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
- Hey Vallerina,
I too went into shock when I was diagnosed, and just three weeks later had a left mastectomy and sentinel node removal. But you know, when I woke up despite the fact I thought I might freak out, I was relieved. In a bit of pain, but okay.
We all go through this, and I arranged for a mental health care plan from my GP and saw a psychiatrist before and after surgery. It really helped!!! And you now have available to you breast care nurses, and social workers, so reach out and go chat. they understand what you are going through.
I'm going to Bluesfest too (just finished chemo!!!) but am staying in an Airbnb house in the hinterland with friends.
I think perhaps you should reconsider the camping component ...
Mind you, this is just my opinion, but what happens after the surgery is that you are sore and if you are like me, you may require seroma drainage...
Seroma is a fluid the body creates to fill empty spaces created by surgery, and mine were where the lymph nodes had been, and I needed ultrasound-guided drainage every 3-5 days for a seven weeks after surgery - it would get swollen and really tight and sore.
I had my surgery in Adelaide Sept 6, and then traveled to Sydney October 1 for a week and then onto Port Macquarie October 8. I had to go to either a clinic where they have an ultrasound machine or the emergency department of the hospital and get drained in all three locations... so you can travel and do things, but you will have a lot less energy and be very tender, and (if you're like me) a bit teary.
You need a safe dry comfortable bed when that is going on. You certainly may need to rest a bit more than usual.
I'd also request a letter from your GP to carry with you, explaining the dates of your surgeries and the likelihood that you'll need ultra-sound seroma drainage, as you may need to present to emergency to get the seroma drainage done while the festival is on. So familiarize yourself with the local hospitals - call up in advance and ask if they can do 'ultra-sound seroma drainage' at Mullumbimby and Byron Bay.
I'd say find an ultrasound clinic too where they can do this, but the festival is mainly over the weekend, so that may be redundant info.
You could also get drained right before you head to Byron which will hold you over for a few days, and if you're lucky the full five days.
So you know - after the surgery I found my side was numb as they cut surface nerves so the drainage with a big needle didn;t actually hurt at all.
And now, eight months later - I am about to start swimming again once my immune system recovers.
Ask them for exercises to do after surgery which helps maintain flexibility, and to tell you about 'cording' too and what to watch out for.
Hope to see you in Byron! and please know - I do understand and what you are feeling - it's completely normal. Do please ask for professional emotional help, as it gives you clarity, and good information plus it also relieves your family and friends from needing to be your only help, when they too are adjusting to the news and impact.
This is a long journey, and help is all around you.
Bug hugs,
Karen B - So glad things are looking less daunting...well just a tad...as confidence in your team does help that. Kath x
- Hi @Vallerina - how did your planning appointment go yesterday ? Hopefully you were able to get several of your questions answered and has eased some of your concerns.
Welcome to the forum. Not a place that you really want to join, given a choice, but we are all like minded who totally get the myriad of thoughts surging through your mind. What you are feeling, how you are feeling, whether you scream, cry, yell - are all perfectly fine and no you are not venting. Who you wish to share this diagnosis with is all up to you - this, you have total power and control over when everything else in your life seems out of your control. Your fiancee sounds like an amazing person & huge kudos to him for his ongoing support of you (those closest to us do it the hardest sometimes !)
You say that you are an active, healthy person (how ironic is that when apart from your bc diagnosis you are well). You may recover quite well from your surgery. The Easter weekend is 2 1/2 weeks after your surgery and you booked this 12 months ago. Use this as a great incentive and something to look forward to and a return to some degree of normality in your life (not ruled by your diagnosis). If you need to make the decision to not go, do it closer to the date.
We all go through periods of what ifs; could I have done things better. We are all wiser with the benefit of hindsight.
Put your trust in your medical professionals, ask lots of questions, gather the facts and with your doctors, breast care nurses and oncologist make informed decisions from the choices presented to you.
Best wishes to you, Sheryl xx
- Ok thank you I will try that. :)
- @Vallerina if you just use the @ symbol before a username you can tag people. Let me know if there is anything I can help you out with.
- Sorry just a Clarification I meant that I am not sure how to TAG people and respond personally to specific comments within my post.
- Hi Everyone thanks for all the great support and kind words of advice. Im running a bit short on data from googling "could my mri be wrong" six thousand times, which is why I am a bit slow on my responses. We had an induction day at the hospital yesterday and I got to speak to both surgeons so Im feeling informed and confident.I was diagnosed on 12th January and have had no treatment yet but one good thing about the long delay, I have had heaps of time to think it all through, but there are still unknown elements and I'm a bit of a creature of habit so its hard to be vulnerable and trust and just go with the flow.
I am a songwriter, and its definitely giving me lots of material for future lyrics.
I'm not sure how to respond personally to your comments but I have read them all and thank you so much. Ill let you know how it goes.
Vicki xx - 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 - 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
- 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
