Bc at 39, changing docs and other joys
FLClover
Member Posts: 1,580 ✭
Hello to all the lovely and beautiful ladies on this forum.
I have been reading comments for a couple of months now but have not yet posted. I was diagnosed in February with multifocal bilateral bc, HER-, ER/PG+, grades 1 and 2, stage 1 (only found out stage recently). I had skin/nipple sparing double mastectomy with tissue expanders on 1 April, 2 nights in hospital with 4 drains plus PICO dressing (which was put on wrong). I went private for the surgery but public for the hospital.
At post op app I was told I would need another surgery for DCIS in left nipple. I felt smth wasn’t right and asked doc for different options. He refused everything else. I went to op but got slight fever while in prep so it was postponed. I ended up having extreme anxiety and depression, was unable to sleep and lost 6 kgs that month. I felt very unheard, unsupported and didn’t know anything about my cancer. I was paying privately to have consultations with my specialist, but instead I got the junior doc.
I started seeing an onco-psychologist (wonderful woman), and my GP put me on anti anxiety and anti depressant tablets. I still wasn’t convinced about the surgery and felt time was being wasted waiting for anxiety to pass so I could have it, and thought there must be a better way, so I finally went for a second opinion (would’ve gone earlier but bc nurse told me I shouldn’t as it would be even more expensive so I was scared to). New surgeon (another wonderful woman) told me there were def other options and finally organised for me to see a fertility specialist (I’m 39), med onco and radio therapist all within a week. She said we can combine nipple removal with exchange surgery after treatment.
Her practice manager sent me readings explaining everything related to bc under the sun. She explained everything about my cancer to me (incl stage), and all reconstruction possibilities including cons and pros of each. She even showed me an expander and diff implants. I finally felt informed, educated and empowered. I went from sitting on the couch, staring into space and crying all day to the way I was before - happy, talkative and looking after myself. I’m still coming to terms with my diagnosis and have bad moments.
I decided against chemo and will start radiotherapy next week. I’m also getting Zoladex injections so I can start taking Letrazole after radio. I’m really scared of the side effects and just wanna run away and hide, but I am trying to be as brave as possible and hoping for the best. At least I now feel confident in my medical team. I used to be a very strong person, but bc I feel has made me weak and vulnerable. However I will continue to try my best.
This forum and the ladies on it have become my best friends. This is where I sought solace when I was at rock bottom. All
the supportive comments to each other have helped me find my strength, as we all share the same emotions and challenges. It has also been a source of invaluable information, especially during the time when I wasn’t getting any info from my first surgeon.
Sorry about the extremely long post, it’s been a few months coming 🙂. I wish I could give each and every one of you a big bear hug in person.
I have been reading comments for a couple of months now but have not yet posted. I was diagnosed in February with multifocal bilateral bc, HER-, ER/PG+, grades 1 and 2, stage 1 (only found out stage recently). I had skin/nipple sparing double mastectomy with tissue expanders on 1 April, 2 nights in hospital with 4 drains plus PICO dressing (which was put on wrong). I went private for the surgery but public for the hospital.
At post op app I was told I would need another surgery for DCIS in left nipple. I felt smth wasn’t right and asked doc for different options. He refused everything else. I went to op but got slight fever while in prep so it was postponed. I ended up having extreme anxiety and depression, was unable to sleep and lost 6 kgs that month. I felt very unheard, unsupported and didn’t know anything about my cancer. I was paying privately to have consultations with my specialist, but instead I got the junior doc.
I started seeing an onco-psychologist (wonderful woman), and my GP put me on anti anxiety and anti depressant tablets. I still wasn’t convinced about the surgery and felt time was being wasted waiting for anxiety to pass so I could have it, and thought there must be a better way, so I finally went for a second opinion (would’ve gone earlier but bc nurse told me I shouldn’t as it would be even more expensive so I was scared to). New surgeon (another wonderful woman) told me there were def other options and finally organised for me to see a fertility specialist (I’m 39), med onco and radio therapist all within a week. She said we can combine nipple removal with exchange surgery after treatment.
Her practice manager sent me readings explaining everything related to bc under the sun. She explained everything about my cancer to me (incl stage), and all reconstruction possibilities including cons and pros of each. She even showed me an expander and diff implants. I finally felt informed, educated and empowered. I went from sitting on the couch, staring into space and crying all day to the way I was before - happy, talkative and looking after myself. I’m still coming to terms with my diagnosis and have bad moments.
I decided against chemo and will start radiotherapy next week. I’m also getting Zoladex injections so I can start taking Letrazole after radio. I’m really scared of the side effects and just wanna run away and hide, but I am trying to be as brave as possible and hoping for the best. At least I now feel confident in my medical team. I used to be a very strong person, but bc I feel has made me weak and vulnerable. However I will continue to try my best.
This forum and the ladies on it have become my best friends. This is where I sought solace when I was at rock bottom. All
the supportive comments to each other have helped me find my strength, as we all share the same emotions and challenges. It has also been a source of invaluable information, especially during the time when I wasn’t getting any info from my first surgeon.
Sorry about the extremely long post, it’s been a few months coming 🙂. I wish I could give each and every one of you a big bear hug in person.
Lots of love to all Xxx
Mon
Mon
Tagged:
5
Comments
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Welcome to the forum!
A BC diagnosis is not easy to take in. Thank goodness you have found some helpful professionals who have instilled confidence.
Best wishes and take care and ask away2 -
You won't be the first to let it all out and you won't be the last...it's one of the things that makes the forum so important - the opportunity to let it go with people who get it. I honestly don't know how I would have gotten through as well as I did without the wonderful people here. Welcome @FLClover3
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@FLClover - Welcome to the blog, Mon - I hope that we can help you as you progress with your recon & recovery.
Once the words Breast Cancer are mentioned as being confirmed (I was SO SURE mine would be cysts!) it starts mucking with your brain too. Everything is such a whirlwind from the diagnosis to the surgery & recovery - then after pathology - on a roller coaster ride of treatments & options ..... We 'get it' cos we've been thru it. Some have more invasive surgery & treatments than others - but everyone is willing to help anyone else 'get thru it'.
Throw up any questions that you have - use the 'search' box on the 'discussions' page to cut thru to the posts that you need to read - and we'll do our best to give you honest answers.
Most of us have been 'misled' by health professionals in the past - by not being accurately advised of side effects etc of our treatments - but here, you'll get the 'real deal' & hopefully the support that will help you get thru this.
take care & all the best for your ongoing treatment xx
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@iserbrown, @Sister, @arpie thank you so much ladies! You’re all absolutely right. When I found out about this forum I didn’t want to join straight away cause it would have made it ‘real’, but at the beginning of my depression I called the helpline in my despair and talked (or rather cried) to Giovanna, who thankfully made me join. Since then I’ve been reading posts religiously, on all topics, every day, and have gotten so many answers I’ve needed. It’s also the only thing I could concentrate on when I was at my worst, everything else was too painful, even talking to my daughter. So yes, I can’t stress enough the importance of this blog. Because it is truly the one place where people completely understand. I even got referred to my new surgeon by a lady on this blog, which changed everything for me for the better. So thank you once again for the support, and I will def be asking questions about treatment and recon as they come up ❤️3
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Hi and welcome very sad you paid for such shitty service. It's quite normal to he informed if options and shown products and horrified you weren't given what should be normal practice. Thankfully you ate on tbe path now and feeling well supported.
We are here for you and our reconstruction group is invaluable with before and after pics
https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction
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@primek thank you, yes it is quite sad, considering we’re in a situation which requires extra care and information as we are at our lowest prob. It’s so hard to understand just what bc (or any c) can do to a person, how much it messes you up in every way til you don’t recognise yourself. Only the affected will know. I’m in good hands now thankfully. Thank you for the breast recon link, but I already joined a couple months ago and had a look at the pictures provided by those wonderful ladies. I had a look at yours too, which looked really good and actually convinced me to possibly go for implants, as after my mastectomies with tissue expanders, I was seriously considering just having them taken out and going flat. That group and the pics really helped. Thanks again ☺️0
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Hi @FLClover,
it's great that you found the second surgeon. Well done. It's hard to be assertive, and you did it despite feeling so low. I'm soon to stop Tamoxifen and start Zoladex and Letrozole. I agree, the side effects of treatment are hard to accept. So counterintuitive to take drugs that make us feel ill, which might help prevent recurrence...I find it hard to accept. Anyway, we can compare notes.
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@Dory65 Hello! Thank you, I’m glad too as it really helped. I hope it helps others too who might read this post and are not confident in their team. It’s such a hard decision esp in situations like this.
I have actually been following your situation because I knew I’d have to start Zoladex and Letrozole and you posted the same question I needed, so the answers you got really helped me too 😁😃. You’re right, it’s hard to accept taking something that will possibly make you ill when you feel so good. And the tumours are gone. But it is what it is. I’m trying to go with the mindset that everything will be fine 🤞🏼🤞🏼 and it will help in its own way. Good luck to us both and we should def compate notes 😊1
