Forum Discussion

MvB's avatar
MvB
Member
7 years ago

Early stage breast cancer #4 (recurrence #3)

Hi everyone,
reaching out to find anyone in a similar boat which I call the SS "Lucky/Unlucky". 
I have been dealing with early stage BC for 18 years now since an initial DCIS dx in 2001 (1mm in size - picked up on my first ever mammogram at age 37) - had all the recommended treatment (lumpectomy x 2 for clear margins and then rads).  Since then I have 3 more re-occurrences - 2004 (1.5 mm, low grade, mastectomy no reconstruction), 2011 (in chest wall scar - lumpectomy and then 6 years of Armidex) and now late 2018 a 2nd chest wall recurrence.  Tumour is ER positive, PR negative, HER negative, grade 2, Ki-67 25-30% (high - although my new Oncologist suggests that Ki-67 is 'the least reliable' prognostic indicator.  UNLUCKY!!! Have never had any lymph node involvement or mets.  LUCKY!! 
Have had chest wall reconstruction surgery 3 weeks ago using a flap from my thigh - went very well with clear margins etc.
Differing opinions from the experts now about next steps.  Advised I should consider radiation (second time around as I had it in 2001 for DCIS), although have been warned about potential heart issues and chronic skin and bone problems. Have been told chemo is also something I should consider. I asked about the Oncotype DX test and was initially told it was not suitable for someone like myself for prognosis or treatment planning, but when I said I was planning to get it done anyway, it was suggested it COULD be used to work out if I would benefit from chemo or not.  Signed up for the test yesterday.  Best $5K I have ever spent - either way.  But I am very aware that not everyone can afford this and think it is a great shame that Australia is one of the few developed nations that does not support the cost of this via government medical programs (Medicare) or private heath insurance.  Will get the results week after next.  I clearly have something odd (lucky/unlucky) going on with my tumour type, and if I have to have chemo even though there is no node or lymphatic invasion so be it. I have never posted before because I don't want to frighten anyone with my sad story about recurrences - but equally, I figure now I am in some way a good story of how early detection, ongoing monitoring etc. has kept me going until now and hopefully for many more years to come.  I am back on Arimidex and my new Oncologist has indicated that I may need to stay on this forever - no worries!!
Have pretty much decided not to do radiation a second time as it seems quite dicey in terms of risks and rewards.  Anyone have any experience they want to share.  Love and best wishes to all on this forum.
Cheers
MvB


arimidex
early-detection
genomic-testing
oncotype
radiation

36 Replies

Sort By
Show More
  • MvB's avatar
    MvB
    Member
    7 years ago
    @melclarity I'll certainly post re. the Oncotype test result, and I agree that there is something going on here that is yet to be fully understood...as with pretty much all cancers.  I plan to also do genetic testing once all of the treatment settles down - so tired of schlepping to and from hospital and Drs appointments with my bag of scans!  There is a bit of a history in our family over the last 2 generations of early stage breast cancer which has been treated fairly aggressively (as was done over the last 30 years) and which didn't re-occur.  Or re-occured 15 years later...and then 10 years after that.
    It's part of why I want to do the Oncotype test (even though I understand it is a different type of test and outcome to standard genetic testing).  I figure there is a puzzle here to be solved.  And it seems sometimes even early stage DCIS tumours have a blueprint encoded that despite best efforts still see recurrences.  I have been running 10-20kms a week last 3 years and eat really well.  Hope to be part of working it all out one day! :smiley:
  • melclarity's avatar
    melclarity
    Member
    7 years ago
    @MvB ohhh roller coaster absolutely lol. I was on tamoxifen for 4yrs but that didnt do anything either. I think they are revisiting their approach for DCIS right now which is interesting. it will be super interesting to hear how you go with the Oncotype test in terms of making your decision, let us know. Certainly would help alot. I do believe that there are so many other genetic factors that they just havent uncovered yet, the Geneticist told me. So definitely had nothing to do with lack of exercise or diet that's for sure! Oh my bone density was diabolical after chemo unfortunately so that's why I was placed on it.

    Certainly interested to see how you go and your decision. Take care :) x
  • MvB's avatar
    MvB
    Member
    7 years ago
    Hey @melclarity, thank you so much for the fast response - wow, this community is amazing!  And thanks @Joannie for the intro.  @melclarity sounds like you have had your own roller-coaster to ride but I think getting access to hormonal therapy early is a great thing - particularly AIs once you are post-menopausal.  Best wishes for 2019, 2020 and all check-ups beyond!
    The Oncotype test will actually almost take the uncertainty away re. the chemo decision.  It seems to be a very robust test.  I am open to a high or intermediate/low score.  As I said, I think it is very sad it is not supported by government or other funding here in Australia.
    I appreciate your thoughts on radiation, and I am sorry to hear about your side-effects.  I didn't have any issues with radiation first time around, but I think Round 2 for me is not a good idea.  And clearly Round 1 didn't help much anyway. :neutral: But that said I know the statistics very much support Radiation as part of the treatment options first time around.  And I will find out more also about the bone density injections.  Sounds like a plan if I am to stay on Arimidex for-evah!
  • MvB's avatar
    MvB
    Member
    7 years ago
    Hey @arpie thanks for the response and best wishes for your own journey in all of this.  I'll investigate the CTC testing - sounds interesting.  I'm in Sydney and being treated for the last 18 years out of the Sydney Adventist Hospital (the San) in Wahroonga, where everyone has been amazing.  But I only last week was referred to an 'Oncologist' having previously been treated primarily by a very experienced surgeon and a Radiation Oncologist.  I have also been discussed a few times at Multi-Disciplinary Team Meetings over the last few years - but perhaps the decision to go off Arimidex 18 months ago wasn't the best.  But at the time the jury was still out on the benefits of more than 5 years - I think the verdict on this now is clearer.  My new Oncologist has been hit with a laundry list of questions given I have had the benefit of dealing with this for almost 20 years now...but even so my learning curve in the past few weeks has escalated as I have had to deal with not just the new recurrence but also so much more info and knowledge on BC types since the last time I had this 7 years ago...my Google searches have been going overtime! It is amazing how much more is understood but also how much more needs to be done.  As my surgeon said to me last week..."the understanding on all of this is shifting like the sands of the Sahara"...which is a perfect description.  And I am just trying to stay one step ahead of the sand!
  • melclarity's avatar
    melclarity
    Member
    7 years ago
    @MvB hey there! thanks @Joannie for the tag.

    What a story!!! gee!!! I've also had a recurrence but only once, my first diagosis was in 2011 DCIS, so like you very early, I had lumpectomy, clear margins and radiation then tamoxifen. 4yrs later I had a recurrence inspite of all that, in the scar tissue of the lumpectomy. So I had another major lumpectomy, clear margins, no node involvement either. Due to a recurrence though my tumor was 2.5cm within my 1yr visits and Grade 3 Stage 2, ER+ only, so I was automatic chemo in 2015. I did the BRCA gene testing and it was negative. So in early 2017 a year post treatment I had a single mastectomy and diep flap reconstruction. I've just been told Im entering into my 4yrs clear til my next visit in January 2020, so Im very happy as I didnt get this far last time. I was not recommended rads as I had it already and my Onc said they wouldnt give it to me ever again. 

    For me?? I wouldnt have rads again if I go down this path, purely because it didnt work and I was over treated, it has caused a cascade of problems such as heart palpitations in which I had to have an ablation done. Together with years of constant cramping in the chest front and back. 

    I'm on Aromasin currently so have been on an AI for 8 yrs now. I also have Prolia injections for bone density and this interacts with the medication giving extra protection. Thats been a god send in itself, Ive never been better, I have 2 specialists that can't speak highly enough of it.

    The Oncotype test isn't done as commonly here in Australia, so I haven't had that done. 

    It is a tough one, because you want to know the percentages for you doing chemo, I admit I didnt want to do it but I did. Faced with the decision again, and this is just for me...Im not sure I would, it is dependent on so many factors and I would have to be well convinced by those percentages.

    Being well informed is the best way to tackle it. Wishing you all the best. Hugs M xxx
  • arpie's avatar
    arpie
    Member
    7 years ago
    Golly Gosh, @MvB - you have certainly been thru the mill already.   I can't comment on your intended treatment as I am only 1 year out from my own surgery - but just want to offer support for you and your family. xx

    This latest occurrence must be so bloody annoying for you as well as worrying - but you sound amazingly resilient and upbeat.  Having the Oncotype DX test will help with your treatment planning.  It would appear that there is something (possibly genetic) happening behind the scenes tho.   Apparently Peter Mac Hospital in Melbourne does a testing called CTC (Circulating Tumour Cells) that could be worth following up?   Where abouts are you (City/town?) 

    All the best, take care & thinking of you xx