Forum Discussion
Freaking out about Mastectomy
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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52 Replies
- Yep the flooding has been awful. The old saying... it never rains but it pours. I think we can all relate to that.
- Hi vallerina all the best for continued recovery. I dont think many will be camping unless its to clean up the flood disaster
- Hi @Vallerina - my experience with the air expander was identical to yours: it was hard from Day 1. I know I was warned that my expander wouldn't feel like my old boob, but no one told me how hard it would feel (like a brick really). So, you seem to be experiencing the same. As it expands further, it just gets bigger but not harder.
Also, here's how the delineation of roles worked from my perspective: the breast surgeon was responsible for the actual mastectomy, the taking of tissue, giving me the pathology results and connecting me with the oncologist; the plastic surgeon was responsible for the implant, managing the scarring, and my physical recovery post op.
I, like you, felt 100% healthy (there were no lumps or bumps...no alarm bells), so when I got the multi focal DCIS and early stage invasive carcinoma I couldn't believe it. Still find it hard. But, from Day 1, I found it helped me most to look forward, plan and be as positive as I could be in my own mindset in order to help me recover.
And now, I'm Day 4 after a DIEP Flap reconstruction and couldn't be happier with my choices.
You sound like you've reached a calm, healing space. Good on you. I wish you well. Nikki xxxx - Glad surgery went well and the expander will feel different as more air in it I would imagine.
Cancer is such a weird thing and why so sinister. You don't feel sick until its too late really ...hense why screening was brought in. Oh for some a bit of fatigue for no real reason....but that's more in hindsight. The reality is most of us have found it at the very early stage and great we are well as it means we are in good health to cope with treatment. Take one day at a time. You've got this. Kath x - Hi. Thanks everyone i had my right mastectomy and air expander done on monday. its now friday night. it all went well and i am still in the hospital as im not allowed home till the drains come out. it has been flooding at home not the house just the nearby waterways and paddocks.so its just as well to be safe and dry here. but bored. the air expander has some air in it already. So when i look down im not totally flat. @nikkid omg yes it feels hard and square and weird all the nurses comment on how hard it feels which is why im suddenly freaking out again right now. ive been doing so well emotionally but right now im having a bit of a nervous attack. i have had confusion with two different sets of instructions from the breast surgeons and the plastic surgeons as they performed the op together but both have slightly different ways of post op management. i hope i havnt done anything i shouldnt. should i even be typing with right hand??
All that aside. Good news my sentinal node was negative so they didnt have to take any others. after the surgery i felt a strange peace i looked at my reflection and i was still me. my eyes my face my hair all the rest of me was still me. I know this is just the beginning and i havent got any other results yet but so far so good. I think a lot of the fear was around the actually surgery and i would have been almost as scared if having lumpectomy. i still keep wondering if the whole thing could hav been a big mistake though as i had no symptoms at all. it sure does make u crazy. I think the camping is crazy too and wont be going.
cheers vicki - Hi Vicky,
Thinking of you as you face your surgery tomorrow. Connecting with others can be such a big help, so well done for posting on here. You may also find the online closed Facebook group "Reclaim Your Curves" is a great support as well.
I used the Aeroform expander (by AirXpander) when I started my reconstruction journey 1 year after mastectomy. It's a convenient method of expanding the pec muscle and skin to create the pocket for your implant later.
It's not painful, but just uncomfortable once you start the expansion process. This won't happen for at least 4 weeks after your initial surgery though, to allow your wounds to heal.
You'll have a drain and may come home with this still in, and initially your right arm movement will be limited. You'll be given gentle physio exercises to do each day.
Personally, I wouldn't have been up to camping or going away only 2 weeks after mastectomy surgery as your body will need time to recover and heal, but be guided by your surgeon.
Wishing you all the very best for smooth surgery and recovery xx - Hi @Vallerina - my experience was that the sentinal node biopsy was the most painful and difficult to recover from. If you want to reduce your chances of getting lymphodeama give yourself plenty of time to rest in the early weeks and do the exercised recommended. I had to get a specialist physio who specialises in this as I contracted severe cording (tightening of the tendons under the arm pit down to the wrist).
When you go camping you may need to ask others to do the heavy lifting and reaching for things as this can trigger lymphodema. Don't be a hero during the healing period - it can cause the expander or implant to dislodge and trigger lymphdeoma. If you take it easy early you'll have a better chance of getting back to normal activities in good time. - Best of luck with surgery and hope all goes smoothly.
- Hi Vicki,
Good luck! I have had the aeroform expander...and it's great that you can use the little remote control to slowly expand. You can't overdo it, because it just won't let you and once you're in the maintenance phase it's only a couple of times a week. A few tips: don't be stressed that it looks like the top of your pec is expanded as well, this is just part of the expansion process; the expander feels a bit hard, not soft like your normal breast....I was surprised by this but I think it's worthwhile letting you know :).
Take care on Monday. We will all be thinking of you.
Nikki - Hi Everyone, Thanks for the time you have all spent giving me such great support and helpful information. Its much appreciated. I will have another look at it all when I get home and decide about the festival and camping. I have gone manic trying to get the house really clean and everything organised so I'm not tempted to do too much when I get home. Being manic helps me settle my mind and stop the crazy thoughts, I have always been like that. I get anxious, stop eating and go crazy manic. But it helps. I am feeling ok now the house is clean and I have some outfits organized for the hospital. I dont usually wear PJs or nighties but ironically I did have some gift PJs that I tucked away "in case I ever go to hospital". I probably wont post again as I Have to be at Brisbane 6am Monday meaning we leave here about 4am. Which will be good, early night Sunday, no brooding in the morning, straight into it and awake in time for dinner. And I've still got a few things ive got to organise.
Hope you all have a peaceful weekend, I will let you know how it goes when I get home. 2 great things there (I am all for finding positives) . I am getting the new air expander that you do yourself at home, Which will be great as its a long trip into Brisbane;
and they have a node testing machine that tests the sentinel node in 40 mins while your asleep so if it is positive which hopefully it wont be, they can take some more in the same operation.
Cheers
Vicki
