Freaking out about Mastectomy
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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 xx3 -
Sorry just a Clarification I meant that I am not sure how to TAG people and respond personally to specific comments within my post.0
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@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.
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Ok thank you I will try that.
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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
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So glad things are looking less daunting...well just a tad...as confidence in your team does help that. Kath x0
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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 B1 -
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
Vicki0 -
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.
Nikki0 -
Best of luck with surgery and hope all goes smoothly.0
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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.0 -
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 xx1 -
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 vicki1 -
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 x1 -
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 xxxx1
