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Unsure about surgery choice

SimoSimo Member Posts: 7
Hello,
newbie here. Diagnosed 3 days ago with G2 estr+, prog+ Her1+. 
Right breast, two lumps (around 1,5 cm each, very close togheter ), one nipple adjacent.
I am not a small breast one but i wouldn't define it as big. 
I discussed the procedure with the surgeon who explained that a a lumpectomy nipple/areola sparing can be performed in my case, being aware that having not a big breast could mean not clear margins (not enough tissue to be taken off) so a second surgery (masectomy) is amogthe possibilities.
I agreed with him who considered, I suppose, age, generale health situation, BC type. But now I am panicking, reading that multifocal BC like mine are usually treated with mastectomy and in some cases with pre op chemo.
I know that everyone's case id different and no comparison can be possible but I am really confused and can barely function these last days.
The procedure has been scheduled for next Friday but I'm not sure I will be still a "normal" person by that time.
Anyone's experiencing/experienced same situation?
Thank you
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Comments

  • AllyJayAllyJay Member Posts: 629
    I was diagnosed in September 2016 with stage 3, grade three triple positive multifocal IDC in the left breast and what was referred to as "abnormal geography" on the right side. I also had a known lymph node affected on the left. I was unable to have radiotherapy due to pre existing medical conditions and had chemo before a bilateral mastectomy...my choice for both to go.I am now NAD (no evidence of disease) and will be on Letrozole for at least ten years. Each of us is different, but in my case the left had to go anyhow. If I had been given a choice between lumpectomy and the full monty, I would have made the same chioce. The idea of a surgeon cutting around a tumour, and then later pathology showing that clear margins were not obtained gives me the heeby jeebies. As a lay person, I would be scared that all that bleeding into the rest of the area, which still has cancer in it and the swishing about to my entire body, would frighten me. I am sure a completely unfounded fear, but that's me.
  • iserbrowniserbrown Regional VictoriaMember Posts: 4,117
    Googling is not very wise!
    We've all been diagnosed with Breast Cancer but from thereon it becomes individual. 
    This link will allow  you to gain a better understanding of your type and a further link within about pathology.  The pathology report after surgery gives a greater understanding.

    https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/

    Take care 
  • SimoSimo Member Posts: 7
    AllyJay said:
    I was diagnosed in September 2016 with stage 3, grade three triple positive multifocal IDC in the left breast and what was referred to as "abnormal geography" on the right side. I also had a known lymph node affected on the left. I was unable to have radiotherapy due to pre existing medical conditions and had chemo before a bilateral mastectomy...my choice for both to go.I am now NAD (no evidence of disease) and will be on Letrozole for at least ten years. Each of us is different, but in my case the left had to go anyhow. If I had been given a choice between lumpectomy and the full monty, I would have made the same chioce. The idea of a surgeon cutting around a tumour, and then later pathology showing that clear margins were not obtained gives me the heeby jeebies. As a lay person, I would be scared that all that bleeding into the rest of the area, which still has cancer in it and the swishing about to my entire body, would frighten me. I am sure a completely unfounded fear, but that's me.




    Thank you for sharing your experience, Ally.
    My situation looks a bit different and, even if I am like you, always thinking to the worst case scenario, always figuring what's the next bad thing to deal with. 
    That's why I posted here and that's why, maybe, I should calm down, stop googling and try to do one step at the time.


  • SimoSimo Member Posts: 7
    iserbrown said:
    Googling is not very wise!
    We've all been diagnosed with Breast Cancer but from thereon it becomes individual. 
    This link will allow  you to gain a better understanding of your type and a further link within about pathology.  The pathology report after surgery gives a greater understanding.

    https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/

    Take care 


    Thank you. Googling is not very wise at all, but I can't stop doing it obsessively. Maybe I should really calm down, as far as it is possible in this kind of situation, and take one step at the time, considering that we are all individual situation even if with the same diagnosis.

    Thank you for posting the link. Found it very useful
    Take care.
  • arpiearpie Mid North Coast, NSWMember Posts: 3,866
    edited December 2019
    SO Sorry to see you here, @Simo, but welcome to the community - hopefully we'll be able to help guide you as you try to understand what is going on & what will be happening.  You're currently being bombarded with heaps of information & it can be tricky to absorb & understand it all, let alone remember it all.  Maybe record your meetings with your surgeon & other team members on your phone, so you can go back over it later - as it is very easy to miss a few statements, whilst pondering the previous one!  Also, take a buddy with you as an extra set of ears is invaluable.

    OK - so your surgery is set for next Friday?  Keep yourself REALLY BUSY doing stuff you love in the meantime - and Yep, stay away from Dr Google - some of the info on it is 10-20 years old & may well give you totally wrong advice.  And everybody's case IS individual - so It is better not to 'second guess' the procedures & outcomes, as that will all be revealed, post op, with the pathology report.  Then you will be given an overall 'plan' for the next 6 months or so about a week later.

    Trust in your medical team - they will be doing what they consider is the best option for your condition. Whilst I was oest+ & Prog+, I was HER-.  My surgery was immediately near my nipple tho and I had the nipple sparing lumpectomy and immediate 'recon' by using some of the breast tissue to fill in the gap.  My margins were 'clear' tho one was 'thin'.   I had 2 tumours removed and 3 nodes that were also clear - mine was Invasive Lobular cancer.  My scarring is minimal & I still have full sensation of my nipple.  Because of the tumours' location, I was also able to have my radiation lying face down, so less chance of the rays hitting other areas in the body.  I've just seen one of my specialists the other week & they are happy with how I am going, approaching my 2 year surgery anniversary (Jan 2018.)

    Once you've had your surgery - you'll be amazed at how much 'easier' it was than you're currently thinking it WILL be!!  (That is what I found.) . The important this is that the tumours were OUT & I wasn't too sore and didn't have too much discomfort! (A small cushion will be invaluable for helping you sleep even in hospital if staying in overnight, so make sure you take one with you, to support the arm.) 

    Sure the first few days at home, there will be some pain (just make sure you take the panadol etc that they offer - and keep it up for about a week - longer if necessary!)  Going home after the surgery - make sure you have the small cushion/pillow that you can clutch to your breast as you are driven home, as every bump in the road (or kerbside as you go to get petrol or into your driveway) will seem like a mountain!   Even after I was back driving - when I approached a 'known bump' in the local roads - I would grab my breast to stabilise it.  Whilst I do not have a 'big bust' - it still bounces around with bumps!

    The worst thing about BC is that it totally mucks with your brain & we tend to overthink EVERYTHING! The brain just goes into overdrive, bringing up all the 'what ifs' and this in turn can have a terrible toll on your sleep & your general ability to 'cope'.  If you find yourself getting extremely anxious about everything - ask about seeing a counsellor asap - or ring the Helpline here on 1800 500 258 - as most people have at least a 2-3 week break over Xmas, specialists included & you may not be able to get in!  Maybe even ask your GP for a low dose sleeping tablet to help if you are wide awake at midnight-2am .....   

    With Xmas being so close, the blog here will have a skeleton staff online - but many of us will be checking  in daily to see who posts what, so maybe chatting with someone here sooner than later will be more beneficial for you. 
     (https://onlinenetwork.bcna.org.au/discussion/21804/support-during-christmas-and-new-year#latest)

    All the best for your surgery next week, take care . xx
  • iserbrowniserbrown Regional VictoriaMember Posts: 4,117
    Great advice from @arpie!  
    Once admitted to hospital I met my breast care nurse who fitted me for the free bra and gave me the cushion and bag for the drain.

    Deep breaths
    Take care xx
  • SimoSimo Member Posts: 7
    @arpie thank you so much for sharing your experience and for giving precious advices.
    I'm in Brisbane and i've been looking for support groups or integrated therapies structures and found out that there's only one place I can go to, 15 minutes away from my place. 
    I am not sure if the hospital i'm having surgery in has a service of individual counselling as I went through the medicare site and got lost in all the informations and links provided there.

    On top, I moved to Australia 2 years ago from Italy and "the system" is not the one I was grown up in and maybe this increases dramatically my anxiety (which I admit even in not stressful situations has always been pretty much unmanageable and I 've had to get it controlled by medicine in the past).

    Thank you for explaining in such a gentle, kind, sensitive way all the details surgery/recovery  related.
    I have to manage my fears as they are severely affecting my daily life. I'm loosing sleep and a bit of weight and I' concerned that the kids, to whom I've told that that the procedure is because there's something in mummy's breast that has to be removed, will absorb my anxiety and I absolutely do not want them to stress at all.

    I will surely ask my GP for a low dose sleeping tablets if I realise that I'm going too far with sleep deprivation.
    Thank you for the time you dedicated to my concerns. Much appreciated.

    Take care xx

  • arpiearpie Mid North Coast, NSWMember Posts: 3,866
    My pleasure, @Simo - we all remember the shock & aftermath of getting our own diagnosis, so I am happy to be able to help xx   Others will jump on with tips as well!!

    There is a lot of discussion just now about minimising surgery whilst maintaining clear margins - in the old days, pretty well everyone just had mastectomies and chemo then hormone tablets - irrelevant of the staging etc.  Nowadays, they are trying not to 'over service' breast cancer patients - tho you may be recommended chemo and/or radiation, totally dependent on your pathology results.  

    Welcome to Australia too!!  You are doing so well so far, in a new country, coping with new systems!  ;)  Maybe, tomorrow, just ring the BCNA helpline & discuss your fears - as they may be able to give you some coping strategies or even point you to a specific area in Brisbane to help you if needed.   Most hospitals have a Social Welfare person who should be able to help point you in the right direction too.

    I live in a rural town without a hospital & my surgeon only had me stay in overnight because of this - otherwise, I may well have gone home the same day if I'd lived in Sydney (where I had my surgery.) 

    How old are your kids?  There is an Australian Wide group called Canteen who they can met up with (if they are between 12 & 25), specifically aimed at helping kids who's parents have cancer.  Sometimes they arrange outings or sporting opportunities too. 
    https://www.canteen.org.au/

    There is also a group here for young women that you may like to join - click here & then on the 'join button' top right corner. Sometimes members form their own support group by meeting locally!
      https://onlinenetwork.bcna.org.au/group/10-young-women

    Here is one thread on women with young children - why don't you whack a post up on it to reconnect with them .. (if you go to the 'Discussions' page & put 'young children' in the search area - it will bring up other posts.  Or you can search any word that you like!)  I will 'link you' to a couple who are from Brisbane on the post @jane84 @Gigiinbris who may be able to help you with more local support groups etc
    https://onlinenetwork.bcna.org.au/discussion/19028/mums-with-young-children
     
    Take care, take deep breaths, take one day at a time ..... and remember your kids will be following your lead - if you are worried, they will be worried I reckon!  As you have already done, keep your conversations with them, simple and calming - I hope you have supportive family & friends around you as well, for your own support   xx
  • SimoSimo Member Posts: 7
    @arpie thank you so much for providing all these information.
    I will surely contact BCNA.
    I will also see if the girls from Brisbane can give me any advice/recommendation.
    Thank you once again for being so supportive and for making me feel less lonley as I have little friends/family here for my own support. 
  • Anne65Anne65 Member Posts: 347
    @Simo Welcome to our wonderful forum & to Australia! So much good advice above but we all like to add our little bit extra!! I had DCIS Dec'17, stage 1 but aggressive & had a lumpectomy with clear margins. i am small breasted & during the surgery, my surgeon took tissue from below my breast to fill in my gap. My cut was low in my left breast & now you would hardly even know I had surgery, she did such a good job. I had rad but no chemo or further medication...very lucky. So, it is possible to have small breasts, a lumpectomy with clear margins & come away with boobs looking virtually the same!! 

    Everyone is different & there are so many decisions to make. Be guided by your medical team, not Dr Google but the choice is yours at the end. Read info from BCNA & Cancer Council websites or brochures from the medical waiting rooms. Take someone with you to all appts or record them/take notes as there is a lot to take in. I found a McGrath Breast Care Nurse from their website & emailed her. She is wonderful & I can ask her anything & all the dumb questions or things I forgot to ask or dont understand. She is medically trained so can advise me on what I should do. They can also counsel you & your family if others need support

    Cancer is like another language. i still dont know half the stuff written on here as it hasnt pertained to my situation but we learn quick! Try to focus on the here & now & what you DO know & not what MAY happen as it may not eventuate. Things change all the time & stress fuels cancer so dont waste your energy worrying on something you dont need to. Easier said than done but i learnt very quickly. i worried about things that may happen in the future & they never happened. Decisions that I thought i would have to make were made for me by my medical team & I agreed with them all & I havent regretted any of their decisions. Tomorrow I have my 2 year mammo & get the results from my surgeon straight after. I hope to tick off 2 years & I am very lucky that my life now is pretty much as it was pre-cancer.

    With your surgery coming up quickly, try to focus & you & getting yourself mentally prepared. Get some meals in the freezer & spend time with your kids. Accept help/meals/shopping/driving kids from anyone as they want to help. As @arpie mentioned above, there are lots of support groups for kids out there & they do amazing work.
    I know the next week will be hard but soon your surgery will be over, cancer removed. the care in the hospital is amazing. I had a wonderful breast care nurse who fitted me with a free bra, gave me a goodie basket of gifts including a beautiful pink pillow that I clutched lovingly for weeks after. We are all here for you. Dont be scared & take each step as it comes. Breast cancer care is amazing with so much support so you will not be alone. Wishing you love, prayers & strength. xx 

  • SimoSimo Member Posts: 7
    @Anne65 thank you so much for your support and advice, which I will follow for sure (didn't think about preparing meals next week to have them ready when I get back home after surgery, thank you for reminding me).
    I'm really trying hard to concentrate on the here and now.
    Unfortunately I have grown up in a family devastated by cancer (not BC) and I think that I've been really traumatised by it, never been really able to elaborate the trauma (tried with counseling but had to be medicated with a proper therapy for anxiety and  PTSD).
    I have lived in fear of what is happening now for my entire adult life. 
    This is why I don't succeed in taking one step at the time trying to stay focused just on the next step. I have seen too much and I fear what expects me in the whole process (if I am lucky enough to see the end of it :( ).

    Sorry for being so negative, maybe if i had had a different background it would be easier to cope with this terrible moments.
  • SisterSister Adelaide Hills, SAMember Posts: 4,580
    You're not being negative @simo.  Hearing those words that you have breast cancer is bloody terrifying.  The time from diagnosis to surgery was for me one ranging from utter despair to numbness and back again.  I had lost my older sister to this 20 years before (she got it quite young).  I was so worried to not be there for my kids who were 11, 12 & 15 at the time.  Two years on (on Thursday just gone) and I'm NED (no evidence of disease) - that's the best it will ever be but that's enough.

    As @arpie has said, minimising treatment is now recommended as there is no difference in the outcome.  However, that does not mean that the treatment is less, only that it will not be more than is required by the presentation of the cancer.  Mine should have been a lumpectomy followed by radiation, but due to the type of cancer it was (lobular), when the surgeon went in, it was impossible to get clear margins and it had spread to the nodes even though it hadn't been detected on the scans.  Back I went 2 weeks later for a mastectomy and axillary dissection, followed by chemotherapy and then radiation.  So, just because the less impactful treatment is recommended, does not mean that you won't get what you need if it should turn out that way.

    I don't know how old your kids are but my advice would be to tell them what is going on as is appropriate for their ages and, if they are old enough to understand it, that you will always tell them what you know and not keep secrets.  Secrets can be very scary things to kids and they need to know that, no matter what other thoughtless or well-meaning people say to them, they have the inside knowledge. 

    Do you have a partner or friend here that you trust as an advocate?  If you can, take someone with you to appointments.  It's amazing how much information doesn't get through the fog so it's good to have another pair of ears and someone who can ask intelligent questions.  Most doctors expect it and even suggest it.  If you haven't got anyone, ask if you can record your appointment so that you can refer to it.  And if you have questions, write them down before you go in.

    If your anxiety is becoming overwhelming, please try to access counselling with someone who understands cancer.  As with everything, there may be someone on the forum who can provide some assistance with local information - add your general location to your profile but never be too specific.  

    My only other advice is to try to take one step at a time and one breath at a time.  You will get through this and we are here to support you.
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,392
    Sorry to hear you had to join our group. My cancer was agressive and had gotten right up to 5cm which on a tiny breast was huge. The doctor recommended a lumpectomy but I felt my breast had really failed me and just wanted the entire thing gone and got a single mastectomy. I also asked that the other breast be taken but the surgeon refused which as it turned out was wise as mentally I would not have been able to cope with both breasts gone.
    The final pathology of the breast showed a suspicious area on the other side of the breast as well and one of my lymph nodes was also positive after all scans assured me they were clear so you never can tell. I had a second surgery to remove all the underarm lymph nodes, just to be sure but none of those turned out positive so we were sure it had not spread anywhere else then.
    I developed PTSD after the surgery but the worst of it was dampened with medication which I turned out to be allergic to and I ended up just soldiering on by myself but supported by the wonderful ladies on this group and I got through it. 
    Nothing is easy about cancer but you will find a strength you never knew you had and you do somehow muddle through it all. Hugz <3
  • SimoSimo Member Posts: 7
    @Brenda5 thank you for sharing your experience.
    I know that is all individual but I'm really fighting to cope with this.
    Maybe, once that I start my journey, I'll be able to find strength and to focus on one day at the time.

  • Anne65Anne65 Member Posts: 347
    @Simo Sorry to hear that you have been through so much tragedy in your life. I imagine this has taken a huge toll on you & then discovering that you now have cancer, has completely shattered you. You're not being negative but are just showing a natural response to how scared you are & how this discovery is something you think is quite insurmountable.
    Many of us here, me included, have lost loved ones through this disease so we can relate to your fear. I lost my mum when I was 4 y.o. to ovarian cancer so following my BC surgery & rad treatment, i chose to have my ovaries removed so it would remove the chance of me getting a secondary cancer there. I remember lying on the operating table with tears in my eyes saying to the surgeon that i was doing this for my mum!
     Sometimes, information gives you power & an understanding of how to move forward. You could use your family history as a way to learn about what may be best for you in regard to treatment & future planning. Have you discussed with your medical team about getting a genetic test done. if you have had many in your family succumb to cancer, you may be eligible to have a free test. There are lots to consider if you go ahead, but it could change the direction of your treatment plan depending on the outcome & it would also be information for your children in the future. I had the test & it came back negative so i went ahead with my treatment plan. 
    I know you have said you tried counseling but have you tried seeing a clinical psychologist who specializes in cancer patients. I have heard them speak at conferences & they are amazing. You could ask a breast care nurse, someone from your medical team or hospital staff, if they know of anybody suitable.
    i will be thinking of you this week & wishing you love & strength as you prepare for your operation. Go for long walks, take in the sunrise/sunset & deep breaths. xx.   
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