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Single or double mastectomy?

JayMBJayMB PerthMember Posts: 5
edited May 2021 in Newly diagnosed
On the 27th of March this year I was manning a stand at the Every Woman Expo. Our stand was right next to the breast screen truck. I’m 46 years old, no family history and had been told in a health assessment I didn’t need to start having mammos until I was 50. I work with nurses who were there and a couple of us decided to go and check it out. Had it done that day feeling quite proud that I was being proactive about my health etc. Shock horror, a week and half later I got a call to come in to the next available appointment at the breast clinic. Another mammo, ultrasound, core biopsy and a day later I was given the news we all have. Grade 2, invasive breast cancer but it looked small, found early and highly treatable. I still just think, how bloody lucky am I? 
2 weeks later, I’ve seen the surgeon and booked in for lumpectomy and snb. That was 3 weeks ago. Went for my follow up with pathology results and the tumour was twice the size, a second they couldn’t see and widespread DCIS also not previously visible. MRI confirmed. 
Now I’ve been told it’s single mastectomy and losing the nipple. It’s been a whirlwind 2 months! 
The other breast was clear but did show subtle areas of change? 
I’m having the DIEP reconstruction, get a free tummy tuck silver linings 😏, but all I can think of is, I never want to go through this again, don’t Want to take any risks and would rather just get the other side taken off at same time. The surgeon said it’s not necessary but that was just the initial conversation..
im going through the public system so is it even a possibility to have it removed at same time by choice? 
How have others felt after making these decisions? 



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Comments

  • Keeping_positive1Keeping_positive1 Member Posts: 397
    So sorry to hear of your complete surprise diagnosis!  It is a shock for sure.  My situation was that I needed a bilateral lumpectomy, so I went with the recommendation of the breast surgery.  Mostly I am happy with that decision.  I would never had wanted to be lopsided as these days I have larger breasts, so if only one breast needed to be removed I would have pushed very, very hard to both breasts removed.  I think it is possible through the public system, not sure though!  Perhaps another forum member knows?

    Sometimes tossing ideas around with other women here can help you clarify what will best suit you.  It can be an isolating time, so if you need to discuss with others hop on here any time, and mostly someone will come on with their two cents worth.

    You have had a long wait to get to the surgery stage, but that can be the case in the public system, unfortunately.  Sorry to hear one tumor is twice the size. I also had a long wait, and I am pretty sure you will be OK, as was I.

    Best wishes and you are in good company here on the forum.  Just sorry you find yourself here.  xx


  • FLCloverFLClover Sydney Member Posts: 1,445
    Hello 🙂. Also sorry to see you here, just like all of us. 
    I was also diagnosed with multifocal bca, with 2 lumps in my right breast, and another in my left. Post op pathology showed a third tiny lump was in between the two in rightie, as well as DCIS in both. Lucky I had a double mastectomy and it was all cleared. I kept both nipples initially and got expanders, but later left nipple went too due to DCIS. I think you should insist on a double if you feel safer that way. Lots of women have had both reconstructed in the same surgery. It makes more sense. Lots of lumps can’t be seen in any imaging tests, but they are there. And you had multiple in one breast, just like me, so it might be safer to remove both and have peace of mind. 
  • JayMBJayMB PerthMember Posts: 5
    Thank you so much for your comments. It is such a relief, albeit sad for each of us, to be able to talk about it. 
    I feel like it’s been a whirlwind, all happened so quickly. The first surgery happened very quickly. I’m very lucky working in healthcare myself and I’m being very well looked after fir which I am extremely grateful. It’s this next, major round that’s going to take a while and drive me crazy! I’ve been told it’ll be around 2 months by the time I’ve been referred back to the hospital and seen surgeon and oncologist and plastic surgeon. 
    I have pretty small breasts, worried about being lopsided as well and there’s a part of me that is still a bit vain and thinks, if I have to have this damn surgery, can give me a fuller breasts? Can I choose to go private and pay for it myself? 
    So many questions 😆 ive been through so much in such a short time yet I feel it’s only the beginning. 
  • Julez1958Julez1958 SydneyMember Posts: 402
    Hi there
    this is a question many women diagnosed with BC face.
    I was diagnosed with lobular cancer in my left breast which was not shown in my regular mammogram , I discovered it as a lump .
    It turned out to be quite large so I went from a discussion of a lumpectomy to a mastectomy with insertion of tissue expander for DIEP reconstruction down the track in a very short time.
    After the mastectomy and radiation my breast surgeon said “ what about the other breast”?
    I said “ what about it”?
    And he said that with lobular cancer there was more likelihood of getting it in the other breast but that the decision was a very personal one and he would support whatever I decided.
    in the end I have decided to have the other breast mastectomy and double DIEP reconstruction later this year.
    A big factor for me was that the original cancer never showed up on screening so I would have that in the back of my mind every year and also if I got it in the other breast I might not be so lucky next time and might have to have chemo ( I escaped chemo this time round).
    but it’s an extremely personal decision and whatever you decide is ok.
    it is hard when everything is moving so fast.
    obe other thing is that if you have the DIEP for one breast only and then down the track you get BC in the other breast and need a mastectomy/ reconstruction you can’t do DIEP again , although there is the possibility of getting fat from another body part like the bottom.
  • Julez1958Julez1958 SydneyMember Posts: 402

    One other thing is to join the breast reconstruction private group on here there are lots of useful personal stories and photos on there.
  • FLCloverFLClover Sydney Member Posts: 1,445
    Yes, @JayMB, it’s exactly like that. So much happening in such a short time, and there’s sooo much more yet to go through! This is accurate unfortunately. And having a million questions is perfectly normal, cos we are thrown into smth so unfamiliar and scary, and expected to move at such a fast pace. Of course we want to know what’s happening and our options! 
    Im really glad you’re being well looked after medically, because thats extremely important too for your mental and emotional health in all this. 
    I think that not wanting to be lopsided is perfectly natural, especially since it could also affect your posture and cause pain in other areas that would be overcompensating. And also, it’s not vain at all for wanting to have fuller breasts. It’s the least we can get for having to go through all this turmoil and trauma!! We deserve a medal, let alone fuller breasts 💪🏻🍈🍈😁. 
    It is possible to go private, just make sure you receive a few quotes as some surgeons overcharge. Do your research well. I don’t have private health cover so I paid my first surgeon and anaesthetist privately for my DMX. I got the money from my super. I went through the hospital as a public patient as it was a possibility. 
    Good luck, and ask away if you need more help 💕
  • AfraserAfraser MelbourneMember Posts: 3,889
    It’s a very personal decision - no right or wrong answers. I had no strong reasons to lose a second breast, have large breasts and a properly fitted prosthesis ensures that I am balanced and have no spinal problems. 
  • StrongCoffeeStrongCoffee Member Posts: 112
    I firstly wanted to say Hi as I am 45 and received my surprise diagnosis earlier this year as well. I went in for a mamo and ultrasound due to what appeared to be some mastitis near my right nipple. That turned out to be a cyst, of which many were found (explains my 'lumpy' breasts), however microcalcifications were also picked up in a different area on that breast. No lump was palpable and nothing showed on the ultrasound. A stereotactic biopsy revealed IDC around the patch of DCIS. Thankfully my surgeon got me to have an MRI at that point to get a better idea of the size and spread before we went any further discussing surgery options.

    Long story short, it showed as just the 1 area, other breast clear, lymph nodes not enlarged. Due to anxiety and wanting to avoid radiotherapy, I had a skin sparing mastectomy on that side with immediate implant reconstruction and sentinel node biopsy. Nodes came back clear and cancer is definitely just isolated to that one area.

    Even then, probably due to anxiety, I was still tempted to have a DMX. In your shoes, with changes visible in the other breast, *I* would have a double. But that's me, my anxiety, wanting to have as few surgeries and recoveries as possible, etc. Everyone is different. 

    Practically speaking, I'm glad I had just the one side done and went with an implant. My kids are 7 and 13, I work full time on my feet (primary teacher) and my husband works long hours. So mobility and recovery are big factors for me. If my kids were older, I would have probably been ok having both breasts and abdomen surgery recovery, as they would be less dependent on my labour at home (especially the young one). I may go the option of DMX/flesh recon once my implant is due for replacing.

    Do joint the choosing reconstruction group. It was such a great help in deciding between my choices!!! I've posted in there and will put some new photos in today (5 1/2 weeks post surgery).

    Also, I sped up the public hospital process by doing some appointments privately. It's not made it hugely more expensive (around $50-60 out of pocket per specialist appointment). Many surgeons practise in both public and private hospitals. I saw my surgeon privately and he could book me in to the public hospital (he didn't end up being the one who did the surgery). He then also referred me to the PS who saw me within days and added her part of the surgery onto the booking. I still had to wait a month, due to the hospital needing to coordinate 2 surgeons and a longer surgery. But the whole booking/consulting part was faster than the hospital system. So if you can afford this option, you could call your hospital to get the details of any of their breast surgeons who also consul privately. 
  • JwrennJwrenn Mornington PeninsulaMember Posts: 127
    My cousin opted for a double mastectomy with implants and her daughter talked her into going up a size as she was quite small so anything’s possible. 
  • ZoffielZoffiel Regional VictoriaMember Posts: 3,309
    Hi @JayMB
    Things have changed a great deal since my first diagnosis in 2006. At that time, there was a definite reluctance (particularly in regional areas) to offer a DMX. I had to travel to Melbourne to find a surgeon who was willing to do what I wanted.

    I've never regretted getting rid of the treacherous 'good' boob. It most certainly wasn't my friend as we all discovered when it finally made its way to the lab. Even if it had been deemed to be be nonthreatening, I would never have been able to relax while it was sitting there, in plain sight, potentially cooking up a storm.

    Reconstructive surgery has changed a lot since then too. I sometimes wonder if it's gone a little too far when it comes to offering elaborate solutions when some of us would just like a set of tits under our shirts and are not too worried about whether they look and feel like 'real' ones. The overall impact on our bodies while striving to look 'natural' may also be sidelined to a degree. These are really significant operations that can have serious complications. Or not. Depending on factors we can't control.

    I'm sure that there are some people who regret getting rid of both, but I've never met anyone who has told me they wished they had made another choice when that was what they decided to do. It all depends on your circumstances and the advice you have been given.

    It sounds like there has been a degree of synchronicity about your diagnosis. I think you should follow your heart from now on. Which is no way a scientific approach. Mxx 


  • JayMBJayMB PerthMember Posts: 5
    Thank you so much for your comments and advice. 
    I have joined the reconstruction group so I’ll go and have a look there too. 
    @FLClover and @StrongCoffee great advice seeing the surgeon privately. I was sure if I’d be able to do that while I’m going through the public system.

    The main thing that is confusing me is the specialists I know think I’m being silly for even  thinking of a double and that it’s absolutely not necessary? I guess I can only wait until I see the next lot of specialists and get more advice. I don’t even know yet if I’ll need chemo or not!  

    Just so grateful to be speaking to others who have or still are going through it. But that I want any of us to be going through this... 😊
  • PruPru Member Posts: 7
    Hi @JayMB

    sorry to hear your news - there's so much to take in and decide so quickly.  I was diagnosed  last year - like you not everything was visible and after initial lumpectomy & auxiliary clearance, I had to return for a second wide excision a week later to try and get a margin.  That was also unsuccessful so onto a mastectomy.  My surgeon supported my choice to remove both breasts as completely reasonable even though there was no changes to the right.  She was very clear that even though there was no scientific evidence for the removal of the second breast many women choose it and she could understand why and was supportive of that.   After six moths of chemo I had bilateral mastectomy in December 2020.  I have no regrets and it is relieving that I won't have to have mammograms or breast surgeries etc going forward.  

    Like you I was offered and intended to go with immediate DIEP flap reconstruction but after enquiring about complication/surgical return rates I decided against it.  I share this because I had post surgical complications from lumpectomies which were really tough to deal with and required further hospitalisation, medication and massive impact on my family as well as myself. I was the outlier in all of that so not at all likely in your situation but it left me feeling that did not want to have more surgery (s).   I found this website about aesthetic flat closure helpful in feeling at peace with my decision for double mastectomy with no recon.  https://notputtingonashirt.org  It's nearly six months from surgery now and I'm comfortable with my flat, no nipple chest.  
    Best of luck with everything.  When I was trying to decide what to do my best friend said to me 'there's no wrong decision' and that was so helpful.  They are just decisions about what feels best to you at the time - you really can't get it wrong.  Warm wishes, Pru
  • PruPru Member Posts: 7
    Also just wanted to add your comment about 'specialists thinking you're silly' really resonated with me.  A big part of my journey has been about coming to the realisation that I don't need approval about my concerns!  If it matters to you, it matters to you and it is disingenuous for the specialists  to pretend that these are not valid options and concerns when they are actually so obvious and instinctual to this situation!!!!
  • Keeping_positive1Keeping_positive1 Member Posts: 397
    Each year I have my mammogram and ultrasound I really wonder why I didn't get both my breasts removed!  
    Some don't have that same feeling, but some certainly do!  The fear of a recurrence in the breasts never leaves me! 

  • LocksleyLocksley Macedon Ranges, VictoriaMember Posts: 796
    @Keeping_positive1 I had a single mastectomy on advice from breast surgeon after lumpectomy showed it was much uglier than first thought in May 2020.  I was in shock when first told and it wasn't suggested or talked about having both removed. Appointments moved quickly.  I've not long had first mammogram after 12 months of treatment and sometimes it has crossed my mind why I didn't just have other boob off.  I wonder if in time I do want to have removed I can or if there is a time limit on these decisions.  I am in the public system. 
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