Mine is HER2 positive. My oncotype score was borderline 20. For my age (46) the threshold is 16. So I am at the point where they have offered me adjuvant chemo before radiotherapy and tamoxifen. I have decided to do it. Anything to try stop it returning. I am curious as to whether you had an MRI at your first diagnosis? If not it could have possibly already been there but too small to see on mammogram x

My swollen breast turned out to be of no concern. The breast team have put it down to the effects of radiotherapy all those years ago. 

My swollen breast turned out to be of no concern. The breast team have put it down to the effects of radiotherapy all those years ago. 

Oh Magpiemaggie I’m soooo pleased to hear this. I’m sure it’s been on your mind on the days leading up to the appointment and you must be really glad they’ve been able to confirm this for you x

Thanks, I was a little worried but happy it's nothing for me to worry about. Only problem now is that my breasts different sizes now and noticeable. I guess that's the price I pay for survival. 

Anyway how are you doing? 

That is frustrating - will they offer you any treatment to help balance them up better? There’s a lot of prices to survival and it’s interesting how many people I keep having to remind that being sad/ angry/ frustrated with the cosmetic/ identity element doesn’t mean I’m not grateful they can treat me to survive. 

TBH I’m not doing great. I feel like I’m constantly being kicked:

- I’ve found out why I got breast cancer, I’ve a BRAC2 gene fault. I’ve not been able to speak to anyone about what that means for me, was just told before the weekend. I think it’d be fair to expect I’ll need a double mastectomy now. It feels like we’ve gone from 0 to 100 miles an hour in a few months.

- The breast I had the lumpectomy on started hurting more over the last couple of days with another wave of bruising appearing and some very tender hard areas. I’d called BCN to discuss this when she told me the genetics result. She said it’s likely to be where the breast tissue was manipulated into place to fill the hole and now scar tissue is forming. But it’s felt gradually worse over last two days whereas the week before I was painkiller free, I’m now back on the paracetamol.

Quite worn down by it all. X

Hi

Wasn't offered anything. Was told surgeons try their best but have to live with it. I will have to get padded bras and remove the padding from the left side. I know it sounds vain but people are looking at my breasts and it's made me feel uncomfortable.

My swollen breast hurts, like you, this has been put down to scar tissue. I did see the scar tissue on the ultrasound and it is thick with around 5 layers of it. I have been advised to rub volterol on it to relieve the pain. 

I am really sorry about your results and angry that you learned about this over the phone. NICE guidelines state that patients must be offered counselling. It is unacceptable that health care professionals treat patients this way.

You have a lot of decisions to make, I don't wish to add to your woes but when I met my consultant prior to my genetic test, she advised that if it comes back positive then I should have my overies removed as well as my breasts as, according to her experience,  women with the gene got ovarian cancer not breast cancer. 

I feel it's something you should raise with your consultant. Do you have a 'Maggies' near you? They offer all sorts of support as do Macmillan. I went to the latter and received massages, reflexology etc, it really helped me to relax and felt better for it. Don't forget to treat yourself, cancer doesn't get a say on how you feel about yourself and how you live your life. Keep doing the things that make you feel good. 

I know how difficult this is and my heart goes out to you x

I don’t think it sounds at all vain at all. It’s absolutely about how confident we feel in our own bodies. If the world wasn’t so judgy about bodies - particularly women’s bodies - maybe we’d not feel half the discomfort. However even then, there’s things we want for ourselves to feel happy and comfortable. Definitely push for more help if you find the padding and volterol are not good enough.  

In the end I went to A&E and all round terrific service. Everyone understood my decision to get it checked sooner rather than later. My bloods show a raised inflammation marker so being treated for a potential infection and like you, having an ultrasound tomorrow. 

It was certainly a bombshell over the phone. Stupidly I consented to be given the results by phone at my diagnosis appointment because I just wasn’t thinking straight. I was just floored as I knew from reading about it that it’d mean increased ovarian and pancreatic cancer risk (higher than the general population yet breast cancer is the highest risk of the 3 types by a long long way so that has to be the first consideration).

The problem with the ovarian op from the basics I know is that they give women HRT to help reduce the big risks to their heart and bones created by the sudden surgical menopause. But as I understand it you can’t have HRT if you’ve had breast cancer. So I feel like I’ll have to have a lot of conversations with the genetics specialist I’ll be referred to now about which risks to take and which not to take. Otherwise, I feel like trying to outrun cancer is going to destroy my lovely body, causing lots of other health problems. Most of all I’d really like all these things are being considered holistically by all the right specialists together with me. 

We’ve got a local cancer centre right near me so I’m going there first for physiotherapy and then I’ll explore what more I want to take advance of. I think most of all I need psychological support because I feel very bleak about what my life has become in the space of two months. Thanks for understanding. X

Obvs I don’t know if I already have ovarian cancer so that should be the next fun set of tests :-(