Hello from Shells

For those wanting to share with others living with secondary or metastatic breast cancer.
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Traceylee
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Re: Hello from Shells

Postby Traceylee » Sat Jan 17, 2015 11:13 pm

Hi Shells
Sorry to hear about your diagnosis. I don’t come on here much but popped on tonight for the first time in ages and saw your post. It was like reading what happened to me I never got a lump, just out of the blue a hard thickening on the top of my right boob appeared and my nipple pointed down and quickly went inverted.

Went straight to the doc whom sent for a mammogram straight away which came back ok, I then had an ultrasound and a small lump was seen but not where I could feel.

Anyway ended up having a biopsy and was diagnosed with cancer, ever test I had got worse and worse until they told me it was advanced. My world came crashing around me, I thought my life was over but I’m still here just over 5 years later been on Femara the whole time and still haven’t had a sick day (touch wood).

You came to the right place, a lot of lovely ladies on this forum whom will be here for you whenever you need to vent. Good luck with your treatment.

Tracey xx
Dx 22/12/09, IDC Grade 2 and ILC Grade 1, 100mm RB, 13/21 nodes +, ER+++, PR+++, Hers 2-
Mastectomy 15/01/10 without reconstruction, Mets to Ribs, Internal mammary node and Supraclavicular node.

Tracey Gibney
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Re: Hello from Shells

Postby Tracey Gibney » Fri Jan 16, 2015 10:22 pm

Hi Shells it certainly takes a little bit of time for the ABC diagnosis to sink in but it does get easier with time. I was diagnosed with mets 7 years ago. I have been lucky that I have responded well to the antihormonals and radiotherapy. I have found the support here invaluable. It is great to actually met up in person, it can be a little intimidating the thought of meeting a bunch of strangers but you will be chatting non stop.
Tracey xx
EBC 94 aged 34. Mastectomy CMF, tamoxifen. Mets 07 brachial plexus, supra clavicular node, sternum. Treated with AI's Rads x3 Ooph 09. 2014 met to chest wall,surg, rads. 12/14 Multiple bone mets, rt axillary nodes further recurrence chest wall. Failed on Faslodex. 8/15 Ibrance

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Re: Hello from Shells

Postby chrismelb » Mon Jan 12, 2015 10:44 pm

Hello shells, I have been a long time member since 2006, starting with EBC but now well and truely ABC. It is so doable as Stage 4 and if it hangs around your bones and the hormones like them you'll be fine for years and years.
I am a memeber of a dedicated ABC private Facebook group where we really understand the ups and downs of ABC , being a step further along. Initially you may find it too much but we really understand. Many women have been at your status for ages. This is also a wonderful group, many of whom I call my friends and we are like a family who care about each other. We get together in Melbourne too and will be doing that soon also.
It is hard that u are getting so many ideas changing all the time but they really do decide as they go to get best outcome.
Re radiation, I had my first zap today after 12 years at this game. It was such a well oiled machine at Peter Mac down here in Melbourne I was very impressed. I felt nothing to day but I know it will become an issue eventually.
Good luck and PM me your real name for Facebook if u want me to get you in,
Christine.
Dx 9/03 EBC
5/12 ABC bones-Herceptin,Tamox&Zometa
8/12 Liver mets-Abraxane,Herceptin&Zometa
6/13 Xeloda/Tykerb Xgeva
11/14 TDM1 Xgeva
1/15 Rads to tumour in head
2/16 Whole brain rads lepto. mets, continue TDM1
8/16. Navelbine, Herceptin
1/17 Neratanib Xeloda & Herceptin.

ruth1
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Re: Hello from Shells

Postby ruth1 » Mon Jan 12, 2015 8:12 pm

I will send you both a private message with details - really pleased you are both interested. Look forward to meeting you both. e have a really great group of girls and always enjoy our lunches.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

Shells
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Re: Hello from Shells

Postby Shells » Mon Jan 12, 2015 7:54 pm

Hi Ruth / Quilla

Thank you, I would love to meet up with you ladies.
Diagnosed 5/11/2014 with ABC.

Lizzie
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Re: Hello from Shells

Postby Lizzie » Mon Jan 12, 2015 7:44 pm

Hi Ruth I am in sydney and would be interested in a get together . Its good to know how others have coped witht the same things

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Re: Hello from Shells

Postby ruth1 » Mon Jan 12, 2015 6:53 pm

Shells, its a difficult process to get your head around at first and there are differing opinions and so which add to it all and make further complications. Its also a time of a million appointments which all take time and make for stress and anxiety. Then of course there are side effects from the drugs to deal with too. There is a time when it overwhelms you but it does clear and becomes manageable.

As Quilla suggested - us Sydney girls meet up every few months for lunch so we can have a laugh, a gripe and whatever else. We do this at the restaurant at Centennial Park and we have one happening in a couple of weeks so if you feel you might like to join us please message and I can give you the details. Would love to meet you.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

Shells
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Re: Hello from Shells

Postby Shells » Mon Jan 12, 2015 6:14 pm

Thanks for the warm welcome!

It helps so much to know you are not alone.

The diagnosis is a shock and I found all the differing opinions from the Oncologist, the Surgeon and the Radiation Oncologist keep on changing and confusing things. I have just had a appointment that had no bad news. I t seemed that every appointment I have had so far just made it worse and worse.

I had no significant lump as such, just noticed my left breast did not go soft after my cycle and my nipple was pointing to the floor. I went straight to my GP that morning and that's how it all started Nov 5th 2014. Wont ever forget that date!

My treatment at this stage consists of monthly Zolodex and Xgeva injections and Femara daily.
Not too many side effects as yet but have only had 2 injections and on my first week of Femara.

Awaiting an appointment to see a Neurosurgeon to ensure my spine is stable and then can start Radiation after that.
At this stage the Oncologist wants to hold off on surgery to remove the lump as he wants to use this as a gauge to see whether the medication is working.

It seemed to take forever gathering all the information about the type of cancer and where it had spread to.
Currently it is DCIS, Lobular, Lymph nodes and in my C2, T2 and L7.
Hormone positive. Her 2 negative.
Not sure I have the abbreviations correct, though am trying to understand what it all means.

I am sure I will have a heap of questions to ask as this all progresses. Just don't know what to ask yet.
Diagnosed 5/11/2014 with ABC.

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Quilla
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Re: Hello from Shells

Postby Quilla » Mon Jan 12, 2015 3:07 pm

Welcome to the club no one wants to join!

Glad you have found your way here, I am not a prolific poster but I agree it is a wealth of information and brings you into contact with some very amazing people.

I get where you are coming from with your diagnosis as I am the same I was ABC right from first diagnosis.

I see you are from Sydney you may like to come to one of our lunches, in addition to the support of the forum meeting others in person is wonderful too.

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Janette
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Re: Hello from Shells

Postby Janette » Sun Jan 11, 2015 10:57 pm

Hi Shells,
Welcome to the forum and thanks for your introduction. You must be so overwhelmed by your diagnosis. EBC is hard enough. At least with BC there is a lot of research, and new treatments

The forum has been going for 9 years, so there is a wealth of information that our wonderful members have shared with us in the past and for those diagnosed in the future.

There is lots of support here, so please keep in touch. :grouphug:
Janette


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Re: Hello from Shells

Postby The new girl » Sun Jan 11, 2015 10:30 pm

:wave: hi shells,welcome to the forum,so sorry to hear of your diagnosis,it must be such a shock to you,how are you coping with treatment/meds keep in contact shells,your not alone we support each other :hugs: ....Rosa

ruth1
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Re: Hello from Shells

Postby ruth1 » Sun Jan 11, 2015 7:06 pm

Shells, this forum is a huge help to all of us - EBC and ABC. You must be in shock with being ABC from the start. here are you up to with treatment?

You will get used to navigating the forum and then its easy to access all kinds of stuff - I have used it daily for the past couple of years.

I have made some very good supportive friends through this and feel very fortunate to have received help when I needed it. As you say its so important that we all contribute to help those newly dx'ed
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Hello from Shells

Postby jezza » Sun Jan 11, 2015 7:00 pm

Hi Shells...pleased to meet you and welcome to the forum! Tough being diagnosed with ABC from the get go.

A very very steep learning curve for you. The last couple of months must have been overwhelming for you....so hard to take it all in.

Please ask anything here...what is your treatment and how are you handling it so far?

Nice to see you posting...

jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

Shells
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Hello from Shells

Postby Shells » Sun Jan 11, 2015 5:53 pm

Hi Ladies

Just want to pop in and say hello :wave:

This is my first post.

I was diagnosed in November 2014 with ABC (first diagnosis after I felt a thickening in my left breast) and am slowly getting my head around all the info.

Having read through some older posts, you guys are a wealth of information and I thank those who contribute so people like myself can learn more about abc when our heads are spinning from medical visits.

Shells
Diagnosed 5/11/2014 with ABC.


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