Hello everyone,
Just to say Ive just been diagnosed with secondaries in the lymph glands in my neck, had a bone scan today (have been having a lot of back ache recently) and awaiting appt with Onc next week.
All a bit of a shock as its 4 years since my primary was diagnosed and Ive been very very well since then - the Onc found a swollen gland on one of my check ups last month.
So… dont know how I feel about going through the chemo thing again, it really was 2 years out of my life, with very little energy and no hair!
Any advice, comments or Qs I need to ask Onc greatfully recieved!
Kx
Kathryn, just want to send a cyber hug and love to you
bets wishes, monica xx
really sorry to read such crap news. I was diagnosed with supraclavicular node involvement late last year, am doing chemo, working full time and doing the things I want to do most days. If I can help in any way please message me, I know how it feels and it sucks. Hugs. Nikki
Hi Kathryn
I am sorry to read of your recent diagnosis. As well as the support you receive from the other forum members you may find the secondary BC resources pack useful, it contains information about diagnosis and treatment options. If you would like a copy just follow this link:-
I hope this is helpful.
Kind regards
Sam (BCC Facilitator)
Hi
Sorry to hear you have had the dreaded news of secondaries. You will no doubt be in shock and angry and upset at the moment - I certainly was when I was told I had secondaries to the bone last year. I also was about 4 years after primary dx and had been really ‘well’ all the time - little did I know! I was dx by a local recurrence which led to bone and CT scans so it was a real shock as I’d had no symptoms whatsoever. I did begin to feel I could cope with things once I knew my treatment plan and to adjust to this new life. I hadn’t had chemo the 1st time round but had 6 x FEC this time. It was do-able, I worked the days I felt OK and put up with the days I didn’t - mainly by being grumpy to everyone. If you have any questions, especially if bone mets are dx, then please do ask any questions. There are many ladies on here with secondaries and the support and information is fantastic - far more so than reading the odd book or webpage (no offense BCC!). Take care Nicky x
Hi Kathryn
I too have recently been diagnosed with secondaries in my bones and awaiting a CT scan to get the full picture. It was only last Friday and I am still in complete shock.I am finding the waiting for the scans/results really difficult! One minute I seem fine the next I dissolve in tears- yesterday in the middle of Asda!
I had chemo first time round and don’t know if I can go through it again (if that’s what I need) as I don’t want months of feeling c**p and basically putting my life on hold.
If we can help each other get through this in anyway please PM me. In the meantime try and stay strong
Hugs
Jax x
Hi
I got my secondary dx of bone mets summer 2008, also about 4 years after primary dx, so I too had got to the point where I felt I was ‘safe’! I had 6 x taxotere along with herceptin and pamidronate and am now continuing with just the herceptin and pamidronate. I know how you feel about not wanting to go through the chemo again, it sucks, but you CAN do it, you CAN get through it and now over a year on from the secondary dx I can actually imagine myself being around for a few more years, largely (I think) thanks to the chemo. (By the way, I was able to use the cold cap and although it was by far the worst element of the treatment day itself, I did keep my hair and was so pleased I persevered with it.)
Try not to think of it as ‘putting your life on hold’ - sure, there will be days when you feel c**p, but in between there will be plenty of ‘normal’ days, and however hard it is I think we just have to try to make the most of the good days.
However, please don’t think I’m trying to tell you what to do … it’s just that I can’t imagine not wanting to try anything and everything that’s available, if it’s going to keep me alive for my little girl (she turns three at the beginning of december) even just a little bit longer.
Wishing you the very best of luck with your scan results.
Alison x
Many thanks to you all for your comments - I remember getting such good support from everyone on this site 4 years ago and, although I hoped id never have to, I think Im going to get the same again this time.
Kathryn
Hi Kathryn,
Sorry to hear about your news. I had spread to the supraclavicular nodes 2 years ago. I had surgery to remove the infected nodes then weekly Taxol which wasn’t too bad. I used the cold cap and kept my hair. I then had radiotherapy because I didn’t have radiotherapy to my neck when I had my primary treatment. I hope your other scans are good.
Best wishes, Gemini.
Thanks Gemini,
Ive been told they wont remove the nodes, dont know why, but its another question to add to my ever-growing list ready for when I see the oncologist next week!
Ive also been told they “dont do” the cold cap at my local hospital, so I need to find out more about that. How did you find the cold cap? Ive heard mixed reports about using it.
Thanks again,
Kathryn
Hi Kathryn,
sorry to read that you have joined the club! I hope you will find a lot of help and support though. My original dx was 19 years ago, but secondaries reared its ugly head much the same way as yours - with lymph nodes. Mine came up around my neck & collarbone - right up to just under the ears - back in 2002. There was never any suggestion of removing them and it never occurred to me then that it was even a possibility. They became quite a good guideline for how effective different treatments were. I had various other scans and mine had spready extensively to my bones. Chemo (navelbine) got rid of all the lymph lumps but after a few weeks they started to come back again. By then I had run out of chemo options but they doublechecked to see if her2 status had been determined in the last surgery I had. They had - and I was her2+++ so went on herceptin and bone drug and have been reasonably ok since.
Do feel free to ask more questions (or pm if you prefer)
dawnhc
Hi Kathryn,
I used the cold cap with my primary treatment (EC and Taxotere) and it didn’t work. It was a bit of a pain to use it every week with the Taxol and every week I thought my hair would start falling out. I think I had to put it on 1/2 hour before Taxol started and then keep it on for 1 hour afterwards so it did mean staying longer at the hospital. At first it was v cold but then my head was just numb !
I hope your hospital will let you use it if you want to.
Take care, Gemini.
Hi Kathryn, It is a shock to the system isn’t it when news like this comes out of the blue. There are lots of lovely ladies on the site who will be able to support you through all this. I, like Dawn, have been living with secondary diagnosis for a long time now. The chemo I have had for secondaries has been a much “easier” type of chemo. I have bone secondaries for ten years now and my original Diagnosis was way back in 1989. Feel free to ask any questions that arise. Try t take one day at a time…yu will get there. Much love, Val XX
Hi Kathryn, I’m so sorry to hear your news…what a shock for you. You will always find help, info and friendship here, this is a very supportive place. I was diagnosed with bone secondaries in 2003. I feel really well, there are lots of good treatments available…
Good Luck…xx
Hi Kathryn, No-one can foresee how your chemo will go I just hope you tolerate it as well as I have this time round (6x Taxotere when I had 6x FEC before two years ago). I was dx with bone mets in June and am just having a brief break between chemo and radiotherapy but can say that it IS doable and worth trying it all for better quality of life, pain relief and preventing further bone damage.
Do order the pack Breast Cancer Care have put together - it’s really useful and I found the DVD reassuring. The shock and anger does wear down and you will feel better even though it may not seem so now. I( don’t know how much information you like but I found Musa Meyer’s book about living with advanced breast cancer very useful.
All the very best to you.
Thanks everyone for all your comments.
I saw the Onc today … and the bone scan was clear, which was so fab to hear!
What Im a bit confused about is that the breast & ENT surgeon had said they were secondaries, but the Onc said it was a regional recurrence and not secondaries. Can anyone offer an opinion on that? The nodes were in my supra-clavicular region.
I have asked to be referred for a second opinion, which is now in hand as Im a bit confused about a couple of things, but the plan at the mo is for 6 X Taxotere and then rads to the neck.
So, although Ive got the joys of chemo and hair loss to look forward to again, Im obviously thrilled about the bone scan. I feel like Ive bought a little more time 
Thanks again,
K x
as you know i’m in a similar boat to you. The spread to nodes is classed as regional, although why not secondaries is beyond me. In most cases sadly the outcomes are the same, as indeed are the treatments in one form or another. ↲↲Do a search on JaneRA she helped me a great and another no nonsense woman.↲hugs↲Nikki
Hi Kathryn and Jaxx - yup it is crap when you get the secondaries diagnosis - it’ a whole different ball game. But not one entirely devoid of hope - there’s still lots they can do. I do hope that both your situations will become clearer, and you learn to live and achieve a reasonable quality of life when you have secondaries - something we’ve all had to do here. Don’t think you cannot be happy again - you will, but it’s true that life will never be quite the same again.
I hope things go well with you
with very best wishes