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Active Treatment Over – waiting for 1 year check up

KarynJKarynJ SE QldMember Posts: 193

My name is Karyn and was 45 years old at time of diagnosis (now 46) in February 2018.  It was a full on, high octane, hurry up and wait time of about 6 months until I was declared in remission in September 2018.  I don’t think I’ll quite believe it until March when I have my first mammogram and ultrasound.

I’ve read other stories here at BCNA and my heart breaks for everyone who has been given this diagnosis.  I’ve read about women having to put holidays on hold and cancelling exciting events.  The irony of my story?  I had to put elective surgery on hold to have an urgent lumpectomy.  Can you imagine?

I was diagnosed during a routine annual mammogram.  My GP insisted that I should start having exams at 40 years instead of waiting until 50.  Actually, the mammogram didn’t find the tumour, neither did the specialist during the physical exam.  I certainly hadn’t noticed it.  It was the ultrasound that found the little aggressive Grade 3 invasive carcinoma.  I’ve had a history of cysts so I was lying there, daydreaming and finally thought, this ultrasound tech is taking a long time and a lot of pictures.  Still didn’t register – I assumed another cyst.  The specialist reviewed the ultrasound and I was zoomed straight back into the room for a core biopsy.  She said, it’s 100% not a cyst, 99% likely something bad but whatever it is, you’ll need surgery to remove it.  She phoned less than 24 hours later to tell me, yes, it’s cancer and go to my GP for further referrals.

I was surprised but not particularly shocked even though no one in my family has ever had cancer of any kind.  But I do have a list of other physical and mental health issues a mile long so adding cancer to the mix was kind of like “when” will it happen, not “if” it was happen.  The same day I got the phone call, I also had a regular appointment with my endocrinologist.  When I told him about the BC, he said, we need to get you on insulin injections as well as your current oral meds to keep your diabetes under control while you go through treatment.  I think I was more depressed about the injections – knowing that I’ll be doing that for the rest of my life now.  At least some cancers are curable.

I went through the public system for the lumpectomy and 20 doses of radiation.  I started in the public system for the medical oncologist but I wasn’t happy so I’m now seeing a med/onc privately.  It was thought that chemo would not bring me much benefit – maybe 1% over 10 years from 96% to 97% survival rate if I had lumpectomy and rads.  There was no evidence of cancer outside the tumour and nothing in the sentinel node.  Given I have such low tolerance to medications and so many other co-morbidities, I live alone with no one to help me and knowing that I’d suffer dreadfully from side effects, with full knowledge I made the decision to not have chemo.  I can live with that decision without regret.

The lumpectomy was in March 2018, radiation May/June and in July I had a huge operation – hysterectomy, oophorectomy and bladder sling sheath(20 years of incontinence issues).  The hysterectomy and bladder sling sheath were the elective surgeries I had planned for March but had to be put on hold.  My cancer is 80% ER+ve so when the doctors found out I was planning a hysterectomy anyway, they recommended I should have everything removed, hence the inclusion of the oophorectomy.  The pain of that operation still haunts me – huge open abdominal wound and days of agony because they couldn’t get my medication right.  Recovery took a long, long time.

It also meant that I was able to start on letrozole straight away and avoid the tamoxifen.  It’s been about 4 months on letrozole and I think due to the cumulative effect, the side effects are hitting me now.  The med/onc said this could happen.  Some women feel the side effects straight away, others it can take up 6 months to come on.  I’m prone to a lot of inflammatory conditions (diabetes, tendonitis, plantar fasciitis, bursitis, dermatitis, epicondylitis, IBS) plus joint and muscular issues.  So it’s no surprise that now my wrists, elbows and hands are really hurting.

I stopped working in March and returned on a graduated work program in October.  I’ll be back on full hours in 2 weeks.  My manager and co-workers have been very supportive and will do what they can to make things easier.  My family, on the other hand, have offered physical support (e.g. cooking, laundry for a few days after the 2 surgeries) but pretty much no emotional support.  My mother came with me to an initial appointment with the surgeon.  Her only question was, should Karyn’s sister have a mammogram too?  Way to support my illness, Mum!

My main issue at the moment (besides the joint pain) is the scanxiety for March.  I have PTSD (unrelated to the cancer) so I already have issues with anxiety, depression, emotional regulation disorder.  This is just another ingredient to add to the mix.

Anyway, that’s probably enough from me for now.  My hope for everyone is that today is just slightly more bearable than yesterday with a little hope that tomorrow may bring something better.


  • arpiearpie Mid North Coast, NSWMember Posts: 6,247
    Hi @KarynJ  - welcome to the forum - golly gosh, you've been thru a tough year!!   I am thinking you'd be very happy to put 2018 behind you now!

    I was like you (just 20 years older) .... no cancer history in the family, a history of cysts and Mammogram didn't show it up either - my GP found it & core biopsy confirmed it - so it was a real bolt out of the blue.  

    Scanxiety is totally normal as you approach your 1 year check up, but try not to let it take over - keep as busy as you can with work and activities that you love, to keep your mind 'free'  .... Fingers crossed that all goes well for your scans ..... the waiting afterwards is always the worst part of it tho.  :(  

    Sadly, the aches & pains with Letrozole and other AIs is quite common ..... so hope they don't get worse for you.   Shame your family hasn't been there more for you - but that is beyond your control - so try not to worry about it too much.   Great that your work has been so supportive tho. 

    You've done all the hard bits ... it should all be easier from now on

    Take care, thinking of you xx
  • KarynJKarynJ SE QldMember Posts: 193
    Thanks @arpie. It was certainly not how I had planned that 2018 would pan out.  Quite a different direction.  Best wishes to you.
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