“This sucks”

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Jenmcd
Jenmcd Member Posts: 3
Hi. This is a place I never thought I’d be posting in but thank you for allowing a safe space for me to just pour it out. 
I am 54 yrs and am now one week post op (partial mastectomy and nipple removal RHS, sentinel lymph node removal and bilateral breast reduction/reconstruction) having been diagnosed with high grade DCIS with Comedo necrosis on 12/2 and then following MRI, invasion into right nipple. 
What a mind blow out the past 2 months since my routine screen on 5/1 has been. Not telling you anything new as you all have been through this is some form of another. But no symptoms to “you have early breast cancer” has been a surreal trip. I don’t feel sick (well I do now post op!) so how is all this happening to me?! 
I am a psychologist and I know I “know” all the strategies to “ manage the anxiety” and “ one step at a time” and “ don’t let your thoughts become catastrophic “ etc etc but I still feel quite alone on this a journey even with all the support of family and friends. So hence I’m reaching out here with my vulnerabilities. 
I see my surgeon today for post op check and discussion about treatment etc. They are talking about radiation therapy. I am also HER2 positive and so confused about what this actually means and have confused myself more reading discussions on here. I have my questions ready to ask today as I’ve read HER2 positive requires Chemo? 
Anyway, just wanted to introduce myself and have say hi and what a shitstorm all this really is and how I am thankful that I was told about BCNA. 
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  • Mareealso
    Mareealso Member Posts: 34
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    Hi Jenmcd, welcome to the Shitstorm! This is a good site particularly if you connect with someone with a similar diagnosis - I think the saying is “problem shared is a problem halved”… or something like that. Now that you are in the health system (patient), things go at their own pace and that can be hard to accomodate but you will adjust. One of my tumours was DCIS but it was the smaller one so my treatment was aimed at the other tumour (invasive) so I can’t really share treatment plans either-sorry. I’m just letting you know that there will be someone with more knowledge of your tumour type along on here soon so know that you are not alone.. but do feel free to vent anytime!!
  • Blossom1961
    Blossom1961 Member Posts: 2,430
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    Hi @Jenmcd I was 56 when I was first diagnosed. I am also Her2+. I had AC chemo followed by paclitaxol and then a mastectomy and anx clearance - right side only. I then had twelve months of Herceptin but no radio. Everyone is different and only your medical team will be able to talk to you about what treatment is right in your situation. Ask every question you can think of and record or write down the answers. We will give every answer we can but are limited without the medical knowledge, doesn't stop us sharing what we can though. Most of us have found our heads are messed with even more than the cancer. Diagnosis and treatment sent me a bit loopy, well more than I already was. 

    All the best with your appointment today. Sending big hugs your way, I am a big hugger.
  • Cath62
    Cath62 Member Posts: 1,365
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    Sending lots of love ❤️.  
  • Afraser
    Afraser Member Posts: 4,392
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    Hi @Jenmcd

    I too had A/C and paclitaxel, but I had surgery (a single mastectomy) first. I had Herceptin for a year, with no side effects that I am aware of (11 years post diagnosis). Like @Blossom1961, no radiotherapy. Chemo was quite manageable (I worked throughout) and it’s hard to know how it will affect you until you start. Like many, I experienced some uncertainty about how to think of myself (as normal? As a bit of an invalid? Changed?) and a short time with a really good counsellor was invaluable. In the last decade I took on a challenging work role (in my 70s) and travelled a lot. Cancer is a frightening illness but treatment gets better and more focussed every year. Look after your head as well as your body and it can (almost) be educational!
    Best wishes. 
  • arpie
    arpie Member Posts: 7,803
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    @Jenmcd - welcome to the club you never wanted to join .... whack up any queries or vents & we'll do our best to smooth your journey xx.  Make haste slowly as you heal from your surgery .... do the exercises as described (and don't add extra ones for good measure!  Overdoing it can cause setbacks.)

    Being a psychologist yourself, you'll no doubt 'think' that you'd be better at handling the diagnosis/treatment, as you've probably helped others before, with theirs.   But sadly, it doesn't always work like that.     This disease really mucks with your head even more than your body, I reckon, as @Blossom1961 said.  

    If you can, take the time to listen to the Charlotte Tottman Podcasts on her BC 'journey' ... she is a BC psychologist who had a double mastectomy (choosing to remain flat) in 2018 - so she totally 'gets it' ... and her podcasts are really helpful.  She has a very easy to listen to & natural delivery .... click on this link & then click on 'view all tracks' .... You can start listening to No 13 - D Day (the first episode of the first series)  or you can also pick & choose which ones you want to listen to, in any order .... (see the newspaper article on her at the bottom of the post for more info on her.) 
    https://soundcloud.com/search?q=charlotte tottman

    Have you been assigned a Breast Care Nurse yet - they can also be very helpful with any queries/vents you may have, too? xx

    Take care & all the best for today - hopefully once you have your 'game plan', you will feel more settled. xx. I remember the huge relief I felt after my surgery, just knowing 'the beast' was GORN! :wink:  

    Consider recording your team meetings on your phone, so you can go over it again later, at home.  It can be difficult to remember everything that was said at the time - so having the recording as 'back up' is handy.

    We have lots of other areas on the forum that you may also be interested in - art & craft, garden, pets .... it is all part of the healing process.
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    take care

  • Tri
    Tri Member Posts: 69
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    Hi @Jenmcd
    I hope the post op meeting went well. My heart goes out to you for such an unwelcome and hectic start to your 2024. Congrats you have done well to jump on this forum - I am relatively new and stand in awe of how supportive, wise and informative so many of the contributors are. 
    I am HER2+ too although my breast cancer type is invasive lobular cancer which (unusually) showed up as a 3 cm-ish lump. I gather the drug most often used to treat HER2+ is one of the differentiators - it’s called Herceptin. Apparently it is very effective and targeted at eliminating HER2+ cancer (based on trials).
    I did not have surgery at first. Instead I had targeted chemo and immunotherapy (including Herceptin and another targeted drug called Perjeta) -  6 doses.  During this period of 4 1/2 months my tumour shrank, but not completely. I had a lumpectomy, then 15 sessions of radiotherapy. I am now finishing 11 rounds of chemo and targeted immunotherapy.  If there hadn’t been cancer cells present in my surgery pathology samples then the regime would have been 11 rounds of Herceptin only. Happily I am nearly finished this part of my treatment. It’s been about 14 months in total and an incredible experience.
    @afr@Afraser said - treatments get better and more focused - and that’s a point I thought about a lot, especially with HER2+ and Herceptin: so many women advocated, agitated and participated in trials and this made my experience so much more manageable and easier. 
    This forum is incredibly useful because of the diverse responses to treatment and how they impact us - I stayed engaged on a very part time basis with my work. 
    I hope this outline is helpful and I am happy to chat further about my HER2+ treatment if you have any burning questions. I hope your treating team meetings go well and am sending you lots of warm wishes. 
  • arpie
    arpie Member Posts: 7,803
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    Once you have your 'game plan', you will feel a lot better.    Yep - Keep your pain meds 'up to it' so the pain doesn't break thru as it is more difficult to stop it once it starts - better to minimise/stop it in the first place.  ;)  Sometimes, even setting the alarm to take it during the night too, so the dose is maintained.

    There are some great shows on Netflix to binge watch, if you like ;)  ... Also iView, SBS on demand & the other 'catchup' channels ..... or just do ANYTHING that keeps your brain busy - it will help!

    Doggie snuggles are special - they will be aware that you are a tad vulnerable just now xx

    take care & all the best with the treatment decisions.
  • Tri
    Tri Member Posts: 69
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    @Jenmcd thanks for the update! I hear you, I found waiting a challenge ☺️ and I think we’re not alone. 
    Having a dog’s companion is a good distraction - lucky you! All the very best with healing. 
  • J-Nold
    J-Nold Member Posts: 17
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    Hi,
    I’m sure you’ve had lots of great advice- haven’t read every message- but I wanted to support you in being a health professional, trying to deal with your own health issue- when it’s your job to help others through theirs. Surreal, right? 
    I’m a gynaecologist and often see women with cancer- so have tried to reframe ( as your lot say) to see that I’m so lucky to be in a position of knowledge and power. Just about everyone says that the diagnosis hits them like a train. I was okay with it- sort of knew what to expect and found the surgery side pretty straightforward. 
    So, I hope for you, you can find your training and knowledge kicks in and helps your mind when it needs to; you may even have time for mindfulness meditations while taking a post- op break, as I have. You are blessed to have that background and training. 
    But saying that- talk to a psychologist if you have a chance as it’s so helpful. 
    I really liked Charlotte Totman’s podcasts too.
    All the best and I hope the next stages go as well as can be for you. 

  • Julez1958
    Julez1958 Member Posts: 1,177
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    Hi @Jenmcd
    The Dr Charlotte Tottman podcasts will no doubt resonate with you - she too found it was only by experiencing cancer herself that she truly “ got it”.
    We have all found our own ways of coping but I personally  have found this forum invaluable .
    seeking professional help is also an option , the other thing we find is some people will  disappoint us ( do they think cancer is “ catching”?) and others will really “ step up to the plate”.
    Take care🌺