Just dropping in to say hello for the first time

For those wanting to share with others living with secondary or metastatic breast cancer.
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Tigger
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Re: Just dropping in to say hello for the first time

Postby Tigger » Fri Aug 14, 2015 2:51 pm

Hi. Sorry to hear that you have joined the "club" but it sounds like you are getting good care. My GP thinks everything is cancer so I have almost the opposite problem because some things he needs to treat but he tends to refer me back to my oncologist. He doesn't want to get anything wrong so that is good. Glad you found us. I have been away from here but finding I need that contact with people who understand. This is a great place for that and great people here :)

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mum2chloe
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Re: Just dropping in to say hello for the first time

Postby mum2chloe » Wed Aug 12, 2015 5:38 pm

Welcome :wave:
Dx July 2002 age 28. ER, Her2 pos 96mm tumor. 8/12 nodes.
Mast. Chemo AC & Tax,Rads, Tamoxifen & Zolodex,
Nov 2008 Oophorectomy, Arimidex, Femara.
Oct 2011 Recon surgery LD flap
May 2012 Dx Liver mets , 2yrs Abraxane & Herceptin.
June 2014 Aromasin & Herceptin

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Re: Just dropping in to say hello for the first time

Postby Kiwianna » Wed Jun 17, 2015 12:05 am

Hi Lesley & welcome to the forum! :D Sorry to meet you under these circumstances though! Perhaps you need a new GP? I am actually new to this forum too but I'm here to learn about this awful disease because my sister has it & I want to support her as best as I can - I don't actually have it myself though. I also live in Gippsland so look forward to getting to know you! :wink:

lesleyb
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Re: Just dropping in to say hello for the first time

Postby lesleyb » Mon Jun 15, 2015 11:24 pm

Yes Chris we are very lucky to be so close the Inegrated Cancer Centre here in the Latrobe Valley. Just 10 mins down the road. I have a good onco there and another in Melbourne as well just to keep everyone on their toes. Never afraid to get a second opinion when the onc wants to change my treatment which hasn't occurred as yet - touch wood.

Apparently that Maccas is one of the busiest in all of Vic. I wouldn't doubt it. I am quite overweight and I fit right in here in this neck of the woods. I look very normal. Must have something to do with all the busy takeaways around here. We visit very rarely though.

Lesley
Dx 2005 Grade 11 Er+/PR-/Her2-. Chemo/radio and arimidex for 5 years. Recurrence 2014. Stage 1V. Mets to mot of spine, sternum, 2 ribs, spots in lung and liver. Radiotherapy x 2 to spine. Current treatment - arimidex, Xgeva monthly.

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Re: Just dropping in to say hello for the first time

Postby chrismelb » Mon Jun 15, 2015 10:08 pm

Hi Lesley, I've eaten at 'your' Maccas many times!!! It is a very convenient half way stop on the way to Nicholson. Bloody GPs!!! They did the same to my mother but that was 30 years ago. Lucky you are there in Gippsland cos you are closer to the bigger hospitals, treatment and oncologists.
I was rediagnosed in 2012 so had a lot longer to get used to it.
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.

lesleyb
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Re: Just dropping in to say hello for the first time

Postby lesleyb » Mon Jun 15, 2015 1:41 pm

Thanks everyone for making me feel so welcome :thanks:
Dx 2005 Grade 11 Er+/PR-/Her2-. Chemo/radio and arimidex for 5 years. Recurrence 2014. Stage 1V. Mets to mot of spine, sternum, 2 ribs, spots in lung and liver. Radiotherapy x 2 to spine. Current treatment - arimidex, Xgeva monthly.

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Re: Just dropping in to say hello for the first time

Postby JudyB » Mon Jun 15, 2015 1:31 pm

Hi Lesley

Sorry your GP didn't get onto it quickly, I hate the idea of unnecessary pain! I do not have secondary breast cancer but welcome you to the forum as well, you should get great support here.
:hugs:
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Just dropping in to say hello for the first time

Postby Tracey Gibney » Sun Jun 14, 2015 11:37 pm

Hi Lesley welcome to the forum. I was diagnosed with mets to soft tissue and bone 2007 and still doing well. I have received lots of support and information from this wonderful group of women over the years.
Tracey xxx
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: Just dropping in to say hello for the first time

Postby schoolteacher » Sun Jun 14, 2015 10:25 pm

:wave: hello and welcome Lesley though I am sorry to hear if your mets diagnosis Many ladies here have lived with bone mets for a very long time:)
My GP sent me for a scan when I complained of back pain last year. I was lucky as it was diagnosed as osteoarthritis. I'm sorry your GP wasn't on the ball.
Looking forward to getting to know you

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Re: Just dropping in to say hello for the first time

Postby ruth1 » Sun Jun 14, 2015 3:19 pm

Hi Lesley, wow you must be really pee'ed off about that but I guess all you can do now is make the best of it and do the treatment. We all live with that awful worry of progression which may or may not happen. I too am 63 and doing my best to stay on top of it all. Its a difficult decision when every pain alerts you to might be. It certainly sounds like you should have been tested earlier though.

Hope the treatment isn't too tough.
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: Just dropping in to say hello for the first time

Postby Janette » Sun Jun 14, 2015 2:46 pm

Hi Lesley,
Welcome to the forum. I'm sorry to hear about the mets. Sad that the pain didn't raise suspicion of mets with the GP. I've found my GP to be very on the ball as far as tests and referral to specialists for any pain just in case of mets.

There is plenty of support here from the girls with mets and others as well. :hugs:
Janette


lesleyb
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Just dropping in to say hello for the first time

Postby lesleyb » Sun Jun 14, 2015 2:24 pm

Hi all my metsisters from around the country. I was Dx in 2005 with Lobular invasive cancer - no lymph involvement. Went on to develop mets in Dec 2014. So I am fairly new to the journey.

Before I was diagnosed I was developing back pain over a period of 18 months. My GP here in Gippsland, Vic. kept treating me for arthritis in my back. Sent me for X-rays only.

The pain was increasing with every long walk I took. Eventually she organised a CT and the dreaded diagnosis was confirmed. I really feel so angry that so many GP's fail to order the wrong tests especially when they know you have already had cancer. It has also been confirmed that 20%-30% of BC sufferers will become metastatic. Those are pretty high stats so i think alarm bells should be ringing loud and clear to GP's when you mention bone pain.

I have had 2 radio sessions so far on my spine and it looks like I may be having some more soon on my ribs. On Xgeva at the moment. My onc is considering changing me to Zometa soon as i believe it is the Xgeva that is giving me foot neuropathy. I will see what happens when I change over. Also taking Arimidex again.

I am 63 year young and have three wonderful daughters and a loving, caring husband.

Looking forward to connecting with others on the same journey.

Lesley
Dx 2005 Grade 11 Er+/PR-/Her2-. Chemo/radio and arimidex for 5 years. Recurrence 2014. Stage 1V. Mets to mot of spine, sternum, 2 ribs, spots in lung and liver. Radiotherapy x 2 to spine. Current treatment - arimidex, Xgeva monthly.


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