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Secondary dx within a month of primary dx?

28 REPLIES 28
Guest user
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Re: Secondary dx within a month of primary dx?

Cheers Belinda

I had a friend come and do some family pix just after I started my chemo before my hair fell out! She did a great job

I'm dreaming my scan results are clear... ha!

X X

belinda
Member

Re: Secondary dx within a month of primary dx?

Hi Georgibella..I just wanted to say that's such a beautiful pic/photo..and Good Luck with the scan and results. Belinda...x

Guest user
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Re: Secondary dx within a month of primary dx?

Hi all

I was dx early Sept and my liver secondries were picked up at my CT scan and discussed with me jut over 3 weeks later but my Onc requested an MRI to confirm and these results and i refused to beleive they were liver mets!

Had x EC and 4 x tax. Now waiting for scan and results to see how how things are... I'm 37, was 36 at dx

L

celiab
Member

Re: Secondary dx within a month of primary dx?

Thanks!
C

Guest user
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Re: Secondary dx within a month of primary dx?

Hi Celia - what a horrible shock for you, you sound as if you're coping very well with things. Hope the chemo works really well for you and am sure that, like me, you'll find lots and lots of support on this forum.

Lesley xx

Sam_BCC
Member

Re: Secondary dx within a month of primary dx?

Hi Celia

I am sorry to read for your recent diagnosis. As well as the support you are receiving from the other users you may be interested in some of the other support service BCC offer. If you go to the following link you will find details of what is available:-

http://www.breastcancercare.org.uk/server/show/nav.505

I hope you find this helpful.

Kind regards
Sam (BCC Facilitator)

mrsblue
Member

Re: Secondary dx within a month of primary dx?

Oh Celia! What shocking news... if I can say so without being patronising, you are doing well to be posting on here! (I didn't join this forum till 18 months after my dx)
Looks like you have your treatment plan in place. I've not had chemo myself but I really hope it works well - and that you have lots of support for side effects (physical and emotional).

belinda
Member

Re: Secondary dx within a month of primary dx?

Hi celiab..what a shock it must have been for you..I can still remember how I felt at that time. I'm so sorry you have to join us but you'll find lots of support and some good advice here..Good Luck with your chemo this week.
Take Care..Belinda..x

celiab
Member

Re: Secondary dx within a month of primary dx?

Hello Mrs Blue
Its good to read your post and everyone else's and to know that other people have had the same kind of shock. I'm 28 and was diagnosed a couple of weeks ago with primary then secondaries in liver and lungs within a week of each other. Am starting EC chemo this week. still seems v. surreal because am feeling well!
thanks
C

Guest user
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Re: Secondary dx within a month of primary dx?

Thanks Liz, my OH wants me to put in for it, but I'm not sure at this moment in time, but its an option I'm mulling over. I'm about to reduce my hours further to 18, may see how that goes. I work with a good crowd, often keep me going, though they don't realise this.

You've made a good point, one that hadn't occurred to me, that you cannot change your mind, derrr!!!

Thanks again Liz and take care.

lizcat
Member

Re: Secondary dx within a month of primary dx?

Hi Lynni - sorry not replied sooner to your question about retirement but missed it til now !

Altogether it took 4 months and I got so stressed. I had to ask to be considered for it and the results could have been refusal (I'd psyched myself up for that), partial retirement where they make your pension up a bit and you can work again in the future for other firms or full retirement where they make your pension right up to what it would be at retirement age but you can't work again. The last one is the one I've got but it was completely out of the blue - even HR were shocked! They wrote to my consultants and GP, looked at it and then wrote out to them again for extra info. I haven't seen and don't think I ever will see, the report from the pension fund doctor but I know it was a very unusual decision especially as I am 44 and retirement age in the company is 62. I did see my consultants reports and think it may be due to the fact that the onc has said I won't be a reliable employee either mentally or physically, the disease is unpredictable and is incurable so I will need further treatment in time which would result in significant time off work. That's me guessing though !

This is only the scheme in the company I worked for and I had to apply with no idea of figures etc so it was a huge gamble. Plus you have to go with the outcome (you can appeal a refusal though) as if it's granted, it means the doctors consider you unfit or at best partially fit for work - there's no changing your mind !

Sorry to go on a bit (hope it's reasonably clear)but it is a long, complicated process and I can only speak about my case. I'm still waiting for the paperwork and actual figures for pension which will doubtless take ages but hey at least I've got it!

If you want any other info, feel free to ask !

Liz

mrsblue
Member

Re: Secondary dx within a month of primary dx?

Hi Alli
Bone mets are quite a few, in the "usual" places, but not extensive. The only troublesome one is in the hip area: there was talk of radiotherapy a year ago, but it was stable on Sept.'s scan.
I've been following your thread about palliative rads - hoping it will be very effective for you.

Hi Jools! 🙂

Another question... how were you all diagnosed? My bc was found at my 3rd routine mammogram, I'd not had pain or obvious bc-related symptoms.

Guest user
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Re: Secondary dx within a month of primary dx?

Hi Mrs Blue
I was diagnosed with Primary and secondary cancer within a month in April 07. Had 3 x Fec and 3 x Taxotere followed by Radiotherapy.
I was 35 when i was diagnosed so pre menopausal.
I am currently on tamoxifen and Ibandronic acid.

Jools

Guest user
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Re: Secondary dx within a month of primary dx?

Thanks mrsblue,
The pain hasn't been too bad in my back.In fact,I wouldn't even call it pain,as such but more of an annoying stiffness.I have got pain in my left shoulder and elbow though and Onc thinks it's being caused by my spine mets.
Where are your bone mets and have you had radiotherapy?
Alli x

Guest user
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Re: Secondary dx within a month of primary dx?

Hi I was dx Jan 07 aged 43, 3 weeks later with bone mets. Mastectomy, rads, bondronate and tamoxifen. Jan 08 changed to Femara (spread found in ovaries and peretineum). Everything still stable, no chemo as yet.

Lizcat - did you have any problems getting your early retirement. Hope you don't mind me asking.

Take care xxx

mrsblue
Member

Re: Secondary dx within a month of primary dx?

Hi Alli. Good to hear that Xeloda has helped. Have you had a lot of back pain? Hope the rads next week go well - I've heard that pain can get worse before it improves.

Guest user
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Re: Secondary dx within a month of primary dx?

Hi,
I was diagnosed 2nd Jan 08 then a few weeks later with liver mets.Now spread to right lung and two places on spine.Had Taxotere/Herceptin.Now still on Herceptin,Zometa and just finished Xeloda,which has worked well for me.Starting palliative radiotherapy on my spine next week for five days.
Alli x

belinda
Member

Re: Secondary dx within a month of primary dx?

I was 44 when diagnosed. Rachel I had Tamoxifen, Pamidronate and Prostap (works like Zoladex) when I was first diagnosed and I had a very long spell on Tamoxifen, it worked really well.
I hope you and Lesley have a long time on it too.
Take Care...x

lizcat
Member

Re: Secondary dx within a month of primary dx?

Hi,

I was diagnosed with bc in July 07, they were very certain there was already lymph node involvement in 2 nodes and then in Aug 07 the bone scan showed widespread bone mets although these are 'small'. Had chemo first, then surgery, then rads. After surgery, bc found in 12/22 lymph nodes. Bone scan July 08 shows stability and slight improvement so that must have been the chemo while it was in my body. Just been granted retirement from work with bone mets playing a major factor I think with them being incurable but me needing treatment for them in the future. I plan to have many years of benefit from the pension though !! By the way I'm 44.

Liz

mrsblue
Member

Re: Secondary dx within a month of primary dx?

Hi all deep-enders and receivers of the double whammy!
I'm 59, diagnosed when 56, maybe I'm the oldest of the bunch...
Dawn, which chemo were you given?

Guest user
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Re: Secondary dx within a month of primary dx?

Rachel, I'm on Tamoxifen as well. I started off having Pamidronate 4-weekly but have am now having it 3-weekly as I was getting a lot of pain in my hip which has now settled down and I'm pretty much pain-free a lot of the time. I've had a bone scan this week to determine if I have any more hot spots which weren't picked up by the MRI and CT scans.

I'm not on Zoladex but am going to ask about it when I see my onc next - I think I should be on it but at 48 perhaps they consider me a bit borderline! I'm definitely still pre-menopausal though and am strongly ER+ but borderline on the HR test so that's gone for a FSH test (re-test)

Lesley x

dm1968
Member

Re: Secondary dx within a month of primary dx?

Hi

I was diagnosed with bc on 16 July 07, and then after an mri scan, ct scan and bone scan all within 7 days, was told on 26 July 07 that had spread to the liver. So like you all, a double whammy to take in.

I had chemo in aug 07 to nov 07 and then been on herceptin since then.

Take care all
Dawn
xx

Guest user
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Re: Secondary dx within a month of primary dx?

Hi Ladies,

Thank you for your welcoming comments and Belinda, great to hear that you are doing well six years later, definately need the positive stories at the moment.
Lesley, I think you and I are very similar, especially with timing and diagnosis, hope your treatment is going well.
I'm currently having zoladex monthly as I'm 37 and pre-men., tamoxifen and pamidronate 4 weekly.
Would be really intertested in knowing what you guys are having, I think Lesley, you and i are on similar.

Rachelxx

Guest user
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Re: Secondary dx within a month of primary dx?

I was diagnosed with bc and liver mets together in July 2005. There are quite a few of us here diagnosed similarly. Sorry you have to join us...

Jennyx

Guest user
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Re: Secondary dx within a month of primary dx?

I was diagnosed with bone mets and bc just before Xmas 08 when I just thought I had a very bad back - was numb for a while before it started to sink in - I still am not sure it's totally sunk in now to be honest.

Would be interested to know what treatments you're having too Rachel as we must have been diagnosed within a couple of weeks of each other at the most.

And agree with Belinda that this is a very supportive forum and I'm really glad I joined.

Lesley x

belinda
Member

Re: Secondary dx within a month of primary dx?

I was diagnosed with bone mets and breast cancer all on the same day in 2003.
Hi Rachel I'm sorry to hear your news. What treatments are you having? I'm still doing okay and have responded well to treatments I hope you do too. There are some good treatments out there. We all know that shocked feeling. This is a very supportive forum. Take Care.
Belinda..x

Guest user
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Re: Secondary dx within a month of primary dx?

Hi,

This is the first time i have posted on the forums though i have been reading them since my diagnosis in December which was also secondaries diagnosed 3 weeks after primary, i have bone mets.
And am definately still reeling from the shock.

Rachel xx

Guest user
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Re: Secondary dx within a month of primary dx?

Hi mrsblue,

I was told I had bc and secondaries in liver on the same day. To say I was shell shocked is putting it lightly

Peggy x

mrsblue
Member

Secondary dx within a month of primary dx?

My secondary diagnosis (multiple bone mets) was three weeks after my primary bc dx, which was in July 2006. I thought I would start this thread for anyone in a similar situation, especially those recently thrown in at the deep end. I am still swimming...