Hi All,
Have many people suffered from secondaries despite having clear nodes at diagnosis?
I had SNB and two nodes clear which I know is good news, but on an American site for Triple Negatives, of which I am one, there seem to be quite a few with secondaries after a good SNB result.
Of course SNB is not foolproof, and it always worries me that sticking 3 holes in the tumour while doing the original biopsy could allow cells to escape into the blood stream.
Katie x
Hi Katie,
BC can spread via the bloodstream - not necessarily via lymph system so there will be those who had clear nodes (not me though).
Jenny
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Hi Katie…Jenny’s right bc often spreads via the bloodstream…I think I read somewhere here you were worried about bone pains?? Treatment itself can cause bone pain, I have bone mets but have mostly experienced pain, stiffness from the side effects of aromatase inhibitors, not much from the mets at all and I was diagnosed with bone mets in 2003…I hope all will be well for you…x x x
Hi Belinda & Jenny,Thank you so much for responding.I’m sure its nothing. I just got really freaked out yesterday. I’m calmer today and will just resort to “watchful waiting” for a couple of weeks, hopefully it will go away.Its just awful that aches and pains you wouldn’t have thought anything of now become a source of total fear!I would have been saying “I’ve done something to my back” . Now I’m thinking “what the hell is that pain?” and not mentioning to friends or family as I dont want to scare them…Ah the joys!What would we do without each other to talk to!!!Katie x x x x
Hi Katie
I have secondaries in the lungs, liver and bone despite having 25 lymph nodes removed which were clear. I was told at the time of my axillary clearance that there was no sign of vascular invasion but they have told me since that it had to be the way the cells escaped. I was also HER2- with my results, that changed to HER2 + when my recurrance in my super clavicular nodes were re tested and i found out it was in my lungs. I was on Tamoxifen which was then switched to Herceptin along with Taxotere chemo. I have also tried Arimidex along with Zoladex injections… none of these have worked for me.
I hope this isnt the case for you incase you are awaiting results, interesting thread though, i have always wondered how many of us BC ladies have gone on to develop secondaries despite having clear nodes… we all so different though…
hope you are well…take care
Jakki
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Hi Katie
I had a lumpectomy and my nodes were clear just under 5 yrs later secondaries in liver and bones.
I really thought I was going to be one of the lucky ones!
Love Debsxxx
well I was abit depressed before I looked now…
Hi Jakki & Debs,
Thank you so much for your answers. I dont want to be wishing secondaries on myself by asking this question, but I just think its better to know all the facts - good and bad. I really appreciate you sharing your information and I feel guilty asking, because I know I am very lucky to be in the position I’m in. I follow posts from Paula43 who was diagnosed shortly after me and is having a terrible time. It is such a random disease.
My onc insists on a Bone Scan prior to starting chemo, regardless of node status and that says it all to me!!
Horace, sorry that this depressed you. I dont want to give anyone unnecessary worry and a clear node statust at dx does make a big difference to the prognosis, its just that its not a guarantee…
I had no nodes involved or any sign of vascular invasion, (dx Dec 07) but I know that that doesnt mean it hasn’t/won’t spread, just that its less likely. It was triple negative which increases the chance of recurrence/secondaries. I wonder how much Tamoxifen and Herceptin have helped by prevented secondaries - a lot I imagine.The overall survival rate for BC now is so much better than it was thanks to those drugs.
Friends can be dismisive although they mean well, and say “you’ll be fine”, on one or two ocassions I have said “please allow me my fear and let me express that fear”
Best wishes to you all
Katie x x
Hi Katie,
Nice post - and I really like your last comment “please allow me my fear and let me express that fear”. I will remember this sentence.
Jennyx
Hi
Just to add my ‘experience’. Had WLE, clear margins, 5 nodes sampled, all clear, ER and PR+ HER2- but yes IT came back 4.5 yrs after 1st dx as a new breast lump and mets in hip and ‘suspicious’ bit on spine. By the way I was on Tamoxifen. As with Debs, really thought it wouldn’t happen to me as had such a good prognosis but I guess BC doesn’t abide by statistics. Sorry if this worries you as I’ve seen your post about 2ndaries but Kelly was also worried and has had a clear bone scan result where she had aches and pains so hope this is the case with you.
Take care
Nicky x
My nodes were also clear and my tumour Grade 1 so I didn’t have chemo at the outset but 3 years on was diagnosed with secondaries in the lung, my oncologist believes hat it must have spread through the vascular system. I was also HER2 negative but I do wonder if this should be retested.
I can also relate to the comment about fear. Friends try to be wel meaning but unless you have walked this road there is really no understanding what is invovlved, I listen to people wittering about their relatively trivial complaints with a sense of disbelief, not that I am necessarily an unsympathetic person!
Kathryn
Accoding to the fifth edition Susan Love’s Breast Book between 20% and 30% of people with node negative breast cancer subsequently have secondaries. According to Susan Love also, about 30% of people with node involvment don’t go on to get secondaries. These figures are of course restrospective and may have improved slightly (in the 4th edition of the book she says 30% of node negative people get secondaries) more recently but the figures are probably the best we can work with.
And Katie yes what great words: “Please allow me my fear and let me express that fear.”
Jane
Sorry love I am easily depressed!I too am triple negative so always waiting for the ‘tap on the shoulder’.I know my prognosis is basically good but I also know how unpredictable this disease.I too salute your closing sentence which says so well what can be hard to put into words.Information is strength.Good Luck xxxx
Hi
I think Janes statistics (of course )are spot on at about a third with clear nodes go on to develop secondaries…I really thought I was going to be OK after 3 years clear…at 4 3/4 years , bang liver and bones, We all know its not a guarantee…this disease is so unpredictable, we know people on this site who have relatively small tumors, clear nodes and are diagnosed with secondaries straight off.
Catherine
Hi Girls,
Thank you so much for your positive comments. I’m glad you like the “fear” line and I hope my confession will make all of you laugh,- but I have to admit that its pretty much what Samantha says to Carrie in Sex & the City, when she is diagnosed with BC, and I have been quoting her since I saw that episode replayed recently !!!
In the episode all her friends are trying to convince themselves and each other that “she’s going to be fine” and its a really good insight into how our friends feel, they can’t think the unthinkable. When Sam starts talking to Carrie about it, Carrie starts saying “you’re going to be fine” and Samantha stops her and says “let me express my fear” maybe not her exact words but you get the gist!
I think perhaps my friends think I’m being morbid if I talk about it coming back, but I think they now understand that I sometimes have the need to discuss that and I dont want to be dismissed with “you’ll be fine”.
Funnily enough, my parents, whom I am very close to, always let me say whatever I want to about it and never try to hush me up!
My Mum had ER neg BC at 54 and she is now 75 and never had a recurrence. So she’s certainly setting good parental example there!
Best wishes
Katie x x
When I had my first BC diagnosis in July 2003 I had a 14mm tumour (Grade 3) with no nodes involved. I had WLE, 6 x FEC and radiotherapy. A year later, when we were going through the process of adopting our daughter, my Oncologist gave a medical reference giving me a 96% chance of surviving the next 10 years. Two years later I was diagnosed with a recurrence in the same breast with bone secondaries in the pelvis. At the time of initial diagnosis I said that I didn’t care about the breast I just wanted the best possible chance of survival but my BCN assured me that there was nothing to be gained by having a mastectomy vs WLE. I now find that very hard to believe. When I complained to my Oncologist that I had been told my mammogram was clear after I found the second lump (which I was told was scar tissue but of course wasn’t), he said to me the bone secondaries “will have been there from day one”, although my current Oncologist says it is impossible to say that. I suspect my first Oncologist just said that to cover up his blunder. My re-occurrence had a 5 cm tumour and 9/14 nodes affected, so I feel the bone secondaries are more likely to have come from that.
Hiya,
Im triple neg, no node involvement…diagnosed in May with secondaries in liver & a rib 5 months after finishing treatment.
You can’t second guess whether or not you will get secondaries as cancer is very unpredictable.
Enjoy your life, try not to worry about it and deal with it IF it happens.
X
Hi
Just browsing and picked up on this thread. I get scared reading these secondary threads but as I am now learning its ok to be scared . I used to get myself in a state thinking the worst . The stats arent great are they but then again we are all different with different genetic make up and we just cannot predict the future.
I am seeing somebody at the moment who has helped me work through my thoughts and can echo what Julie has just said . Dont think about the ‘what if’ as we cant answer that question. If something happens we will deal with it then.
love to all x
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Julie and Cally, you are absolutely right that there is no point worrying about what you cant control. I am trying to put it to the back of my mind and I am sure I will as time moves on, its all a bit raw still because I only finished treatment a few weeks ago.
I am generally a very positive person, but a realistic one too! I have an insatiable desire to know the facts and then deal with them.
I am looking at doing a course in the winter, in my spare time as I work full time, but something totally different from my field of work (financial services). I think getting a new interest might move me away from obsessing too much about BC!!! I am thinking of Life and Business Coaching, and given my recent experience I think it would be a really useful way to look at what I want from life and where to from here…
I am really sorry if this thread has freaked anyone out.
Katie
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