I was dx in Feb 2006…had a mastectomy and node clearance. The cancer was multi-focal grade 3 and I had 2 nodes involved. I underwent 6 x FEC and 13 radios…6 months on Tamoxifen and then Arimidex which I have been on for 14 months.
I have called this topic ‘scared’ because that’s what I am.
To explain I have been told of a few friends that I know who went through treatment at the same time as me…and had what seemed better outlooks than me…have/had been dx with secondaries. In fact, one poor friend died 10 days ago and the other today was told she has a matter of months left. Both secondaries in the liver.
I am sitting here thinking…why them? Why not me? There seems no sense to it…some people remain disease free that shouldn’t and some that should don’t. At the moment, on the rebound of the news I’ve had, I find this difficult to cope with…but I realise there is no way of knowing our outcomes. I could have a scan today that is clear and then go on to develop secondaries next week or next month. How can I deal with this without going insane? How do you cope because we are all in the same boat…I know I’m not alone.
Don’t get me wrong, this isn’t the first time I have been down this road in my thoughts but not for a long time. The other two ladies and I are over 2 years down the road from initial dx and as I said, they supposedly had a far better outlook than me and yet one is already gone and the other won’t be here long…leaving three young children behind. I don’t want to waste time worrying my life away…however long that may be.
I would be grateful for anyone’s thoughts and help.
There is always a time when these thoughts come back. I am assuming you yourself have no ‘symptoms’ of anything.
I still have times when I am terrified (I was dx March 2005) but they are less and I fully understand you calling this thread ‘scared’.
I think there comes a time when you have to focus on ‘you’. We all know our own situation and we have to learn to live with it. In other words, we have to be somewhat selfish. Do what you need to do for yourself.
If we knew the answer to your questions, then we would have the key to getting rid of this bc (I refuse to give it capital letters) but if you find you really are having problems then please speak to your Macmillan nurse or someone on this site. I have found this site invaluable.
I know there’s no answer Caz, I suppose I’m just writing down my fears and thoughts…perhaps almost trying to dilute them if that makes sense. I have no evidence to have fears about myself, it’s hearing the news about my friends that has totally unsettled me again.
I understand what you mean about ‘me’ time and I do have that attitude at times, in fact, I cope probably most of the time but then something happens and my world crashes in on me again and feel almost back to square one. At the moment I’m in a deep, black hole.
I don’t have a MacMillan nurse…never had one or was indeed offered one and the breast care nurses at my hospital are not always very receptive I feel. I talk to my GP and she is generally great but obviously hasn’t the time to spend with me so her usual answer is to ‘not think that way’ when I air my fears about recurrance.
This site is good but as you say, there is no answer to my questions and there is no one who can put their arm around me and reassure me that all will be well. I never dreamt that I would get breast cancer in the first place as there is no family history or any ticks in any of the boxes that would have made me anxious. The trouble is…I never thought I would get cancer but now I feel sure that it is a matter of time before its evil clawed hand taps me on the shoulder again. Negative I know but I’m being truly honest.
I’m a single parent and when dx had two boys of 11 and 14…I remember praying to whoever is out there to give me 10 years to see them grow into adults. Ive had 2 years…8 to go…will I be blessed?
Am sure you will be. I find keeping busy and doing a lot of exercise and in particular yoga helps me to live in the moment and avoid procrastinating about the future.
Hi Sheana
Saw your message and am glad you have had some replies, I didn’t want to jump in because my situation is different from yours… except that we have both had bc! I never thought I’d get it, either.
Yes, it is well known that bc can come back, sometimes after many years. It’s not so well known that even when it has spread it can be controlled, sometimes for more than 10 years (I have bone secondaries, dx Aug 2006).
May I say that it’s OK to feel scared, and it’s great that there is this forum where we can share our thoughts and feelings. Possibly consider a few sessions of counselling which could help you in the “deep black hole” you mention?
Or you could change your GP
Anyway do keep posting here.
Thanks for your reply. When were you first dx…I’d like to hear your story too.
Do you think that my GP has a poor attitude? She has been my doctor for almost 20 years and know her very well but sometimes I feel she is lacking…time restraints don’t help I know. I feel that she thinks it’s time I put it all behind me and move on. Sometimes I do that but other times I find it difficult, like at the moment.
I do realise that some secondaries can be controlled for many years but the two friends that I mentioned in my other posts both had cancer that spread to bones but seemed to very quickly move on to their liver. It has all happened at a terrifying speed.
As I said before, both these ladies had lower grade cancers than me and seemed to have such a better outlook too…but it wasn’t to be. It has left me with a sense of waiting…waiting for signs and symptoms and I know I can’t live like this. Hopefully as time passes and I remain well, this black phase will fade but I know I will be set off again by some other article…incident etc. Maybe this is how life will be…a roller coaster ride.
Hi Sheana
I was dx by routine mammogram, on 31st July 2006 was told it was cancer and had spread to lymph nodes. Surgeon ordered further tests, a bone scan showed hotspots… so never had the breast op! I am ER+ PR+ Her- and am taking letrozole (Femara).
I don’t want to put you off your GP if you are otherwise happy with her- I am fortunate to have a specialist bc nurse. GPs have plenty to do, they might not necessarily be good at listening to our concerns and worries. But nobody can say to us “put it behind you and move on” - we all live with uncertainty.
Regarding your two friends, maybe it could be helpful for you to talk to someone about your feelings of loss/anxiety? - I hope and pray that you will find the right support that you need just now.
Lindsey.
My cancer had spread to lymph nodes too but I didnt know until after my op, how did they know before in your case…I didn’t have a bone scan after the operation either, in fact have never had one. I’m confused as to why you didn’t have the breast op…Hope you don’t mind me asking you these questions.
I understand completely how you’re feeling, as I just asked my onc about the odds of secondaries, and share the same fears as you. I don’t have the experience of losing a friend to it, but can appreciate how absolutely gut wrenching that must be.
We must ALL live with the fear of recurrence, whether we admit it or not, and we just have to find a way of pushing the fear to the back of our minds, so that we can cope with living just now, which, after all, is the important thing.
Hi Sheana
Yep my case is a bit unusual (“but not unheard of” said my bc nurse) and that is why I had hesitated to post a message, because so many people find it confusing… took me months to get my head round the idea. BTW I am treated at the Marsden so I have confidence in what they are doing for me by way of treatment and monitoring.
Had underarm fine needle aspiration at screening centre, cancer cells found. Would have had breast tumour and lymph nodes removed (“total axillary clearance”) but was sent for bone tracer scan (+ other tests, which were negative). Then a breast biopsy which showed a strongly hormone-responsive bc. So… letrozole (Femara) which acts to stop cancer cells growing (anywhere in the body) and shrinks the tumour.
I don’t ask too many questions, main thing is that the treatment is working! Not asked anything about how long I have… as Sue said, we all live with uncertainty… and we all have good days and **** days… but fortunately, only one day at a time
Hope this helps you and anyone else listening in.
I too worry about whether or not I’m going to get secondaries, recurrence or God knows what, so in that respect we’re all in the same boat.
My hubby tells me (and I agree), that I have an oddball way of looking at things, and so to a certain extent have refused some treatments, and am taking my chances.
I have had a few friends who have had secondaries and died, but, and I don’t mean to upset anyone, if statistics show that a certain percentage ‘make it’ and live for many years, every one who doesn’t make it increases my chances of doing so. That is how I’m coping at the moment. I said I had a whacky way of looking at things and I certainly don’t want to appear hard hearted, but like some of you say we have to look after ourselves.
It still upsets me when I hear of others with secondaries etc but like those who don’t have breast cancer think ‘glad it’s not me’ I think the same.
Hi mrs blue I had WLE , SNB last Nov 1/7 shwed cells . Started on epi in Jan had bone scan due to pain in spine , was told I had hotspot on shoulder blade but told not to worry !!! So what the bloomin heck is a hotspot??? Pain proved to be osteo arthrititis . Since then completed four doses of epi, two cmf should have had four but onc stopped as i was very poorly. I am 17 days on with Rads have eight days to go. So when I saw your thread it started me thinking about hotspot again , it was never expained to me and cuz I was told not to worry did’nt ask for any either . Hope you can enlighten me. Bobbiex
Hi Bobbie
Yep - apparently “hotspot” means an area of increased activity of the bone-building and/or bone-destroying cells in that area. Can indeed be caused by osteoarthritis as well as by bone secondaries.
Hope you are coping OK with rads, not had them myself but the tiredness can build up during the treatment, I’m told. Eight more sessions - not long now!
Hi mrsblue Thanks for that info , I’m sure its osteo in that area. Will talk to onc when I see him again. You sound a very positive person. As you say though its hard to kep it up all the time. Every day at rads session you are asked for your address and today I said ’ I have two abodes Cov Uni hospital and my own address , so take your pick’. Feeling a little insecure now treatment ending at the same time cannot wait for it to end.
Bobbie
