Recently diagnosed - Finally reaching out.

Dizee

Hi friends 
I was diagnosed at the end of September after my first ever mammogram. I had turned 50 in August & thought I had better have it done. What a shock it was. My tumour was 6cm & I had cancer in 10 lymph nodes. My surgeon said I would have had it for 2 years.  What the! Two weeks after diagnosis I had a left Breast mastectomy & 15 lymph nodes removed. It happened all very quickly for me, even though the waiting for results was the worst & longest times I had ever experienced. Oh, & telling my two daughters, that  was heart breaking. I am recovering well from the surgery, it will be 3 weeks this Friday. 

Up till now I have been in denial about the whole diagnosis. Or maybe I have just  been plain scared. Not wanting to branch out to you all for support. Silly me. After finally being brave enough to have a look at this wonderful resource we are on & reading everyone else’s journeys & support they have received, I am so annoyed with myself for not jumping on board sooner.

i had my first appointment with my oncologist yesterday, & I am starting chemo on the 13th November. The information overload I received yesterday was massive & once again reality hit me head on. 

I will be having 4 cycles - 2 months of AC (doxorubicin & cyclophosphamide) & then 12 weekly cycles - 3 months of Paclitaxel. Before having radiation therapy & then 10 years of hormone blocker drug.

i am giving the cold cap ago. Has anyone else tried it? Was it successful for you? I would love to know. 

I live in the north eastern suburbs of Adelaide - Dernancourt  if anyone knows of any support groups in the area it would be appreciated. 

Thank you for listening.

xxxxx

Giovanna_BCNA

Hello @Dizzee Thank you for posting, its a huge first step.  What a shock for you with your first mammogram.  You will find many supportive members here who Im sure will respond very soon.  If you need to speak with a cancer nurse for information or support please call our helpline on 1800 500 258.  Wishing you all the best with your upcoming treatment,
kind regards

Blossom1961

Hi @Dizee and I am pleased you found us. There always seems to be someone who has gone through something similar. Many of the ladies, and some men, hop on the forum later in the evening so you will no doubt get more responses then. I wish I had joined up earlier than I did but my iPad wouldn’t let me in and I didn’t persevere, so well done on making the step. We have a few ladies in Adelaide so hopefully they will be able to help with a support group (although I personally think we are the best right here 😁). I am a big hugger so sending big hugs your way and know you are not alone. Any question or rant is welcome.

Afraser

Best wishes for your treatment. I had a similar regime although no radiation, herceptin instead. Now in my seventh year of letrozole (hormonal treatment). I am remarkably well. It’s all doable, especially when the chemo is over and done with. But similar treatments affect people differently (no real idea why!) so go into it as openly as you can. Cold cap wasn’t generally offered when I was treated but many network members have used it and can advise. Most important, remember that any treatment is for a finite amount of time, unpleasant side effects can often be reduced and when all else fails, you can always stop - some treatment is possibly still a lot better than none.

arpie

SO sorry to see you here @Dizee - but you are in the right place for support & advice, from those who've gone before you.   It is always such a shock - the diagnosis & swiftness of actions from there.

We have some wonderful ladies in SA @Sister and @Romla to name just 2 ..... they may be able to help you with local services/groups in your area.

All the best for your ongoing treatment xxx

Sister

Hi @dizee I am a fellow Adelaidean.  I know how the shock can be so overwhelming.  But you've started on treatment which always helps.  There is an Adelaide Breast Cancer facebook group if you're interested (and I think the moderator lives in Dernancourt).  Where are you having chemo?  I was at Adelaide Oncology (attached to Calvary) and tried cold caps.  Unfortunately, they didn't work well enough for me to continue.  Calvary have a rehab exercise clinic at Walkerville but there are others around, too (Lift at the Tennyson Centre comes to mind).  

Romla

@Dizee  I too am a fellow adelaidean and nearly 3 years post diagnosis, lumpectomy and radiation. I can’t help re chemotherapy but can provide bits and pieces of information that might help.

I think you closest support group might be this one according to Cancer Council SA website.

Adelaide Breast Cancer Friendship Group

Adelaide metropolitan area

A friendship group for women (and their loved ones) whose lives are affected by early or secondary breast cancer. We meet regularly across the Adelaide metropolitan area. New members are encouraged to make contact for details. Contact: Dianne Radloff 0402 233 329 or dianneradloff@**** There is much available in the community to support those undergoing cancer treatment including breast cancer.  1.There is the Otis foundation providing free holidays in non peak times to give families a break. 2. There is a hair and makeup seminar including wigs information called Look good Feel Better.It is free and you are provided great advice , a bag of top notch cosmetics matched to your complexion as well as a chance to meet others undergoing treatment. 3. The best thing for me was Encore the free 6 week hydrotherapy course put on by the YWCA for breast cancer people and there is a course not far from you. It also provide practical information eg swimwear , lymphodema , Otis. Bras etc plus a chance to meet others .Some people find it beneficial during chemo too. 4. Cancer council were great too arranging quickly a phone hookup with a past breast cancer lady who was excellent at a low point before I found my feet. It is tough when treatment all ends as we are expected to pick up our lives as before yet we are now different and unsure so it is important to have the reassurance we are not alone and to know that others are back enjoying their lives.  I also recommend strongly staying on the blog and participating .There are some wonderful people on here who can guide you as well as share thoughts and ideas with.The blog is up 24/7 as usually there will be someone online even in the middle of the night - there’s group of lovely people called nighthowls who have trouble sleeping at times.Also Christmas is coming up and it’s often difficult to get medical attention unless an emergency for a time but the lovelies on here are usually checking in here and are available to help.PS We also have some great chats and laughs - you are safe amongst friends who get it.I guess it’s odd to say but welcome.

Dizee

Hi everyone,
Thank you all so much for all of your lovely words of support, advice & knowledge. It Is great to hear everyone’s journeys.

Thank you to @Romia for your recommendation of the support group from the cancer SA website. I will make contact with Dianne Radloff. 

Thank you @Sister  for your msg. I am also having chemo at Adelaide Oncology out of the Calvary North Adelaide. It will be interesting to see how I go with the cold cap, I will let you know.  I will also follow up with the rehab exercise clinics. I think I will benefit from this. I will also check out the FB support group. 

Thank you to @Giovanna_BCNA, @Blossom1961, @arpie for your replies. It definitely feels comforting to feel that I have others I can talk to that have or are going through the same or similar treatments as me. 

I will be in touch.
xxx

Sister

@dizee If you're going to Adelaide Oncology, they also have a psychologist, nutritionist and sexual health doctor available and they usually do a session a few times a year about living with cancer diagnosis (or something like that - my memory of last year is a little unreliable to say the least).  @romla is spot on about the Look Good workshops - you can book online for them.  Encore seems to run with school terms so I expect won't happen until next year but worth contacting them through YWCA page.  If you do decide that the cold caps aren't for you, RAH volunteers run a wig library.

arpie

@Dizee  As @romla mentioned in her reply -  after all your active treatment is over (surgery, chemo, rads) - make sure you book in with Otis for a "family retreat'' - kind people with holiday houses make them available to Breast Cancer patients for a 'free holiday'.  I had 5 days in "Creekside" at Thredbo, Snowy Mountains earlier this year with my husband, brother & wife - it was just a fabulous 'break' from the 'norm'.  All you have to do is provide your own food & get there!  There are 4 properties are available for South Australia, 8 in Vic and others including a new one in the NT!  ..... So there is no reason you can't choose one interstate either - just being prepared to either fly or drive there!   
https://www.otisfoundation.org.au/directory


After my active treatment was completed, I also gave myself a Ukulele holiday to Norfolk Island!  A wonderful place just to relax!

All the best xx

kezmusc

Hi @Dizee,

Welcome to the forum lovely.  There's nothing on earth that can prepare you for that kind of shock.  It's good that you have a plan in place that first waiting game is just horrible.
My treatment was pretty much the same except lumpectomy and 24 nodes out.  The rest is exactly the same.  It's a pretty common cocktail.
I used the cold cap and it was brilliant.
The ladies, as usual, pretty much have everything covered.  I just wanted to say Hi and welcome.
You are in good hands here.  Always so much warmth and practical advice.
Best wishes
xoxoxoxoxo

Dizee

Thank you @kezmusc. If feels wonderful to know I’m not in this alone & know that I have support whenever I need it. Thanks again. ❤️

Anne65

@Dizee Welcome aboard!! I too am an SA girl. I live in the country but had surgery, rad & everything else that goes with it, in Adelaide. My in-laws actually live very close to you!!
I had surgery in St Andrews & rad at Calvary Central Districts & I cant speak more highly of them both.
I also had my diagnosis following my very first mammo & yes, it is a huge shock. I had DCIS that was caught early but it was aggressive so I thank god that I visited the mobile van that year & got it done. 
You have been given wonderful advice above my the other beautiful SA ladies. As for me, the SA help I received was from a McGrath nurse. I also used the Cancer Council SA phone line & undertook a program with them following my treatment called "Healthy Living After Cancer". Following on from the Adelaide BCNA conference a few months ago, I learnt of a wonderful business called Life Cancer Care situated at the Tennyson Centre. They offer 

Support services include Exercise Medicine, Physiotherapy, Dietetics, Speech Therapy,  Clinical Psychology, Psychiatry and Pain Management

I have recently contacted them & booked in for an initial lymphoma test to ensure I get myself monitored for any early signs. They have everything under the one roof to help you through every stage of treatment, during & after.
Good luck with it all & keep in touch. Wishing you love & strength xx