Freaking out about Mastectomy

Vallerina
Vallerina Member Posts: 183 ✭
in Newly diagnosed

Hi Everyone, 

So, My surgery is booked for 27th March, which is next
Monday. I had no choice, Right mastectomy. The surgeon suggested   immediate recon with air inflatable tissue
expander to be replaced by a silicon implant later on would be best recon
option for me at present. They will test sentinel node while I’m under and may
take out the lot if sentinel  is positive, I won’t know till I wake up.

 I’m scared of lymphodema as
I’m really active and do heaps of gardening, sport  and laboring work. Well not as much lately
actually, since I was diagnosed in  January I’ve been a bit emotional and unmotivated.

I was worried everything was taking too long,  but now Im terrified because its happening
too fast.

 Has anyone had this
surgery in Royal Brisbane & Women and how did it go. Im very scared.

Has anyone had an MRI that gave a
false positive? I keep fantasising that they are
going to realize its all a mistake, the bright area on my MRI isn’t  DCIS after all, just some harmless change. Even
though I’ve had mammogram, ultrasound, and MRI. plus 2 biopsies in the area on 2 different days, by 2 different
pathologists  that both came back as high
grade DCIS, +  I keep hoping.

What if my breast is gone and then they realize it was a mistake
and the area was only small and I could’ve got away with lumpectomy.  It will be too late.

And then I think, what if they find invasive cancer and this
surgery that seems to be unnecessary overkill actually saves my life. Because
as it stands I have DCIS which isn’t actually an invasive cancer, yet a
mastectomy is the only treatment. There’s no answer, it just goes round and
round in my brain. They won’t know till the surgery is done.

I have to keep telling myself they don’t have 2 surgeons working
on you for 4 hours then keep you in hospital all week for something that isn’t real.
If they had any doubts they would do another biopsy. But I still cant quite
accept it. Actually Im going quite mad, 

I’m scared of everything. I’m normally so healthy, fit and
independent, it’s going to be awful to be so vulnerable both during the surgery
and while recovering after. But I'm inspired and encouraged by all you brave ladies that have got through this and still find the strength to support and encourage others. 

I am supposed to be camping over Easter and going to the Byron Bay
Blues Festival.  We booked it a year ago
and I’m in too much denial to sell the tickets and cancel. Ive read all the
books they give you, but I still can’t imagine how I’m going to feel. Pretty sure the festival is a no go though.

I’m not oblivious to the silver linings in my story and I am sorry
to rant about trivial concerns, but I haven’t told any of my friends about this,
so there’s no one else to rant to.My gorgeous fiancée has been wonderful, taking time
out from his work to come to appointments and support me, but he needs a break
from it. My sister in Sydney is helpful and good to talk to, but I just don’t feel
like talking to her today. I have been to 19 appointments so far repeating
things over and over plus running it round and round in my head for the last 2
& ½ months and my treatment hasn’t even started, so I don’t really feel
like talking. So glad this forum is here to  get some of this stuff off my……….mind. xx Vicki

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Comments

  • Brenda5
    Brenda5 Member Posts: 2,423 ✭
    edited March 2017
    Hi Vicki, hell no, I wouldn't cancel the festival but make sure you have some really good pain killers to take home with you. If you don't ask you don't get in the hospital system so make sure you ask. Make sure you drink plenty of water to flush the anaesthetic out of your system. You will probably have a drain in place for a while to measure output. I had like a shoulder bag thing I would hide mine in and a loose shirt and no one could really tell at all when I was out. Oh ask your breast nurse for a pillow to support your arm and protect your chest with the seat belt when travelling too. 
    I know I was the same as you. Did they make a mistake or something but I actually opened my ct scan results and slipped the cd into my laptop and sure enough I could tell it was a cancer. Mine was shaped like a goldfish would you believe? I could have probably gone with just a lumpectomy but the other side of the same breast was starting to look a bit dodgy on scans so I opted for the mastectomy and be done with it.
    Lymphedema isn't always a given and even those of us, as long as we keep an eye on things and be careful we do ok with it.
    Come on here and rant and ask questions as much as you want. We're all here for you. <3
  • SoldierCrab
    SoldierCrab Member Posts: 3,429 ✭
    Hi @Vallerina, What a rough time you have had and the worse bit is the stuff in your head. 

    It is ok to be in shock to be in denial that is part of our coping mechanisms. 
    1. what style of camping are you going on ? in a tent? in a caravan? in  a cabin ? those will all impact on how you feel about going away.... I had a double(bilateral) mastectomy back in October 2012 and I can say I didn't feel sick at all after surgery. I did have to take things easy.... NO driving etc for a few weeks. 
    2. We all come out of surgery different to each other but with common symptoms .... I couldnt sleep on my side so I got a seating up pillow this style...https://www.shopstyle.com.au/browse?fts=bed+reading+pillow it helped mind you if you have only single mastectomy you might be able to sleep on the side you dont have surgery on... 
    3. Be sensible and like Brenda5 said make sure you drink plenty of water to flush out the anesthetic out of your system. 
    4. I know it is very hard to relax but try.... have you ever done mediation ? I have a lovely CD by Petrea King called relaxation that really helped me to let go and relax. 
    5. Coming to terms with a diagnosis is hard be gentle on yourself. 
    6. Do you have a breast care nurse
    7. have you been given a My journey kit? 
    Venting is totally acceptable here.... once you have vented you often can see the way through this maze .... We also get you we understand the frustrations and fears as we have been there. 

    If you want any information or need to know where to get some support we can  help link you in to a support group etc. 

    Hugs and energy to relax and let it happen as it needs to. 
    Soldier Crab 


  • Afraser
    Afraser Member Posts: 4,444 ✭
    Deep breath! You have every chance of feeling surprisingly well after surgery. Lymphoedema is not a dead cert even if lymph nodes are involved, stats are in favour of not getting it. I have lymphoedema and I garden, exercise etc. You are not going mad, just reacting to a very stressful and upsetting situation. Sadly, as we all find out, running through every possible scenario 20 times a day does nothing but use up your energy, which you need for other things. Write down questions so you remember to ask the right people. Talk to your medical team - you are both in this together and trust is important. Don't be afraid to ask for help. Everyone starts off knowing next to nothing and being scared to ask. Vent and rant here, it helps!!
    Give that lovely fiancée some time, a good supportive man in these circumstances is a bit of a treasure! Breathe again, one step at a time and it will all get a lot clearer. Best wishes.
  • primek
    primek Member Posts: 5,392 ✭
    We all get it. Trust me you will feel better once the surgery is done. You won't know if you will be well enough to go camping until closer to the date but it might be just what you need. Sentinal node biopsies give you much less risk of lymphodema so just keep thinking this. It's not worth the risk not to have it. 

    I'll be off for my pre surgery appointment this day for my fibal changeover on the 3rd. The air expanders will allow you to control the rate of expansion so things should go smoothly. 

    Try to take each day as it comes and not guess what might happen. I know, easier said than done, but you will send yourself insane with all the "what ifs".  The plan is...mastectomy, sentinal node...most likely negative (in fact they don't always do it for dcis ) tissue expander. So that's  the plan.

    Now ...just focus on getting your hospital gear organised and easy clothes for when home. Perhaps some meal planning / cooking ahead might help too. 

    Take care. Kath x
  • fairydust
    fairydust Member Posts: 290 ✭
    I think the unknown is so hard to deal with. I rang the cancer council a lot and asked questions if I was worried. I also talked to my breast care nurse a lot. I read and and read and read anything on breast cancer . The local library was fantastic. Breacan was also very supportive and rang every couple of months. Some people do not want to read or cannot concentrate if they try to. It took me soo long to accept I had breast cancer and it was not a bad dream. One year on today, cancer has left the building . I am cancer free. Will you be well looked after? Yes.... I have yet to meet a nurse or a doctor who does not care deeply for their patients....you are not alone
  • lgray3911
    lgray3911 Member Posts: 207 ✭
    Hi Vallerina,
    You need to stop and breath this is all going to be ok. I was diagnosed on the 10th of Feb and single mastectomy was what was recommended and necessary. I opted to have a double mastectomy but I had my own reasons for that. I also had sentinel node biopsy done at the same time. I had my op on Thursday the 9th of March. I could not believe how well I felt when I woke up. I thought maybe I was just on a false high from painkillers but turns out I wasn't. I had a drain in both sides they are not painful at all more annoying than anything. I was in hospital for 4 days and by the time I was leaving I was only on panadol for the pain. My arm movement is really good too which surprised me. I have 2 small boys, am very active and love to run. Today not even 2 weeks post op and I feel great. Sleeping is tricky because I'm a tummy sleeper and it was sore to sleep on my side but I just stacked pillows high and that worked. Don't cancel any trip or rule anything out just yet. Remember cancer is just a blip in the bigger picture that is your life and your future. Try not to over think things and just deal with one stage at a time. Get as much information as you can and ask lots of questions. You can do this. The best thing you can do right now is look in the mirror and say those horrible words I HAVE BREAST CANCER. Then you've said it and it's real and now you just have to do what you need to do to get rid of it so you can live happily ever after with your lovely fiancé. Be strong you can do this! Xxxxx
  • socoda
    socoda Member Posts: 1,767 ✭
    Hey Vallerina, just wanted to say sorry that you have joined us and am sending you a big cyber hug!! I had a single mastectomy (left) with immediate reconstruction using an implant. Also had sentinel node biopsy with 4 nodes removed. I like to think if myself as being fairly active and I don't shy away from anything. I was worried about how physical I could get after surgery and am nine months post and can now do push ups and will soon be going back to krav maga (mixed martial arts classes). I carry the same weight loads that I did pre mastectomy and don't hold back on anything I want to try doing. You do get a bit nervous about trying things but it's like my muscles are forming new muscle memory and might hurt a little bit the first time I do something and then when I return to it the muscles say"OH that's right, we do it that way" and don't hurt anymore. All good!!! I reckon try and get to the blues festival because listening to some good blues is a total feel good  experience in itself. Just start off being a bit gentle with yourself. Xx Cath
  • melclarity
    melclarity Member Posts: 3,528 ✭
    Hey Vallerina, firstly I want to acknowledge and validate absolutely everything you said! Ive been doing this 6yrs now 2011 and recurrence in 2015 and I have still had moments where I thought they GOT IT WRONG! So normal, lets face it, it doesnt make sense right?? you feel absolutely fine, fit healthy no symptoms lumps or anything hmmm so how could it be true? it honestly sends you MAD! What I can tell you is this, this is the worst part where you are, ONLY lumpectomy or complete mastectomy will give you absolute pathology it will override any other test, scan, biopsies all of it are only guides. Surgery is the only definitive way to know exactly, I had lymph nodes taken last time and no problems at all, I had no node involvement however. I do know if its wide spread DCIS its too difficult and they do a mastectomy. Its hard to know how you will be after this surgery, Im 3 weeks post Left Breast Mastectomy/Diep Flap reconstruction so a much bigger op as it involves your tummy and it really is a massive incision and healing. My drain came out in 2 days!! thats right, yet others can go home with them a week later, everyone is different. I am managing really well now, not doing alot as walking was a problem, but for what youre having done, painkillers and some great support you may be able to manage your plans. What I learnt through the last 6yrs is to have zero expectation, Im an incredibly independant woman too, worked and single parent and done this twice with little support. This is the one thing that was out of my control, when I let go once I hit treatment, my body dictated my life and I went with it. It will change you in ways you never thought...not everything that comes out of it is bad...some of my best learning about myself has been through this. ITs scary!!! but once you do surgery, get results you'll have a plan and you will settle...it will be up and down and I found it useful to reach out to my Psychologist pre surgery who I hadnt spoken to in 3yrs, it was enough for me to find acceptance and let go of attachment to my physical self...because it doesnt define me.. Your fears are so real, your confusion, but you will get through it...and we have a wealth of experience and knowledge and just good old love and support to help carry you. Best of luck for surgery, you'll do great!!! Melinda xo
  • primek
    primek Member Posts: 5,392 ✭
    Oh one thing if time...I had a dental check done prior my surgery so all good to go for chemo...I already knew I was having it though. 
  • Busymom
    Busymom Member Posts: 1 ✭
    Hi Vallerina, reading your comments took me back to my own DCIS journey.  High grade DCIS often does not stay contained for long and so, if it is a large area, does need a mastectomy.  Because of controversies in treatment of DCIS it can make you second guess treatment plans - please know, from what you've written, that I feel you are on the correct course of action, hard as it is to face a mastectomy.  My mastectomy pathology showed that my widespread high grade DCIS turned out to have two different invasive components in it.  This helped me to accept that I had done the right thing.  Hugs and prayers for next week...
  • Chorsell
    Chorsell Member Posts: 462 ✭
    Hi there - ditto to all the comments above - I was also high grade dcis - had a lumpectomy as biopsy was not conclusive and still ended up with mastectomy as the area was so large... better to be safe than sorry...

    painkillers, and sleeping will be the two things you will need to consider if you are going away ... if you can manage it it will probably do you the world of good .. I slept propped up with lots of pillows for several weeks...

    you may may want to join the closed group on the network for "Choosing Breast Reconstruction" as you may find some more specific info on your recovery helpful.

    @alpal can you give some info re airexpander recovery?

    all the best

    Chris
  • brightspace
    brightspace Member Posts: 457 ✭
    Hi Vallerina   Wishing you good healing vibes for your surgery next week. I chose masectomy for dcis but no recon we are all different. Great advice from everyone ...... xx huggs Bright
  • Bon Bon
    Bon Bon Member Posts: 37 ✭
    Hi Vallerina,
    i had breast cancer in my right breast, they said could do lumpectomy, however after my sisters reocurrance I chose double mastectomy. With muscle air expander so. Went ahead on27th feb. they still hurt. I cancelled camping at Easter.  They did the node test at surgery found cancer so then had 11 out. I saw a phisio that specialised in our surgery for help I see radiation oncologist tomorrow and chemo oncologist on Friday . Ballerina it is painful and it a process but you can do it, just put one foot forward and get one thing under your belt, then another, and say ok that's behind me, I'm just a little closer to the end of this !  Best wishes

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