Decision time - lumpectomy or masectomy?

IsaidsoIsaidso Gold CoastMember Posts: 28
edited January 5 in Newly diagnosed
It's been quite a interesting three weeks or so for me. An inflamed breast, biopsy, inconclusive results, surgical biopsy and today a diagnosis of high grade intaductal carcinoma with prominent atropine change. No family history of breast cancer. Throughout this time, for whatever reason, I anticipated that it would be cancer and decided on a mastectomy. At the appointment today I was given either lumpectomy and radiotherapy or mastectomy as options? I'm not sure what to think or feel? I actually expected an invasive diagnosis (don't ask me why?) so didn't anticipate that I'd have a choice. My next appointment and decision time is 12 January so I have some time...I'm thankful for this forum to speak frankly about it all. I have three children 26,25 and 21 and have spoken to them about the positive prognosis. Cheers Terrie 
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Comments

  • AfraserAfraser MelbourneMember Posts: 923
    Hi Terrie
    Sorry you have joined the club but it's a good place for advice and support. Like you, I had no family history of breast cancer, of any cancer actually. My choice however was a mastectomy or a partial mastectomy. I suspect if a lumpectomy had been an option I would have taken it, but with hindsight I am not so sure.  I think it depends on lots of things. I wasn't attracted to a mangled breast, and didn't think I would have too much trouble about being mono boobed (I chose not to have a reconstruction for a number of good reasons). I wasn't scared of surgery (possibly out of sheer ignorance) but it was straightforward, little pain and I recovered very quickly.  My surgeon recommended a full mastectomy as leaving less risk of missing something. But there are no absolute guarantees. 4 years on I am (cross fingers) well and have no regrets about my choices. And that's probably the most important thing - that you feel comfortable your decision. Best wishes, whatever you decide.
  • primekprimek Broken HillMember Posts: 3,199
    I chose a mastectomy with immediate tissue expanders (I had a bilateral).  I too wasn't keen on having a malformed breast...with no nipple...as that was the unfortunate position...and then needing lots if work on remaining breast. My type of cancer had high recurrence risk so I decided for me this was my best option, especially since it was undetected by mammogram due to breast density. I have however seen great lumoectomy scars with mininal issues on others, so I guess more questions might he needed. In the end I went with my gut feeling and haven't regretted it.
  • Hopes_and_DreamsHopes_and_Dreams Gold CoastMember Posts: 644
    Hi Terrie, so sorry for your diagnosis but as the other ladies have said you will find such lot of information and incredible support here.
    I was diagnosed with a 1.3cm invasive ductal carcinoma in July 16. My surgeon offered me a lumpectomy with radiation or a mastectomy. I am not big breasted and was concerned about clearing the margins with a lumpectomy - he agreed. To be honest at the time I just wanted the cancer out of me and do what I could to avoid any recurrence.  I had a nipple sparing left mastectomy with an immediate silicone implant to match the other side.  Straightforward, minimal pain. I was very fortunate and didn't have any lymph nodes involved.
    I'm very happy with my decision and 5 months on my "new" breast is feeling more and more comfortable and the scarring underneath is less tender. I do still have 3 beautiful blue circles from the lymph node dye tho!
    It's great that you have some time to make your decision Terrie.  We are all happy to share our experiences and choices but in the end just do what you feel is right for you.
    wishing you all the best with your decision and next appointment. Let us know how you go.
    Jane x 

  • Jess_BCNAJess_BCNA BCNAModerator Posts: 476
    Hi Isaidso, I just wanted to also jump in to welcome you to the Online Network, and to let you know that if you need any help online or accessing any additional support and or information, please just let me know. 
  • KarenhappyquilterKarenhappyquilter Member Posts: 190
    Sorry for your bad news.  

    I had a lumpectomy.  I have a T shaped scar on my breast.  It was quite red and raised but is improving now.  I had one night in Hospital for the operation with no drain.  I had morphine for the pain initially but after a few hours stopped that because of nausea.  Panadol was sufficient after a few hours.  I was surprised how little pain I had.  But no operation is pleasant. 

    After radiation the breast which had cancer is noticeably smaller than the unaffected breast.  However with a bra on it's not so noticeable.  I also have some beast lymphedema.  

    I suspect it's a lot easier having a smaller breast than no breast and having to wear a prosthesis.  Less confronting.  

    However, if a mastectomy means no radiation, that would be good too. I found radiation quite tiring.  Not as bad as chemotherapy but still unpleasant once my skin showed the effects of the radiation.  And radiation can cause Lympodema.

    its a tough choice because there are advantages to both approaches.   Good luck with it and your treatment.  Karen 
  • rowdyrowdy Member Posts: 1,160
    Hi and welcome to the site it can be such a hard decision. I had extensive dcis and had 2 lumpectomies and couldn't get clear margins. In the end I had a mastectomy with immediate reconstruction( tramflap). It will be 3 years this Feb lt feels like yesterday The best advice is ask questions, no question is dumb when it is your body
  • Janet PlummerJanet Plummer Member Posts: 64
    I had a small/medium-sized, aggressive, estrogen-positive tumour diagnosed nearly 5 years ago now. I was offered a choice too and I was quite shocked to be honest as I'd always assumed mastectomies were a last resort. My oncologist said that although some women found more peace of mind in having a mastectomy it would not make any difference to my chances of a future recurrence. In a way that made no sense. How can you have more peace of mind when the outcome with a mastectomy was no better? So I opted for the lumpectomy. It was a no-brainer as far as I was concerned. Why undergo such disfiguring surgery if you can choose something less extreme? I gotta say that lopping off boobs unnecessarily seems a little barbaric to me. 

    But everyone's situation is different. I don't mean to imply any criticism of people choosing this option and of course in many cases mastectomies are necessary.  I would not hesitate to have it  done if it were necessary to save my life or even if it would have reduced my chances of recurrence or metastasis. The thing is though that you could have your boob cut off or even both boobs and the cancer can still come back somewhere else in your body. As others have said, there are no guarantees whatever you decide. 

    I am happy with my decision. I try to take care of my health a little more than I used to - more exercise, better diet, less alcohol - and so far so good. I have a small scar on the side of my affected breast which has faded over time, it is slightly smaller than the other one and a little firmer thanks to the radiation. But overall I feel I still look reasonably normal. Good luck with your decision. I hope it all goes as well as possible for you. It's a tough time you're going through but you can get through it and back to a normal life. 
  • Christina 55Christina 55 TasmaniaMember Posts: 54

    Hi Terrie,  I have an Invasive Ductal Carcinoma and DCIS in the same right breast.  Also with no cancer in my family. I was informed that they prefer not to do mastectomies on larger breast women.  I'm a 14D.  So had a lumpectomy, no clear margins, then had a re-excision.  I had early breast cancers.   Started chemo then my next appointment with Surgeon was told I still had no clear margins. (which was a shock after going through everything),  So had to wait until after chemo finished. I have decided to have a bi-lateral mastectomy - no reconstruction.   I could have had another re-excision but after two goes,  I decided to have them removed.   As Rowdy says -- ask questions... My operation is on the 18th January and I did not need to have radiation because I am having the mastectomy..

    Hope everything goes well.   Christina

  • melclaritymelclarity Member Posts: 2,424
    @Isaidso Goodness well it is difficult as everyone certainly is different, so here's my experience. I got DCIS 2011 had lumpectomy, radiation and tamoxifen for 4yrs. It came back inspite of all that in the scar as IDC same as you Stage 2, Grade 3 aggressive, they did another major lumpectomy as my surgeon said it was as good as or equivalent to the Mastectomy. I then had Chemo and now on Arimidex. BUT....because it was a recurrence and my Mum is the only family history I have of BC they now want a Mastectomy, that I am having with Diep flap recon in the coming months, Im am ER+ only and negative to BRCA1&2 Gene. Having said all of this....My Mum had a Mastectomy with no treatment and survived 26yrs and passed from an unrelated Cancer. All you can do is follow your instinct, I was happy with the path I chose in light of how things presented, bit by bit, however now not willing to chance another recurrence so Mastectomy it is, but only one side. Its very personal. Hugs Melinda xo
  • onemargieonemargie queenslandMember Posts: 430
    Hi there terrie like all the girls above its a really personal choice I had L side stage 2a triple neg with no lymph node involvement may last year and could of had either lumpectomy  with radiation and chemo or mastectomy and chemo. I only had little titties so decided on the mastectomy as I thought going through the chemo is enough didn't want the radiation as well. have also taken the Right boob off nov 28 as a preventative. No family history for me either and I'm 44. Read about quite a few women getting a new cancer in their other boob 3 5 or 10 years later and just didn't want to deal with that. Just piece of mind for me. Still no guarantees of course of recurrence somewhere else, but thankfully my risk is low but this decision made me feel better and ive also chosen not to have the reconstruction as I simply don't want any more surgery. I'm totally comfortable with this decision and don't feel less like a woman because of it either. But it is a very personal choice and one you need to be comfortable with. Best of luck whatever decision you make.  Margie :)
  • AfraserAfraser MelbourneMember Posts: 923
    As everyone agrees, lots of variation and choices to be made. I was however interested in Christina 55's comment about larger breasted women. I was a 16E. In spite of losing a breast, I healed quickly, no
    pain and had no problems with arm mobility virtually immediately. My choice of surgeon was pretty well accidental, but I lucked on to a very good one. That's something that's worth checking if you have the time. I did get some background on the oncologist my surgeon referred me to, and that was helpful. The relationship with both, but perhaps particularly your oncologist, will be important so good to get someone you can talk to and whose approach you feel comfortable with, if possible.
  • iserbrowniserbrown Member Posts: 1,652
    Hi there - having to make a choice is very daunting.  Be guided by your medical team and your own instincts.  I didn't have a choice; mastectomy was necessary and I don't regret same.  It is also about the bigger picture in how you will cope without your breast or partial removal.  For me I was happy to have it removed and not too fussed about reconstruction but the surgeon pointed out I was a prime candidate for immediate reconstruction.  It is very personal and I hope you enjoy reading all our experiences as we are all willing you into a decision that you are comfortable with.
    If you're totally cofuddled perhaps speak with a Counsellor as well as.
    Take care
  • ShareShare Member Posts: 217

    Hi @isaidso, so sorry for your diagnosis - interesting that you mentally had "prepared" for the worst but it sill does not prepare you for a bc diagnosis.

    Regardless, welcome to the forum and you have seen so far from the responses that there are so many choices, options etc

    I too had no family history (at the time) and was advised to have a lumpectomy as the needle biopsy came back benign but my surgeon did not like the look on the mammogram or the feel of it.

    Following the lumpectomy it was found to be malignant, so I had to have a partial mastectomy and axillary node clearance - this was back in 2003 and sentinel node biopsy was still in test mode.

    The pathology came back  - 18mm lump with estrogen-positive tumour. As there were not clear margins, I had to go back in for surgery a third time to take more breast tissue.

    At the time, I did ask my surgeon if I would be better off with having a mastectomy. He told me I was young - 37 - and the chances of recurrence after having chemo and then radiotherapy is very small. If only I had been more forthright.

    In 2006, my Mum was diagnosed with breast cancer (who would have thought !).

    Four years later in 2007, another lump was found in the same breast - after yearly check-ups and on tamoxifen - a mastectomy was done.

    Following years of same check-ups and adjuvant therapy (tamoxifen, arimedex, femara) I now have secondary breast cancer in my bones.

    In hindsight, sometimes fear has a huge bearing on our decisions. I know that we sometimes have self-doubt regarding some of our decisions but @Afraser ;"mangled breasts, lop-sided boobs" and @primek ;"no nipples"  really are not helpful comments. I for one would opt for either of these in a flash if I was spared secondary breast cancer.    

    Armed with knowledge and your intuition, I am sure you will make the right decision for you Terri.

    My very best wishes to you in what ever decision you go with.

    Regards

    Sheryl xx

  • socodasocoda LeumeahMember Posts: 1,459
    Hi Terrie, Welcome to the forum. I think the thing to remember is we each make our decisions based on multiple factors that are occurring at the time of diagnosis and the options that our surgeons present to us and these are very individual reasons. I don't believe that anyone just goes into this kind of surgery willy nilly without having a feeling for what is best for them.  You will do your own research, make your own judgements, weigh the pros and cons of each thing and then make a decision that is right for you. Believe it nor not your next 6 days are going to be ruled by this decision (unless of course you have already decided. Wishing you all the best with this. Please if you do need to ask questions to assist you everyone on the forum has their own personal experience and no one decision is right or wrong. Big hugs Xx Cath
  • MiraMira I live in my computer .... Member Posts: 282
    Hi Terrie, I had a 1.2cm invasive tumour.  I had a lumpectomy and the surgeon offered that she could do the incision around the nipple so that I wouldn't have a big scar.  I opted for that and have no regrets.  I only have small boobs and with clothes on you cant even tell I had anything done.  Naked, the colour around my nipple is a bit wonky and theres a small dent (if you really look hard) but that and a small scar under my arm are the only signs.  Its been 2 years now and I have no regrets.
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