Hoping the surgeon is right

Makday

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!

DebbieMc

@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.

~Millie~

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

Thank you for the replies @DebbieMc and @millie. 

arpie

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

lrb_03

Hi @Makday, I've sent you a personal message

Makday

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

arpie

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!    

Makday

Yep, Fly Fishing Friends! 😊

iserbrown

Best wishes for the Oncology appointment. My surgeon had said I'm sure you won't need chemo but that's the Oncologist call.  He was right! Hopefully your pathology reports gives the same result.
As to the Breast care nurse some have a large number of patients. Mine was through my surgeon and extremely helpful. 
Take care 

Sister

@makday I started with a wide excision as it was thought that the lobular cancer was small and had not spread.  That would have meant rads then AI.  The path report came back as much larger and 3 nodes involved.  This meant that I needed a mastectomy and axillary dissection, and chemo was added to the treatment regimen.  I didn't actually find out that I was Stage 2 until after active treatment.  It's not really unusual for treatment plans to change after surgery, once the path report is back.  Take care.

Zoffiel

@Makday fingers crossed for you, but I think it is wise to acknowledge that recommendations for treatment may change. I've had two experiences where the surgeons opinion was very different from the oncologists. 
If that does happen, there are tests available to help determine how useful chemo might be. Sometimes the percentages for  a better ten year outcome can be tiny, as Millie pointed out, so those can be tough decisions to make. Hopefully you won't find yourself in that situation.
What a pity you aren't getting much value out of your breast care nurse. The quality of that service seems to vary widely, perhaps that's down to workloads or the personality of the staff. The two BCN here have been around for over a decade and they are absolutely fantastic, which has been a huge help over the years.

Justtoomuch

Hi @makday. Congratulations on having the surgery behind you. I had one appointment with the BCN before surgery then had a different one come check on me in recovery. Both were lovely and gave me their contact details. As I went overseas within 2 weeks of surgery I did contact them via email a couple of times and got very quick replies. I keep fingers crossed that you are able to avoid chemo. Take care of yourself. 

CathyMac

@Makday I'm sorry you've had to join us here, but it's a fantastic place to be for advice and support.
I was diagnosed with high grade DCIS and invasive ductal carcinoma in November 2018.i had a right side Mastectomy at the John James hospital in Canberra and am having my treatment at the Canberra region cancer Centre at the Canberra Hospital. They have been fantastic! My treatment schedule is 16 doses of chemo. 4AC followed by 12 paciltaxel. Today I had my 3rd paciltaxel and all is going well. After my chemo treatments are finished I will have 5 weeks of radiation. Who was your surgeon? Let me know if you would like any further info re the Canberra Hospital. I'm more than happy to impart any knowledge that may help.
Take care xx

Makday

Hi @CathyMac, lovely to hear from you, my appointment went well yesterday, and yes, the staff are really great. My surgeon was Collins, he carried out the surgery in bega but works out of Canberra private also. I have been offered to participate in a trial, much reading to do and pending results of blood tests and appointment with medical oncologist.  I won't need to have chemo, but will have 20 rounds of rads, feeling lucky with this treatment as I know many others, including yourself, have to go thru so much more.  I am fairly familiar with Canberra hospital as I spent the better part of last year caring for my daughter who was in and out of care , just all new with being involved in the cancer centre. Talk soon, and I hope your treatment is all going well.
Beth

marcel

Hi Makday,  I live in bawley point ( near you) and similar situation. I'm Stage2 invasive cancer with LVI . I've had part mast in late dec and finished 4 weeks intense Rad's in Canberra in march. I'm new to this network, so not sure, but if you want to chat, send me a private message.