predicted text have used them for swimming knockers not knickers 
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suzie19, at first I was freaked out about having cancer again, then I was coming to grips with it and was pointed toward the Stage IV scare. Now I am back to what may just be a local recurrence, but all these emotions are throwing me left and right. Glad you lungs turned up with no change. I am in the United States in Arizona. I’ve noticed many of the ladies on this site are from England. I signed up because reddit and my old bco.org weren’t as much a good fit for discussions.
I have an appointment with my surgeon in a couple of weeks and will begin to talk more about reconstruction. When I first met with him, after my recent dx, I really thought he could just take out this new mass and send me on my way. I suppose I was being a bit native. I’ve since researched a bit and have a few ideas of what I would like, but I have to see if these things are possible. I am bummed as I have always liked my breasts. Even after my lumpectomy 13 years ago, my doctor did such a nice job I couldn’t even see the scar. The mass was almost under my arm so he was able to take it out without any need of a plastic surgeon. Anyway, I truly understand feeling twitchy about the 1st mammo. Scananxiety is a very real thing. Be well. 
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Just saw your message. Had mastectomy with no reconstruction. Letrazole for 5 yrs
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Hi Rocky’s
I’ve read about your recurrence and I’m glad your latest results where more promising than your initial fears.
I’m waiting for rads, and started Tamoxifen for er+ her2- no chemo for my primary cancer.
I absolutely agree with your comment about recurrence rates and how the Drs seem to keep that information tucked away. I’ve also seen some of your other posts which seem to have similar thoughts to me.
They always quote 5 year stats, which for er+ is generally quite good, but they don’t extend to 10 years when it is more likely to increase.
I work with statistics and have a natural curiosity to delve into these things, and I can say without shame, last 2 weeks have been very stressful and challenging. The reason……I begged my oncologist for chemo, even thou it was minimal benefit. Why? I read the stats and I was also told I had cancer cells in blood vessels (potential to spread). I also know Tamoxifen, is a good inhibitor while taking it but it doesn’t kill cancer cells.
My chance of recurrence is low within 5 years, but I sit here now thinking rads only covers one area, and tamoxifen just delays growth. It’s frustrating and I can not switch off about it.
I sincerely hope you get some good results from your new treatment. I hope you don’t have too many side effects, but if you do, try persevere. Thinking of you x
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Hi, Thanks for the kind words. You didn’t mention how old you were, but here in the United States it seems we have a different protocol than the UK. The only reason for chemo would be for large, fast growing cancer or positive lymph nodes. If these don’t apply to you I would be jumping for joy. Chemo kills off all our cells not just breast cancer and as with me it may not have killed them all. Unfortunately they say cells can hide and some can grow again. I only wish we knew why it comes back, but I’m sure they will one day.
If you are taking Tamoxifen you really are doing what you can. They are now saying that after 5 years you may be able to continue or you can switch to an AI like Arimidex. That can get you some protection for another 10 years and by that time they may even have better meds or treatments. I’ve read that breast cancer is a chronic disease like diabetes, high blood pressure, etc. As more time passes you will stop thinking about cancer. Heck, I hadn’t thought about it in years and years. Once in a while if the topic came up I’d think oh ya… I had that. Now of course being in the thick of things it is every day.
My tests all came back negative for a metastasis and the more scary recent biopsy came back clean. I’m coming up to 3 months since dx. After finding out my original surgeon isn’t a specialist and the 2nd opinion person was a waste of time and energy, I finally have a breast surgeon. She’s personable, knows here stuff and has referred me to 2 plastic surgeons. I already have an appointment with one for next week so I should have surgery before the end of the year. That will be the next big step. The silver lining is that all these months of tests/waiting helped me process. I have decided to have a DMX. No more mammos, no concerns for the other breast firing up and symmetry for the reconstruction.
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I’ve just turned 50. I also have PCOS which is known to produce higher levels of estrogen, even after menopause. I’m going to try Zoladex, which is temporary suppression of ovaries and I will most likely have them removed at a later date.
It sounds like you gave a busy schedule ahead, hope all goes well. Maybe you can post an update when you find a suitable time, I’m sure it will provide some positivity and inspiration for many others.
Best wishes x
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I’m in my first round of treatment for Invasive Lobular BC. I’ve had a therapeutic mammillary and nodes removed and am waiting for radiotherapy.
My oncotype test showed low chance of recurrence within next 9 years but there was no mention of long term (and I stupidly didn’t ask with so much else going on) but I’ve read ILC can be dormant for 10 to 15 years and that hormone +ve cancers as you say are more likely to come back as time progresses and more likely to be a distant cancer.
Everyone I know assumes the longer you are clear the better your chances of it not returning - I’m really struggling to get my head around the fact it seems it may come back.
I’m usually quite a logical person - like stats etc. (from reputable sites) but I’m going down a rabbit hole with this one! Finding all sorts of horrendous stats and anxiety levels are high.
I’m 56 but feel I have quite a lot more life to live. How do you get your head around it?!
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The way I get my head around it is that I look for the silver linings. I had 13 years of good health. My breasts and body seemed fine during that time and the fact is I was younger and although I care about my physical appearance now, I would have flipped out with the decision for a DMX back then. The cancer never scared me back in 2011 and for some reason doesn’t scare me that much now. What scares me is the cutting into my body, but again on the brighter note, they will be able to move abdomen fat and tissue into my chest to form new healthy breasts. Doing DIEP wasn’t as common years ago so I am fortunate to have one of the best doctors in my state to do this work.
I sort of stopped with looking at all the numbers a few months ago and came to the realization that my odds went up with ER+ and that isn’t so uncommon and so here I am. See how easy it is to turn each shitty thought around? Of course after my surgery next month I may be thinking differently, but I do choose to lean toward the positive in hopes of the best outcomes.
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I’m just adding something on here - my daughter works in this department and shared this good news with me today:
So good news that Breast Cancer Now is funding this research. Won’t help anyone going through this at the moment, but hoping that there will be better understanding in future of why these cancers reappear years later. All the very best to everyone going through this at the moment.
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Hello everyone, do you mind if I join you for a handhold? Like you I never thought I’d be back here again, but crash-bang-wallop after 16.5 years here I am.
Had 60mm ER+ in 2008 resulting in mastectomy, chemo, radio then 10 years on Tamoxifen. Thought I was home and dry, exited the annual mammos 6 years ago, first 3 yearly one in 2022 was clear.
Fast forward to this month and have just had recall from second 3 yearly on 4 April.
5mm suspicious area in remaining boob (“ right tit” 
), biopsies were taken on Thursday with now a long 4 week wait to get results.
Have reassured myself so far that this one is tiny compared to the last time. Radiologist was very reassuring also but obvs I won’t know more until next month.
Waiting for the recall appointment was the worst time. I do actually feel better now I know there’s something there and the literal size of it but am also having the occasional wobble.
So, here I am back in the club no one wants to be in but I’m very grateful you’re all here. Even if no one reads this it’s good just to see it in black and white and get it off my chest (I’m quite the expert in dark humour BTW, hope I don’t offend anyone, it’s just my way of coping x)
Bella x
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Hi Bella. Sorry that you’re back here. Just wanted to send you love and good luck for whatever the outcome and treatment. Sounds like whatever it is is small and shows the worth of keeping up with the screenings. The wait is literal hell though, I always assumed that you were told anything bad right away but I had a similar wait for my own diagnosis. The negative…you are back here and have the anxiety that goes with the waiting game. The positives….you’ve smashed this before so will do it again. Xx
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Thank you, that’s just what I needed to hear x
Good luck Bella sending you a virtual hug I’ll be keeping my fingers crossed for you 
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Thank you x
Hi, I’m so sorry you are back here. I haven’t been on this site for a bit and I just saw your post. I hope your biopsy was negative, a fluke, etc. I can’t imagine having to wait 4 weeks. My fingers are crossed for you.
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Thank-you rockym. Unfortunately it’s positive, same type as before, Stage 2 invasive ductal, ER+ PR+ HER2-, but it is small at 5mm.
I was offered a 2nd mastectomy by my surgeon but will keep that as fallback if needed. I’ve opted for lumpectomy and SNB which is booked for 3 June. Histology will dictate further treatment.
Is anyone in the same position?
Bella x
I hope everything goes well for you this coming week. I have a pre-op appointment on June 2nd to prepare for my phase 2 of my DIEP procedure. Because my recurrence was local and in the same breast I decided to have a DMX this time. I was very scared of it coming back a third time as I know others who had been in this situation. The reconstruction with the plastic surgeon was a procedure called DIEP where they use the abdominal skin and tissue to create new breasts. Mine was skin sparring and nipple sparring so my breasts look fairly similar to what they were. The phase 2 portion is when the doctor fixes any aesthetics such as shape or scaring. I’m a bit scared going back, but I do trust my doctor and hopefully after this, I can move on.
I will say that I also choose DMX because the standard of care at this point is no more screenings. No mammos, MRIs, ultrasounds, etc. They say since there is no breast tissue (or very minimal) we just feel our own chests and be aware of our bodies. I know that sounds scary to some, but to me it was exactly what I needed. For the past bunches of years I became a nervous wreak before my mammos and then often I had to come back for a diagnostic mammo and it just seemed way too stressful.
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All the best to you for next week also
Bella x
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