Whirlwind

Hi lovely ladies. Been a whirlwind since my first post over 2 weeks ago. Ultrasound, biopsies more ultrasounds and more biopsies and an mri to boot. Upshot is I'm booked in next Wednesday for a double mastectomy. Just wondering if any of you have any advice for me as I near the op. I'm scared as hell but not of losing my breasts as that really doesn't bother me but I'm hoping that I can remain positive afterwards and not think every minute that the cancer is back. Would love to know how any of you dealt with this if it was an issue. Thank you xx

28 Replies

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  • Hi,

    In all honesty, nearly 2 years on from my mastectomy I still have days where I think the cancer is back but I view this in a positive way as I know I'm listening to my body and being proactive i.e if I have a cough I will be aware of how long have I had it? Is it getting worse? etc...

    Immediately after surgery I felt very up and down, I came out of hospital on 21st December so was swept along with Christmas etc..had family around me every day so just made sure I talked through my feelings before going to bed otherwise I wouldn't have slept! I received my pathology report on the new years eve and it was the best news I could of had, they got all of the tumour and lymph nodes tested negative. I think you just have to live day to day, shrink your world almost, into your own little bubble, trying to look beyond for me was too distressing. After surgery you will be kept occupied with doing gentle exercises that you will be given to get some movement back in your arms. Are you having expanders in for reconstruction later on?

  • Hi Cazlav.

    Thanks for your reply. I'm hoping to stay positive like that. That's the main reason I've chosen to have the 2 removed even though the cancer is only in one. I'm hoping to give myself the best chance at beating it for good. I don't think I'm going to bother with the expanders to be honest. It's not something that bothers me in the grand scale of things. Did you do it? Im glad that yiu ars keeping well and enjoy your Christmas this year xx

  • Yes I had an expander inserted at time of mastectomy, which was then expanded with saline over the following 12 months to allow skin and muscle to stretch to eventually accommodate an implant which I now have and am happy with, just didn't want to be flat on one side, not having nipple reconstruction though. Still have left breast which I am due to have my second annual mammogram for in few weeks.

  • Hi Knockane. I did not have to have a mastectomy, luckily the lump was tiny and removed - but I agree with Lainey. Do all the exercises you're given as I Thought I'd done enough for long enough, but started to get a knotted feeling in my upper arm, and could not get full movement. My niece had been through surgery a few months before me, and warned me just in time to keep them up, as she had suffered permanent stiffness and pain. My hospital gave me a MacMillan Cancer leaflet with them all displayed. MacMillan are a fantastic organisation, and whatever your worries, they are at the end of a phone line to help.

  • Hi Knockane, to be honest there will always be that worry at the back of your mind as to whether each ache, pain, twinge, is the cancer making a come back. It is how you deal with it that helps you get through it. Naturally if you are going to let these worries get you down you will end up in a depression etc. I had a double mastectomy in the 5 Jan 2016. I decided to have my scars tattooed over as I did not want reconstruction. I have taken up a whole host of hobbies and interests that keep me busy. I blogged throughout my treatment which kept my driven and positive. There are bound to be ‘low’ times but you need to find a strength to get over those times. I will give you my blog address - it may help you. elainemurphy66.blogspot.com remember after your surgery to do all the exercises you are told to do as you will lose or have reduced movement of your arms. All the best with your surgery and I wish you a full recovery. Lainey66 xxxx

  • Thanks Lainey. You truly have been through alot but your positivity is a great inspiration to me and all the other lovely ladies out there. Wishing you many years of health and a happy Christmas hun. XX

  • Thank you, I am happy that I can help you and others through my own experience. I wish you a very happy Christmas too and an amazingly healthy 2018 and beyond xxxxx👍❤️❤️

  • 😍😍😍

  • I think we all think that from time to time, I had my mastectomy in October 15,and was so pleased they got all the cancer and the lymph nodes were clear, had my second check up, as so far all is well, Cancer makes you more aware of what’s going on with your body, so you are a bit more cautious,I.e coughs,etc, but it doesn’t stop you living, go have your operation, rest when you feel tired (and you will) do your exercises (theses really help) and slowly get back into the flow of things.Keep a tin of Prunes handy to help with the constipation caused by the medication,(than was the worse part for me), also get short nighties or pyjamas that button up the front, for the drains, and a handbag to carry them around in.

    Hope this helps, and good luck.xx

  • Thanks for the tips Parker. Glad you are keeping well. Yes I will have to try to have faith in my doctors and believe what they tell me coz otherwise I would go out of my mind. Going to pack today and throw out all my bras so I won't be looking at them when i get back!! I'm hoping like you they get it all. I've had 2 biopsies on my lymph glands and so far they are clear so I'm hoping nothing changes on Wednesday. Enjoy your health and have a lovely Christmas xx

  • Hello,

    I'm just three months post left side mastectomy, with a DIEP reconstruction. I remember all the ultrasounds, biopsies and MRI very well! I have tried to stay positive, which I really feel helps with your recovery. I lined-up a few good books to read. I've made sure that I go out most days, even if just for a short walk, to stay mobile and get some fresh air. I find that talking about how I feel has been helpful and I have also written a lot of stuff down, to get it out of my head.

    People will understand if you don't feel like talking on the phone or in person, but try to stay in touch with your friends and family by text or e-mail, if that is less tiring. They will want to help; let them! Accept any offers to take you out for coffee or lunch. Try to stay in the world as much as you can, without overdoing it.

    Be gentle with yourself. Don't beat yourself up if you can't do something. It will get better and after a while, you will realise that you are doing things you found impossible a few days ago. Rest when your body tells you it needs to.

    I have had some dark times and to be honest, I am sure that I will always have cancer at the back of my mind. But I do feel incredibly lucky to be alive and I don't want to waste this opportunity to shape my future.

    I wish you the very best of luck for Wednesday. Take care of yourself xx

  • Hi Karen. Thank you so much for your advice. It means alot. Yea I'm trying to remain upbeat with everyone so they won't worry but inside I'm so scared. Natural I know. Once Wednesday is over I can focus on getting better and all going well after treatment get on with my life. You never know what's around the corner and I'm sure as hell going to try and enjoy whatever life I've left to the full. Mind yourself and hope you have a lovely Christmas xxx

  • Thank you for your good wishes, Knockane. It is absolutely natural to be scared, but you can and will get through this! I hope you have a lovely Christmas, too. Treat yourself to something nice. It is good to have things to look forward to xx

  • The best of luck with your operation. I had a single mastectomy 2014. The op went well and my surgeon was excellent so the scar healed beautifully. Unfortunately I opted for DIEP reconstruction a year later and have nothing but trouble since. My plastic surgeon was very poor despite my research

    Anyhow the fear of cancer is always there (with me) so try to stay positive and if you can talk to a counsellor. I have an excellent lady who helps me to stay positive and I hope for many healthy years ahead. I wish the same for you 😊

  • Hi Moirs. Glad the op went well but sorry to hear of the aftermath. Must have been so upsetting for you. I'm personally not going to bother with reconstruction myself. It's something that I've never considered so hopefully my op will go smoothly like yours and I will be up and about quickly ready to face the next part of my journey. Wishing you a happy and healthy Christmas xxxx

  • Hi knockane, I think that’s a wise decision. I wanted both breasts removed but they wouldn’t take my healthy one so hence my decision with reconstruction. It’s a long story so I won’t bore you.

    Best of luck again and I’m sure you’ll be flying in no time. Happy Christmas to you too 🎄🎄😊

  • 😍😍

  • Hi, I had a double mastectomy in February this year. My lymph nodes were clear. It took a while to get my strength back, but I did start feeling stronger. I had reconstruction in July and went back to work in September. Understandably I think we all still think about cancer and I try and live one day at a time. Keep going ladies and enjoy Christmas xxxx

  • Thanks fredster. Yours sounds like mine. Lymph nodes still clear so hope it stays that way after Wednesday. Mine is Her2- but still going for the double mastectomy. Just wondering what kind of treatment you had after yours. Did you have any? Stay healthy hun and a happy Christmas to you xxx

  • Hi, fortunately I didn't have chemotherapy. I'm on tamoxifen for the next 5 years, consultant said possibly 10. I have a lot of night sweats, so sleep is very disturbed. I'm having an MRI scan on the 16th because of nerve pain down my left side. I'm trying not to worry though! xxx

  • Hi fredster. I have those for years girl. That's how my cancer was detected. Going through a tough menopause for years and I'm only 49 so doc wanted to put me on hrt but insisted I had mammogram before I started. Lucky me!! Hope all Will be ok for you on 16th hun xx

  • Hi

    Like you, I elected to have both breasts removed although I only needed one. I also had all the lymph nodes removed from the side that did have the cancer as it has spread into those. I am now almost two years on from diagnosis (January 2015) and 18 months post surgery. I don't for one minute regret having both boobs off. It was the right decision for me and I have far less worries about the cancer coming back. I am still receiving Herceptin and Pertuzumab every three weeks. That is because the lymph nodes between my lungs showed changes between the first and second chemo. The doctors think that it is more likely that long term dust exposure has damaged the lymph nodes (I've kept a horse for over 30 years) and that the steroids I had with the chemo reduced inflammation, and that accounts for the changes rather than cancer. They can't get at the lymph nodes to take a biopsy, so they are erring on the side of caution and keeping me on those two targeted therapies. I live alone with no close family but I have tried to take the view that there is nothing more anyone can do. If the cancer does come back, I expect I will deal with it as I have this time. I do have some side effects from the treatment but as respects the actual mastectomy, no issues at all.

    Good luck, I am sure you will be fine!

  • Thanks so much sueandember.

    Indeed it will be a relief when they are gone and the doctor can give me the final diagnosis. I'm feeling a little more positive today as I pack my few things in a suitcase so I hope to continue my positivity going forwards. Like you I will not regret getting the 2 removed as I feel there is no more that I can do to give me a second chance at life and be there for my children. I'm glad you are doing well hun and wish you continued health and happiness. Xxx

  • All the best for tomorrow Knockane. You will be fine! Let us know how things go and you know where we are for support whenever you need us.

    xxx

  • Thank you so much sueandember. I'm getting fairly tearful and nervous now but I know I'll be in the zone once I get to the hospital in the morning. Chat to you on the other side 😣 xxxx

  • Best wishes for tomorrow xxx

  • Thinking of you tomorrow, you got this! have a nice treat in mind for afterwards, something to focus on x

  • Thanks so much Cazlav. I hope I can stay strong. XXX

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