Another new member...

Hello @Daisyday you could call Cancer Council Queensland on 13 11 20 as they would have a listing of breast cancer support groups in your area.  All the best

I have been speaking to a McGrath nurse which has been helpful but unfortunately she doesn’t know of any support groups or people I can talk to in my area. It’s surprising that there’s not an active group on the Sunshine Coast but I’ve also googled and can’t seem to find anyone.

I’ll definitely ask about the Mepitel tape when I go for my visit with the radiation oncologist. I’m back seeing my surgeon for a checkup tomorrow as it’s now been two weeks since my surgery.

Talk soon, x

@Daisyday Great to hear that you have avoided chemo & you have a direction now. I didnt have chemo either but had rad treatment for 3 weeks. Like @arpie mentioned, i used Mepitel film & breezed through that treatment with no side effects or redness/burning/peeling. Its a GREAT invention so please ask if you can use it.
i hope you have found a support group. I found a McGrath breast care nurse an enormous source of help & support. I went onto the website & found the nearest one to me & then emailed her to introduce myself plus I emailed her all my pathology/doctors reports so she knew what I was dealing with. They are so well trained so can answer all your medical questions plus provide emotional support for you & your family.
All the best. Love & strength xx

Like you, @Daisyday - mine was missed by my mammogram just 4 months prior to my GP detecting it!  I was also out of pocket bigtime for my private surgery (about $6000 all up as lots of gaps in other areas, including my pathology! But I had a terrific surgeon & very little disfiguration) and then had rads in the public sector, for no cost!

I also have a 20 year history of arthritis & found that both Letrozole & Exemestane made it worse - and am please at finding Arimidex to be much 'easier' for me.  Are you relatively active?  Keeping on moving helps relieve some of the pain, even with arthritis!

All the best xx

Hi Annski,

I’m certainly using the public system for my radiation as have already spent about $3000 on out of pocket expenses - cancer certainly isn’t cheap!

Despite having had a mammogram last year, my cancer was detected on a heart scan just over a month ago. If it hadn’t been picked up, I’d be facing a far different scenario given it was Grade 3.

Unfortunately, it was a couple of days before my 60th birthday when the doctor called with the results so in addition to planning my party, I was googling surgeons. So, you can appreciate the past weeks have been crazy but I’m lucky to have had surgery and now seen an oncologist within a month of being diagnosed.

Apart from my heart issues, I also have chronic arthritis which has been so much better since moving to the Sunshine Coast so I’m hoping the side effects of joint pain doesn’t mean it will return. Still, it can’t be any worse than the effects that chemo may have had on me.

Good luck with your continued success and thanks for sharing with me.

Elenore/x

Hullo @Daisyday, I'm glad to hear that the decision has been made and that you will have a management plan which takes into account all your issues.  I had several reasons for not wanting chemo when I was diagnosed in November 2017, I was 72, I have recurrent long QT syndrome ( a heart arrhythmia) and  had had three unrelated surgeries in the previous few years. All the same, my tumour-load was large and I had 9/20 affected lymph nodes, two of them with extrusion (i.e. the cancer cells had already extended out from the nodes). On the other hand I was HR and PR positive, HER -ve and my Pi67 was only 16. So it was a bit of a tough call. I had mastectomy then surgeon and two oncologists said I should have AC+T, but a radiation oncologist (a top specialist) disagreed and said chemo didn't work so well on older women and radiation and Femara (Letrozole - an AI) would probably be preferable given the other co-morbidities. So I said no to chemo and have never regretted it. The surgery was fine, I've managed the lymph issues fine (with the help of a great oncology masseuse), the radiation was a bit of a struggle but manageable and I have only minor problems with the Femara. I'm two years on and doing very well apart from some emotional stuff which the cancer has brought to the fore. I may have lost 3-5% statistical life expectancy but the quality of life at my age feels so much more important. And I am sure you will do well too. Yes, it's still a hard road but you will get through it. Side effects may be very few and the overall management of your whole body/health/spirit is the thing to focus on. However you do need to follow up and advocate for yourself - the new cancer centre sounds good but they will only contact you if your oncologist/surgeon has arranged it. So don't be shy about asking what is going on. These first weeks are the most traumatic. Also don't forget that you can have public treatment for your radiation which is exactly the same as private treatment and free, so don't sign up for that with a private provider. Thinking of you and hoping all goes fine with this next bit, Annski.

Oh thanks for that, I’m still nervous about the road ahead but am encouraged to hear Arimidex works for you as I’ve read quite a lot about side effects.

I’m very fortunate that a new public hospital (with a supposedly very well-equipped) cancer treatment unit has opened up 10 minutes from where I live on the Sunshine Coast! Fingers crossed, they get in touch soon and I can plan my next steps, x

Woohoo!!  That is great news, @daisyday!  I avoided chemo & ended up on Arimidex (after trying Letrozole & Exemestane first - Arimidex suits me fine just now!!)

Depending on your surgery, many don't find radiation 'too bad' - so long as you keep the lotions up to the area & if noticing any 'overly red or sore bits' let them know the same day!    Mepitel Skin can be used to prevent burning, depending on what area is being treated ..... ask the Onc if it will suit you.

Do you have a nearby facility for the radiation, as it is daily treatment - I didn't fancy a 1.5hr return trip every day so I stayed on the hospital grounds for the 4 weeks in their Rotary Lodge (accommodation for patients & their families - going home on weekends) so it was a bit of a 'holiday' too!!  It was subsidised by IPTASS in NSW too - so not expensive at all.

All the best for your ongoing treatment xx

Great news...I’ve avoided chemo! The oncologist has recommended radiation followed by Arimidex as believes this will be as effective as chemo and won’t be as bad for my heart.

I’m so pleased and know there’s still a difficult journey ahead but thank you all again for your support over my very anxious weekend.

xxx

Thanks to everyone who’s responded, it certainly helps to feel you’re not alone. I don’t think any test sounding like this one has been done as nothing is referenced in my results. I’ll ask the oncologist tomorrow and also raise the issue of the Oncotype test but would have to weigh up the benefits given the cost.

Fingers crossed, I might be advised to stick to the plan of radiation and hormone treatment 🤞