I feel a bit silly asking this but my pal just came thru secondary breast cancer and was given the all clear prior to Xmas. Fab news as she is just 29.
However, she keeps askin me why i am not getting regular scans etc to see how successful the treatment is especially due to my poor prognosis.
I asked ONC and she said its cos mine is primary and its diff for secondary?
Anyone make any sense of this?
She just says mine was removed during the op so its gone and they dont need to check.
Hi Signet, I have never heard of anyone getting the “all clear” with secondaries. I have had bone secondaries for 10 years and although I am in relatively good health now, and have recently finished 8 months of chemo, I do not think I will EVER get the “all clear”. Once you have secondaries…you have secondaries…unless someone else knows differently that is…
I do not know enough from this thread to understand what treatment you have had so far…and what your results were but I am sure your ONC will be looking after you. Do you have a Breast Care Nurse at your hospital you could speak to on the phone? She may be able to access your notes and answer any questions about your own case. Love Val X
Signet, I think there’s some confusion/misunderstanding here. If your friend has secondary b.c she will not be clear. There is no cure at that stage-treatment is ongoing for life, until we can no longer cope with the treatment, or it ceases to work . She may have brief periods of NED (“no evidence of disease”)-but it will return, weeks/months-or if she’s lucky, years later.If this is the case, tehn she will have been able to take a break from treatment, while still being monitored-and when progression starts again, her onc will put her back on chemo. I’m sorry you are finding this out through aforum-it sounds as if your friend has not wanted to worry you while you were dealing with your own illness?
Scans for primary patients aren’t done routinely. The system simply couldn’t cope with following up on everyone who has been treated. But if symptoms are worrying, oncs will arrange for appropriate testing.
I’m secondaries in bone. I didn’t know this “all clear” issue until a few days ago when I asked my onc the question. He said: “it’s very unlikely you will get the all clear - (yes, very unlikely, but not impossible). But you might recover to a stage where the machines won’t detect it.”
I was a bit disappointed by the comment, but then, it’s good to know the facts and face it.
Take care
Thanks for all your replies.
Not sure what to think now. She has always portrayed a very pretty picture of BC and made out its a breeze and curable. I have to admit i have found it really tough from outset of treatment so i thought maybe i was weak or not as strong. She said she had bone and liver mestastis. On 18th December she was told she had 2 lesions left on liver that would go with the herceptin and one node infected yet to be removed but otherwise ‘all clear’ in her words. Maybe she isnt being entirely honest with me but we did speak and she said she is really excited to have more kids etc…
I am starting to find the whole cancer issue a minefield. I dont seem to understand much about it and feel i am getting bits here and there and probably panicking a bit.
Thanks yet again tho to you all for your replies and I wish you all well x
In answer to one of your post i was to have 4 FEC and 4 Taxotere then 5 weeks radio. Due to major probs before xmas i only had two FEC and have been changed onto radio now. My cancer was Grade 3, Stage 5.
I just find it odd when they say its all gone yet there arent really any reassurances.
I think i am going thru a period of uncertainty about how i feel and how to move forward and a bit here and there. I will be fine though.
Lynn
x
Hi signet
I personally loathe the term ‘all-clear’. It is really no more than a piece of ‘journalese’, used by the Press, when, as Elaine said, they should be using the expression NED.
No-one can tell for sure whether they have survived (better than ‘been cured of’, I feel) cancer until and unless they live to a ripe old age and then die of something else. (Happily, these days, more and more are doing exactly that).
This is because cancer remains a fickle and unpredictable disease, whose course, if any, remains very difficult to foresee.
For example, each of us is different physically, repsonds differently to the the treatments, there are many different types of breast cancer, etc, etc. Many variables, in other words.
(I have liver mets. Recently they were shrunk to the point of near invisibility by chemotherapy. My oncologist describes my cancer as ‘chronic’ and I think that’s a good way of putting it…I suppose you could then term the almost inevitable regrowth of the tumours at some point in the future a ‘flare-up’).
Signet, I wish you well for your treatment - and your friend, too. There is lots of ‘official’ info’ on this site and the members themselves will always do their best to help you, too. It might be good to see if you can get more explanations from your bcn and oncologist, as well.
All the best for now.
X
S
What is Stage 5?I thought they only went to 4 and that was secondaries or am I wrong?
I was going to ask that too, never heard of stage 5.
Hello Signet
just been reading this thread and I just wanted to urge you to get in touch with your bcn, as you seem uncomfortable with all the different info you are dealing with. The thing that might help you most is to have a talk and get all the answers you need from someone who knows your case and all the details.
I wish you well,
take care
monica x
I agree the term chronic is the best description.
l too have liver secondaries, and at the moment they are ‘responding’ to hormone treatment. But as the onc keep reminding me(!) they will come back. although it’s not what I want to hear sadly it is the truth. i have not had any chemotherapy, and that does worry me sometimes as everyone seems to have done.
ps there is no stage 5
Thanks again for your replies.
Now i am completely at a loss. I wrote down everything the ONC told us at my prognosis and just double checked the grade and stage and either I heard her wrong or she told me 5???
I give up. It seems i just get told utter crap in that case.
They went on and on about grading and staging to me and kept saying dont confuse the two!!!
Whats the point speaking to BCN or ONC if they are tellling me things that dont actually exist. Sorry to sound pissed off but i am now.
Don’t give up, signet.
You need some facts.
Get either your onc or your bcn to talk you through everything again and make sure you understand as you go along. Perhaps someone can go with you as well.
It sounds like you tried to make notes the last time you saw anybody, but were you a bit rushed?
Also, sometimes health professionals talk away in their own jargon and forget that the patient isn’t an expert like they are.
Don’t blame you for being peeed off - I would be too, in your position.
X
S
Thanks S, i think your right. I need to take my partner along and go thru it all again. He was with me first time but we were both a bit shocked cos they initially had said my cancer was grade 2 after the biopsies when i first found out.
After mastectomy and recon I felt really positive and thought i had a really good outlook then we met the ONC the friday after i got home and she told us it was grade 3 and very aggressive. I wrote down 5 but maybe it was me in a blur cos we were just very shocked at how severe a picture she painted. I went from thinking i had been ‘lucky’ not to be grade 3 to finding out i was and that the tumour had been 7 cm and 15 nodes infected out of 23 removed.
Its all been a lot to take in. I am calling my BCN just now to arrange a meeting.
Sorry if i sounded angry, i just dont seem to have been told the right things throughout.
Lynn
Hi again, signet,
When I had my second primary, I was initially told it was probably benign and even if it wasn’t, it wasn’t likely to be very aggressive; second primaries, they said, we were less likely to be serious (dunno where they got that one from)
So you can imagine I was less than thrilled to be told a few days later it was definitely cancer and then, after the lumpectomy, that it was very aggressive (I also had lymph node involvment).
I really wish they hadn’t told me anything! It made the shock worse, as I expect it did for you, signet.
Hope you get an appt soon with your BCN and get everything ironed out once and for all.
Take care, now
X
S
Hi Signet
You seem very confused. I can only make suggestions. As I understand it - with secondaries - you don’t get the all clear - but you can be at a stage where you have no cancer cells in your body. But at some point they will return. I wonder if this is what your friend means.
I think you are doing the right thing by contacting your breast care nurse. It really is impossible to understand everthing they tell you - first time. Ask if they have any literature you can read.
This site is a good place to rant and rave - there are loads of us who can understand how you are feeling.
Good luck.
Liz
Hi Lynn
I’m not surprised you are pee’d off - I went to my local hosp and got the all clear with this diagnosis and just lacked confidence in what they had done so contacted the hosp i got treated in first time and was seen and diagnosed within 2 days. It is so easy to get wrong info but its so important for you to be clear what you are dealing with, cancer is stressful enough without having to deal with confusing messages as well.
Following on from info on this forum, I asked my bcn to print off my results for me and explain them to me. I took notes and I have both the printout and my notes at home, and that has really helped me.
I hope things start to get better soon,
take care
love, Monica x
Hello Lynn,
Your diagnosis etc is very similar to what mine was. I was told grade 2 and probably no nodes involved. However after the mx, turned out 19/23 were involved, my margins were microscopic and it was aggressive gr3. A year on, I have been through chemo, radiotherapy and now on tamoxofen. I dont know what the future holds but I do feel reasonably well and am back at work.
It was a shock for me, and i didnt trust the doctors again after that because i felt i was being bs-d a lot of the time.
I am not saying I am completely over it either mentally or physically but i am realistic about what can happen and cautiously optimistic that it wont, does that make sense?
Anyway good luck with your treatment etc…
Linda
Good luck Lynn you do seem to have been given confusing information.If you trust your GP he/she will be able to access your hospital notes and will explain things to you.
Grades are 1,2 and3
Stages are 1,2,3 and 4
Yours sounds like Grade3 Stage3 to me.
The ‘all clear’ info is misleading too.
You poor thing you must be in turmoil-why not have a chat with the BCC helpline?
Love Valxx
Could I also suggest maybe putting yourself first, for a while? Find out exacty what you need/feel comfortable about knowing, concerning your cancer? This may sound a bit harsh, but try and put your friend’s problems to one side for the moment. She has her own unique problems, you have your’s. In time you may be able to help and understand what is happening in her life-but only when she is being honest with you! It does sound as if she’s trying to minimise your worries-I genuinely think she will understand how serious her condition is-and she is trying to protect you at a time when you have worries of your own. Accepting that this could be the case, there are times in life-especially with this disease-that you have to be very focused…on yourself! So, don’t feel guilty-get the answers you need, and then have a chat with your friend, asking her to explain a bit more about what she meant. If she still gives you the same story, then…we’lll cross that bridge when we come to it! Look after yourself, and please come back and tell us how you get on.
Thanks everyone for your replies again. I always feel bad cos i seem to be one of the few who know very little about cancer. I dont know the in words etc and just feel i am floundering. Prob be an expert in a year or so.
I am really grateful for the support on here. I feel like a PMT woman. Going from ok to angry and back. Its a roller coaster of emotions but am sure you lot are experts on that.
My friend came to the rescue last night. She is a nurse who lives up the road and as we are snowed in she walked down with a bottle of wine and we had a right giggle. Its nice to have some normality. Cancer can take over your life partic with the apps etc… but we had such a good blether and she does palliative care so it was good to speak to her.
I have decided i am going to fulfill my life time desire and volunteer to help with homeless. Always wanted to or be a befriender so I have emailed my details and waiting to hear YAY. Not working at mo as not allowed back!!! Dont go there. So may as well be of some use.
Thanks again and i will email once i speak to Onc bout this Stage 5 fiasco!
Lynn