DCIS

Welcome @Frenchbee to this club none of us wanted to join.  Like you, this was my first ever foray into social media and I was terrified ! 
Like you, I also had extensive DCIS but I was rushed into a single mastectomy which was not skin sparing or nipple saving.  Where I was treated there were no breast surgeons, just a general surgeon who was no tailor ! 😏
If you had not already done your research I would be telling you that, knowing what I know now, I would go for a double DIEP.
You are in good hands with a psychologist and that is a big plus for you as you are obviously quite aware of your feelings etc.
I see you live in a lovely suburb so I am feeling jealous - I am an ex-Melbourne gal and still consider myself a city girl.
Have you joined the private choosing breast reconstruction group on here ?
https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction
All the best and do keep in touch so we know how you are.  ❤️

@june1952 Thank you most sincerely for your very kind reply.  It's really nerve wracking to post when you're not used to it, isn't it?  I'm so sorry you weren't given reconstructive options.  That is absolutely awful and must make things so much harder for you.  The mental and emotional part of this diagnosis is incredibly difficult (for me anyway) as I am lucky enough to not need to focus on a life-threatening diagnosis.  It's all about the permanent physical impact and loss of my breasts for me.  I do hear that women who live regionally or rurally face many more challenges with health care than those of us living in major cities.  It seems so wrong.  We do feel so lucky to live in this area - we moved here from Brisbane almost 20 years ago now.  We absolutely LOVE Melbourne - such a beautiful place to live.  The psychologist is fantastic - unfortunately she is away for a month until end June - which is terrible timing for me as the anxiety, depression etc is just mounting and mounting as the surgery gets closer.  I have applied to be accepted into that private breast reconstruction group - thank you so much for that.  Definitely looking for some reassurance around the surgery, as it is really frightening.

@Frenchbee - terrific that you seeing Dr Charlotte Tottman ..... we have a bunch of her 'what you don't know until you do' webchats available here ... so you could listen to them 'in between visits' ..... She had a double mastectomy and chose to remain flat ... you can read her story below (pdf) and listen to her podcasts at the link below.  Click on the one that says '22 tracks' and start on No 13-22 (the first one in the first series) and listen to as many as you'd like .... her 2nd series are the ones showing 'first' - No 1-12!!
https://soundcloud.com/search?q=charlotte tottman

And if you would like to chat with someone in person - give our help line a call on 1800 500 258 (Mon-Fri, office hours.)

Try & keep as busy as you can in the meantime, in the lead up to your surgery.   You could cook some meals & put them in the freezer, so it is one less thing to 'worry about' after you leave hospital - and cook up all your favourites, so that you know you'll enjoy them!  ;) 

Also jump onto this thread that has a bit more info about the blog .... even some off-topic threads, like pets, gardens, art & craft ..... there are ticksheets down the bottom, that you can print off & 'self assess' how you are going, both emotionally and physically xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest ;

take care & all the best. 

@Frenchbee so sorry for your diagnosis, we all know how you feel but it does get easier as you go along the journey and know what’s ahead. The fear of the unknown is what rises the anxiety levels although you have already had to deal with it with your family, all different when it’s you though.
I was diagnosed with DCIS 5 years ago requiring surgical removal, no other treatment. In January this year I was diagnosed with a 4cm lesion in the same spot, picked up by mammogram, I would never have felt it. Mastectomy followed in March, I am currently going through Chemotherapy as cancer had spread to one lymph node. I can honestly say the Mastectomy has been the easiest part of this journey, I was absolutely beside myself prior. There was no pain at all. I chose not to have a reconstruction, I’m happy with a prosthesis. 

@arpie 
Thank you so much Arpie - I have already worked my way through all Dr Tottman's podcasts.  What a wonderful resource!  I can't believe I actually got in to see her - my breast care nurse recommended her.  My beautiful friendship group have organised a "meal train" for our family for 6-8 weeks post-surgery.  I am very lucky to be so well supported.  I am still working fulltime at the moment which generally keeps my mind occupied during the week.  I find the 'monsters' mostly come at night or on the weekends 

@CeeCee
Thank you so much for your kind comment.  So lovely of you to take the time.  I'm so sorry to hear about your recurrence - that must have been shocking and very hard news for you.  And that it has also spread to a lymph node - very difficult.  I guess my grief is really all around losing my breasts at the moment, as I am lucky enough to have a very good prognosis.  I really love my breasts (weird thing to say, but here we are) and have always felt they were my best (and only good) physical feature.  They are almost part of my personality - always been the girl with the big boobs and the big laugh.  Both going to be gone now.  I can't imagine ever being truly happy again in myself.  I've gone through lots of big grief/situations in my life and I totally understand that you learn to live with things.  But I think you just build more emotional muscle to carry them, rather than it actually going away.  I just don't want to carry this grief with me for the rest of my life - and I think I will.

Hi @Frenchbee,
I'm so sorry to hear of your BC and everything you have  to face, I too am a girl who loves her own breasts, and feel that her breasts are the only thing that me feel like a woman and dear I even say it, sexy, So I truly appreciate how you are feeling, I was lucky in my very first round of this horrible disease, they 1st surgeon said no it will be a lumpectomy, I felt relived, but second time around, the new surgeon wanted to do a double mastectomy  that I fought tooth and nail against, here in QLD under the public system they don't offer us chicks a reconstruction at time of breast removals, we have to wait for up to 3 years, 

I too am in my early 50's, I'll be 52 this coming Dec, I guess I do not have any magic words to say in loosing your breasts, but just know I feel your pain and totally get it when you say you love your breasts, cause I love mine too. I did see an FX artists (special effects artists), do a die cast mould of  her friends torso covering her breasts before she went into surgery to have her double mastectomy, as a way to remember and acknowledge her breast - the result was like those beautiful sculptures 

here is her link
https://www.wowfx.com.au/projects/breastcast--pre-mastectomy-2024

(if you have any questions please feel free to get in contact with Danielle and book your session for a pre or post surgery breastcast in Melbourne.)
 I just copied this from the website on her page. I'm not to sure where you are based?

I totally understand if this is too soon and too confrontational for you,

But this could also be something to think about and could be a personal way of saying good bye to your breasts, "gosh even I'm now crying just typing that ::neutral:"  & the start of a healing process for you maybe? xx 

Since my breast cancer journey, I've been seeing a phycologist from the cancer council here in Brisbane, its been a hell of a messy and angry journey, but it helps. another avenue to consider when the time is right for you.

Thinking of you, and sending love to you as you make your way through this part of your story.
You have found the right place to land when needing to vent, talk, or ask questions, this forum is very good at all of that :smile: 

@Maree72

Gosh Maree.  

Thank you so so much for your kind message.  I am absolutely bawling just reading your beautiful comment.  It's such a relief to hear from someone else who feels the same way.  I have been feeling so isolated with my pretty intense reaction being focussed on the loss of my breasts rather than the cancer bit. 

I've been worried that my reaction will be seen as shallow or vain - but it's not, I don't think.  For everyone else in the general public - they won't be able to tell (hopefully) when I'm in clothes.  It's about how I feel about myself, what I will see, how my body will feel, my confidence, how I feel as a woman. 

I've always been the girl with the great boobs and laugh.  It's my whole identity.  I don't know who I will be anymore - I will have neither.  I can't imagine laughing again.

There does seem to be a wide spectrum of how women feel about losing their breasts.  I can totally understand people who just want them taken off and the danger removed - but I am right at the other end of the spectrum. 

I'm almost willing to compromise the recommended medical treatment to keep them - almost, but not quite.  

I spoke to my breast surgeon again yesterday - he was really lovely about it but he said that if he put my case in front of a panel of breast surgeons, the recommendation would be unanimous about the surgery.

It's even harder to accept when my diagnosis is "just" DCIS - it's not that I am wishing for a worse prognosis at all.  I know I'm lucky that they caught it at this stage.  Its more that the huge physical sacrifice I am being asked to make feels really out of proportion to the stage of the disease.

Thank you also for your lovely idea about the cast - I actually already had some (tasteful) professional photographs done as a memory. Crying even typing that - it was a very emotional session with the photographer and she was very sensitive about it.

I think I'm still in the grief phase, but I'm starting to feel anger too.  Seriously, it feels like there has been no progress since my mother's mastectomy 33 years ago with the only recommendation to amputate my breasts. 

It just doesn't seem real. 

God knows how I am going to make myself turn up to this surgery.  Every cell in my body wants to run.

I can't believe you've had to face this whole thing twice.  I am out of my mind at this first situation.  I am also so shocked that you would be expected to wait 3 years for a reconstruction!!  That is appalling. Why would it not be done at the same time??  I could not manage at all. 

We are paying for private treatment and it is SO prohibitively expensive, that is for sure. 

What did you end up doing in your case?  Did you manage to win the fight for the second round of treatment?

I'm so glad you have a psychologist - I have started seeing one, but unfortunately she is away for the whole month of June.  Terrible timing for me with surgery in 19 days. 

19 days left of being a whole person with my own breasts.  It's unbearable.

@Frenchbee :smiley: 

Don't be silly, in thinking you are being crazy etc on thinking about the loss of your boobs and not the cancer, this is massive. our breast make us who we are, some chicks love them other chocks don't like their at all, its just they way the world goes.

That was me too at the very start, back when the original GP told me it was breast cancer, I had no idea what I would face, or that there was a thing called a lumpectomy,

I just thought oh god they will take my boob, what now, what about all my beautiful bras, I love my pretty Lingerie, its a guilty pleasure of mine, and why not, I have big boobs that deserve to be held up in stunning laces and satins etc, that's how I express myself to me and well my partner (husband) and I will not be ashamed for that, and neither should you be ashamed of how you love your body and boobs.

I too like you, thought I was the only one out there who liked, loved their boobs, as I too found so many women saying to me, just get them off, they are killing you, clearly that's how perhaps they viewed their breasts, take take them off they are only boob, but to me that was just as cruel as being told I had breast cancer, so never feel bad, silly vein or anything about how you are coping with the loss of your beautiful boobs. You do what you need to do. And if you ever need to reach out then please do so, there is a tab on this site to private message as well as post on the site (like this)
Because I really get ya and how you feel about your boobs.

So I totally understand what you are saying, how you are thinking, the grief you must be trying to process. 

I guess if I had been offered a reconstruction at time of the second time around of being diagnosed with the beast caner, and the new medical team wanting me to take the easy road out (for them) of choosing a double mastectomy, I possibly would have, 
It was like oh cool new titties for Christmas, as my surgery ended up being in Nov of 2023. but thanks to QLD public system and no reconstruction would be offered, it was a hard, Hell NO!

I guess I was thinking that if my boobs are trying to kill me,  and they were starting to sage you know at the age of 50 they had a pretty good life, they were perky, youthful, then feed 2 babies, got sun burnt in my teens and 20's possibly my 30's in a bikini - alright even in my early to mid 40's cause if ya got a good set of boobs why hid them is my way of thinking.
I had tried to use that boob tape to hold them up to het that lift again, so if new boobs meant I would be  going to the rest home with perky boobs why not? 
After all loads of ppl get things replaced, hips, knees, etc etc, so new boobs for the next 50 years of my life could be a good option? not that I plan to live till I'm 100 though ( haha)
But the offer wasn't one to be given to me. So I wasn't going to let them go, like I can re grow my hair, but not a new pair of boobs, puberty has truly passed me by now.

I didn't see why I need to make my surgeon's life easier by just off with the boob, and I fought and fought and fought to make sure that wasn't going to happen.
I even said to the radiologist who was doing all my pre surgery tests and biopsy who also kept on saying mastectomy to me, that I should have this, 
That one day I snapped on the treatment couch and went 
Look mate its 2023 not 1985 and this off with the boob has to stop!
He left the room soon after, 

My cancer was at the start stage one early breast cancer, my 1st diagnoses was 14 Th Dec 2022 the day before my 50th birthday, the second time came 8 months later 1st August 2023, so I haven't even cleared my very 1st mammogram yet. my 1st surgery was 27th Jan 2023 and the second one was 8th Nov 2023.

The original team took the lump, told me I had clear margins and nothing in the lymph nodes, excellent we all thought, little did we know, that in fact they gave me a false neg and they had left the cancer behind in the lymph nodes causing the reoccurrence, I wasn't happy with the how the scar was feeling a few months from the original surgery in Jan of 2023, so I wanted it checked out, no one would assist me, I wanted a second opinion, it took many moths of banging my head against many doors etc, but eventually I was heard and seen by now the new medical team, So last August of 2023 just after I had done the Dry July fundraiser, I was re diagnosed with breast cancer for the second time, I was as mad as hell.
I was told it was in my lymph nodes and had bene left behind by the 1st medical team who did my surgery at the 1st hospital, 

My story is like something from a Steven King Book, its not been easy, its been met with so many challenges, I've had to fight every step of the way, its rather depressing to look back on with all the side effects I was forced to deal with.
This second of breast cancer - was now stage 2 breast cancer, but still classed as early, hence why I ended up with chemo and now I'm 1/2 way through radiation then back to medical oncology to talk about those horrible hormone blockers, that's a completely different and new story right there. and now I've just discovered I have folliculitis over my chest, breast area and up my neck, so I'm rather pissed off about that, as I have always looked after my skin as I'm a ex beauty therapist of 20 years and suffer dermatitis so skin care had always been a top priority for me. (so this is just yet again another obstacle to fix up) along with my hair, thankfully my eye brows have now grown back along with my eye lashes, I'm slowly re gaining my strength from the damage the chemo did to me, so I'm seeing a EP (exercise physio) 
My daughter is getting married 30th November this year, so I'm going to ne mother of the bride, and at the moment I look like something that has crawled out from under a rock. So I'm praying I can do something with my hair as right now it like a number 2 buzz cut ad no length, I had really nice hair before chemo took it away. and now its comes back black and grey, totally not m hair colour I did have before all of this unfolded. 

Once great piece of advice I can share, that my aunt gave me who is also a breast cancer survivor, crazy enough we both think alike, even though it only a 10 year age gap between us, ( I come from a big family on my dads side, farming family from back in the day)

We don't know what the future will hold and where any of us will be in 10 years from now, so you need to live for now, make the decisions for you in what's best for you now.

I had no retreats and still have no regrets in turning down radiation 1st time, and look where I am now, back to the start and had to restart my breast cancer journey over again after 8 months of thinking I was good and in the clear.
I hate to think if I had done as they wanted and had the radiation, now knowing I still had the cancer in my lymph nodes, could I of the had a second round of radiation so soon after the 1st lot had been given.

I guess you just need to take one bit at a time, grieve the loss of the boobs, maybe so wee little thinks, I packed up all my beautiful bras, and put them at the back of my wardrobe, so I didn't have to see them any more. 
Then when I was ready, I took them to the op shop. 
I know I still have my boobs, but I haven't returned back to wearing any underwire bras since my very 1st breast cancer surgery, I will one day, just not now.

Talk with your partner and get their views, my husband just wanted to make sure I wasn't going to die, I was more worried about how I could be seen as sexy and desirable with out my boobs if this was what I had to face.

I'm pleased to hear that you treated yourself to having some professional photos done, Go you, that's amazing. 

Take you time to talk to over everything you need to, with as many people you need to, either be Dr's, family, friends, even here, get all the thoughts from everyone, including yourself, just remember to throw out the unhelp advice people will thrust upon you as they do, 
But stay true to yourself and your believes as well, 

This way you should lesson any regret of your decisions. Knowing you made the best choice for you and your body and our life. Don't let others force you into treatments until you have researched and talked over everything you need to talk over to make that clear choice.

I regret having to have radiation, It truly goes against everything I stand for, that's a different story I'm happy to share at a later date if you like, 
I doing radiation for my husband and my adult son, and partly for my medical team who did the lumpectomy this time around, and just maybe a tiny little for me.

Please take good care of yourself and your mental health too. thinking of you at this time, and wish you nothing but the very best to be happy once again, 
If it makes you feel any better, I'm still trying to search on how to be happy again, 
some days are good and some not so good, so you just have to take it as it comes I guess and ride this shitty roller coaster that you are now thrust upon. 

Good luck with everything, let us all know how you get on
The good , the bad, and even the ugly, we are all here for you, and we get it ::wink:

@Maree72

Maree - I am honestly so grateful you reached out to me.  I have been feeling very very isolated with how strongly I feel about losing my breasts.  Definitely one of the hardest things I have had to do (and there's been some genuinely tough things in my life before this)

I have to say - this could be the line of the century and it actually made me laugh (which is hard to do right now)

Look mate its 2023 not 1985 and this off with the boob has to stop!

Right?????  I could not agree more.....

You have really been through the absolute wringer.  How awful to be re-diagnosed not even 12 months out from the original diagnosis!  

Hopefully your skin and hair recover in time for the wedding - what a lovely and exciting time for you and the family after the last few years you have been through.   

I really understand your feelings about the radiation too.  Originally that was going to be an potential option for me (i.e. another lumpectomy to try for clear margins and radiation).  Then they found even more of the bloody stuff spreading under my nipple.  With having to remove that whole nipple/areola area, there is not going to be much left to save via lumpectomy. 

Breast surgeon also now says no - lumpectomy/radiation is definitely not a medically recommended option anymore as the lesion is too extensive and is high grade with comedo necrosis changes already.  Although he obviously cannot make me choose anything, he can only advise - and I am forcing myself to take his recommendation.

I was very unhappy about the thought of radiation too - I guess there is no one who wants to have these treatments.  They are all awful - so barbaric.  I can only thank the amazing medical staff and research scientists who are trying so hard to save us all, and still preserve as much quality of life as they can.  I just pray there will be some sort of miracle breakthrough so no one had to go through any of this ever again.

I still think it's absolutely disgraceful that in this day and age reconstructive surgery isn't offered immediately and automatically to all women upon mastectomy.  I had no idea.  I am so angry about that.  I think when I get over this whole thing, I will be very motivated to start lobbying for that.  This option should not be only be available to women who can afford the absolutely astronomical costs (honestly, the costs are horrifying).  It's not a bloody luxury or cosmetic procedure!

I really do understand that many women just want rid of their breasts and the corresponding danger to their lives.  That is actually such a sensible and logical response.  My reaction is not sensible and logical at all and that puts me in a much smaller pool of women and right at one end of a spectrum of responses.  

In my defence, my boobs aren't trying to kill me yet - they're just thinking heavily about it.  

I am usually such a sensible and logical person and this extraordinary emotional response has really caught me offguard.  I don't know how to deal with it.  I have no tools.

@June1952 has been such a lovely support. She suggested that I post in the Breast Reconstruction group too.  I might do that too because maybe it will help the small pool of other women who might feel the same way to feel less isolated and that their feelings are valid.

Especially as both Maree and I both thought that no one else feels like us - there might be a few more people out there who might feel relieved that there is someone else like them too  <3