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

Sister
Member
7 years ago
Good luck with it @MvB
kmakm
Member
7 years ago
@MvB I get that. While I was shattered at knowing I was going to have chemo, I was never negative about it. The test said I should do it, and I did it knowing I was giving myself the best shot at surviving a long time. Well done. Way to keep your eyes on the prize lovely. K xox
MvB
Member
7 years ago
Hi everyone who has provided such great info, kind thoughts & wishes. I have had the results of the Oncotype test today. 38. High. Chemo is a good option. I am good with that. Start next week. Feeling strangely positive knowing that despite the high risk of recurrence, chemo will help.
Annie_C
Member
7 years ago
@melclarity
Thankyou for your positive reassurances. I had mentally prepared myself to be away from home for 4 to 5 weeks radiation and to have to disrupt my life every 6 months for checkups. Then it all changed. No radiation and 12 months checkups. Sort of threw me.

However having read others thoughts on radiation and through my own further research, I probably would have decided to forgo radiation. At least I have that should I ever need it.

As for the appointments 12 monthly will do. Going to Perth even with the assistance from our health department is costly for me. A week in Perth and I am usually out of pocket by a thousand dollars. That is more than I receive in age pension in a fortnight.

After the first mammogram post surgery (June last year) my thoughts were along the lines of "well that's over for a year", and got on with life.

@arpie
You are spot on. Thankyou. Again an insiteful comment on the realities of "bush" living. I love living in the Kimberley, however it may well have been romantic at 45, it is bloody hard work at 65 plus!
MvB
Member
7 years ago
Hi everyone, I think as I said in my original post I have stayed off on-line boards over the last few years (until last week) - mainly because I didn't want to worry everyone! :smile: For similar reasons I haven't participated in face-to-face support groups - being mindful that my "journey" has been both a negative one but also a positive one in that I have been able to stay free of (detectable) mets. But it will worry lots of people unnecessarily. If it helps reassure, all my recurrences were picked up via annual mammograms (for remaining breast) and ultrasounds of both sides OR via annual visits to my surgeon (who I used to see every 6 months but then it drops back to 12 months once we get past a few years - although almost every time it drops back to 12 months something happens! - it is a constant "promotion/demotion"!) I have also had at least four "false alarms" during these processes where I have been sent for further biopsies which then turned out to be negative. But I would prefer they were extra-cautious! I think the experiences of regional patients is clearly different due to cost, access and availability - and that is very sad to hear. Although I also had to wait over 6 weeks for surgery most recently due to lack of availability of surgeon and the plastic-surgeon (who was required for the (flat) chest reconstruction). Admittedly Xmas was also in the middle of this. So sometimes even in the city, with private care, you don't get what you think you might need! I think the lesson to be drawn from all of this is maintain your annual check-ups, check yourself as well (although I have always felt everything was so messed up with fibrosis and scar-tissue from radiation and surgery that I couldn't really tell what was what!), and have your annual checks mid-year to avoid the Xmas crunch!
melclarity
Member
7 years ago
@TonyaM thanks! it was a tough time, though my nose was pretty well mended at the time he passed away :( still getting used to it...though do we really? Im so sorry about your Mum, yes makes no sense at all does it?? I miss both my parents hardest thing ever to get used to. xxx

@"Annie C" I also think too it depends on your diagnosis and where you are in your path. I was only ever yearly til my 1st diagnosis, my recurrence was found at my yearly checkup in the scar tissue of my lumpectomy at the 4yr mark. My previous tests were clear, so in a year it appeared. Thing is they dont do any other testing in between unless there are major concerns. After my recurrence and having chemo, I then had to go to 6 monthly visits with the Oncologist and yearly visits with my surgeon purely to keep an eye due to my recurrence. I have now only gone to yearly with the Oncologist but he wasnt doing tests it was just a catch up at the 6 months. Living remote would absolutely have its challenges. I do know they are changing their approach with DCIS and how they treat it. xx M
arpie
Member
7 years ago
Sadly, remote & some regional patients are very much 'behind the 8 ball' of the assumed treatment of those living in major cities or towns. @"Annie C" would really be expected to move to Perth to access 'accepted top level treatment' ..... which is a huge decision to make,'in case' your outcome is going to be better than if you remain in your home town & do the distance travel required to see the specialists (or wait the many months in between their visits IF they go to your town) - and that is assuming someone actually wants to buy your property at a price you are happy with.

Some regional areas would be keeping up with the latest trends - I have faith in Port Macquarie Cancer Centre .... possibly less so with those that closer to my home - given that the 'local' MG and US radiographers didn't pick up my tumours after my GP had felt them. They suggested a biopsy as a 'perhaps'! I go to Sydney to get checked out by my Surgeon - 4hrs away - but at least I can drive & have family to stay with when down there.

Those in the bigger cities - please, never take your medical services for granted xx
Annie_C
Member
7 years ago
@Blossom1961
Thankyou for your reassurance. I really don't know what to expect as the advice and regime seems to change at each visit.

Originally I was advised every 6 months for 3 years then annually. After the first mammogram the appointments have become every 12 months with the advice to "see your gp if you are worried about anything".

I might add that my treatment was a lumpectomy only for a high grade tumour. Originally I was told that radiation would be needed. After surgery the breast surgeon said not needed. That left me floundering.

I have decided that my job is to stay well physically and emotionally and the medicos' job is to find the recurrence if it occurs.
Blossom1961
Member
7 years ago
@Annie C I am in a large regional city only an hour out of Melbourne. As I am on herceptin I see the Oncologist every six weeks but once that finishes I will be on a once every twelve months regime. Mammogram on good side, manual grope on the mx side. I thought that was normal.
Annie_C
Member
7 years ago
Hello @BlackWidow
I sometimes cannot help but think that because I am very remote I am very much an "out of sight, out of mind" case.

I read of others having appointments every 3 or 6 months, but all I get is a mammogram every 12 months.

I think it is due to the fact that the costs our health department incur to get me to Perth are very high.

When I mentioned the fact that my followup is only every 12 months the oncology clinic at a large city hospital merely replied that should a recurrence happen, they will find it!

A nurse at the same clinic stated that because I was so far away my care and treatment "is compromised".

Not much of a reassurance.