Forum Discussion

Makday's avatar
Makday
Member
7 years ago

Hoping the surgeon is right

Hi all, it's been 6 weeks since my formal diagnosis of invasive lobular stage 2. I had a sectional Mastectomy 3 weeks ago and am recovering well, back at work full time, must keep busy.
I am off to the oncologist Monday, my surgeon, whom is excellent, has suggested that I will most likely need radiation therapy followed by hormone therapy, has anyone else been told this then had the oncologist change the treatment to chemo?
Has anyone had experience at Canberra hospital oncology department?
And just one more question.  I have had one visit from my BCN before surgery and one 5 minute phone call since, is this normal? I thought there would be more interaction!
In anticipation of your replies!
  • That is terrific that you are able to stay with your daughter for your treatment period @Makday  - it saves you having to travel all that way 2hrs each way, every day!   I live on the coast & went to Port Macquarie for my Rads, staying at the Rotary Lodge there for the 4 weeks, to save the travel as i am the family 'driver'.  

    It was wonderful - a Motel atmosphere with a lovely big shared kitchen & 'lounge/puzzle' area and run by absolute angels!!  

    Definitely look into the Otis and Fly Fishing opportunity - once you've learned, you can use it for Salt Water fishing as well  .... I am better at it at Salt water than fresh water!   
    https://www.castingforrecovery.org.au/whoweare/aboutcfr

    Then, when you come to the coast for a holiday - we can get together & give it a go!   :) 
  • Hi @arpie, my BCN was so good at her visit, I am hoping she is ok......my treatment, if rads will be in Canberra, 2 hrs from home, luckily my daughter lives there so I have somewhere to stay, and the company I work for have an office there also, just another bonus in my not so lucky diagnosis.....not looking forward to being away from home because had to do it for the better part of last year due to other issues with my daughter.
    I have had a quick look at otis foundation, will hopefully find somewhere at the end of treatment. Ooohhhh, fly fishing....would love to learn, will need to chase that up. xx
  • Well done on your recovery from surgery & returning to work!  @Makday   Yes, it is good to be kept busy.

    I had Stage 2 but got away with a Lumpectomy and immediate reconstruction, clear nodes.  Followed by 4 weeks radiation & then AI/Hormone therapy.  I was lucky & dodged the chemo train.

    Re your BCN interaction ..... I had stuff all!!  My surgeon's nurse was my main contact & she didn't get back to me very quickly at all, if at all, to be honest!  I found most of my solutions here!!

    @rose@CathyMac@Emim and @Cruiser are a few of our Canberra members - hopefully they'll be able to help your your Onc query.

    Check out the Otis Foundation as well, for a 'break' after your active treatment has finished!   I am going to the Snowy's at the end of April for 5 days!!
    https://www.otisfoundation.org.au/directory

    If you are into fishing at all - the Fly Fishing community in Canberra also does free weekends for learning how to Fly Fish!

    All the best for your ongoing treatment xx


  • Hi @Makday, my cancer was a bit different to yours, lumpectomy, clear nodes. My surgeon is highly respected and prior to surgery hoped I wouldn’t need chemo. Anyway, after surgery and the results she sent me off to a chemo oncologist. Basically the outcome of that expensive chat was, you probably don’t have cancer anymore, but can have chemo which might improve your 10 year outcome by a maximum of 2%. For many reasons I decided the potential maximum benefit of chemo wasn’t worth the known decline in quality of life. So, I just went with the radiation. My experience with the BCN nurses was similar to yours. I even rang them with a question, they suggested I come to the hospital, but I was in no condition to drive, and didn’t really have the emotional stability for taxis. Best wishes for you treatment. Xx
  • @Makday First of all I congratulate you on a diagnosis, an operation & back to work already after only finding out 6 weeks ago. I can only go by my experience 5yrs ago when I had a full mastectomy and the day before I went home my Oncologist came in & said I would need radiation but no chemo. When I went to see her post surgery a week later I said how pleased I was not having chemo & she reacted strangely, it turned out both my Oncologists were unable to be present at the meeting where my case was discussed & both disagreed with the verdict. So I ended up having chemo after all followed by radiation.
    She visited me practically every day in hospital, If BCN is a breast cancer nurse I apologise as I didn't really have one but saw one prior to going into hospital & was given some gifts post surgery.
    I hope you're doing well.