Hello (again) to everyone here. I was diagnosed with Stage 1, grade 2 lump which I had removed just over 2 years ago (no lymph node involvement). Went through chemo (considered borderline for chemo but decided to go for it) and radiotherapy although refused tamoxifen and have been fit and well since, returning to work full time. Had almost got to the stage where the cancer was but a nasty memory. I used to surf these boards regularly for advice and support through diagnosis and treatment and then felt as though I had graduated when I returned to the land of the “its just a nasty memory” and haven’t been near them since.
Anyway, nagging at the back of my mind for the last few months has been a very persistent ache in my hips/thighs. I’ve managed to ignore it for most of the time when I’m busy at work or put it down to the fact that I do a lot of running. However, it has been nagging at me as not being right and so finally plucked up courage to report it at check up this Monday. Result was a bone scan today and an appt for a month to get the results.
I have to say that the waiting is driving me mad. Its just like it was when I was diagnosed - that feeling of wanting to scream and shout and be hysterical but having to keep a lid on it and attempt to be “normal”. Haven’t shared this with anyone but my hubby (have three children - 9, 12 and 23)… He deals with it by refusing to consider anything but the results being fine. I, OTOH, deal with it by being absolutely sure its secondaries and planning out exactly what I’m going to do when this is confirmed.
As I’m a teacher I am on half term this week, but frankly I’m dreading going back to work next week (although also know that work kept me sane through diagnosis as I could at least “forget” about everything whilst totally absorbed dealing with students). To make it worse, there is a promotion coming up at work which I have been aiming for for a while and which I have been encouraged to apply for, but I feel that there is no point if I’m about to be pronounced terminally ill.
Not sure that I really have any question to ask, just letting off steam and looking for a bit of support. In my dealing with this by attempting to be prepared please can anyone who has been through this tell me what they have done workwise? I know it seems like a crass question but should I give up work (I don’t have to work financially) and ensure that last few years are spent “wisely” or should I just attempt to carry on as normal?
All advice, support, positive vibes greatly appreciated.
Good to hear that you listened to you’re nagging feeling and got this checked out. It is more than likely nothing more that winter aches and pains. Have you thought of phoning the oncologist secretary and asking for the appointment to be brought forward?
The one month gap is very long (n my opinion) when worrying and I can’t see why it takes that long for the hospital to process things. Be proactive in trying to hurry things along, phone the hospital trust if you must. I have had several rounds of treatment and where ever there has been more than a two week delay I have been on the phone every day for a cancellation and every time I have received earlier treatment, not by queue jumping just efficiency of filling the cancelled appointments hospitals do nothing about.
I think being a thorn in the side of the NHS is the only way to get the treatment you deserve.
Go on pretend you are disciplining your class, be proactive in your PPA time!
Agree with Carol. Good idea that you’re getting this checked out. You shouldn’t have to wait so long for the results of the scan - a month is not good enough. Be vocal, be pushy and say you want the results pretty damn quick.
I had been having problems with a persistent pain in my hip that wouldn’t go away. Went to talk to BC Nurse who raised my concerns. He sent me for a scan. It came back clear. My hip pain is no more.
Good luck with your scan - keep posting, let us know how you get on.
Well, I’ve finally managed to get my appointment brought forward and am seeing consultant at 14:50 tomorrow (Monday). Got hubbie to phone the consultant’s sec on Thursday but scan results weren’t yet through. She phoned back Friday afternoon and said they are now on the system and gave appt for Monday. They refused to give out results over the phone though (I realise the med sec can’t do this but obviously also the consultant’s policy otherwise he might have phoned). This is so frustrating as I would rather hear over the phone. It means I wouldn’t have had to sweat it out over the weekend or alternatively I would have had the weekend to deal with bad news and be more ready to discuss treatment tomorrow.
Not long to wait now though. Its strange, half relief that at least I will know tomorrow but half sheer terror at having to go through getting the results. I keep playing out in my mind the bit when I got told I had cancer. I knew before they said anything because they brought a nurse in on the appointment. I just keep playing that bit over in my head for tomorrow’s appointment.
On a lighter note (I think), had a bit of a panic moment as hubby and I entered Sainsbury’s today. I burst into tears and ran out of the store leaving hubby in the lurch. As I went outside to get some fresh air I blew my nose and promptly had a gushing nosebleed. Had no choice but to return to the store to go to the toilet and suddenly realised that anyone seeing me in tears with blood gushing from my nose might think I had been assaulted. The practicality of dealing with nosebleed brought me to my senses and I was then able to continue the weekly shop.
Best of luck for tomorrow. I know how you feel, I’ve just been through this period of waiting for test results and been phoning every day to see whether results were back. Glad to say, everything was ok, but the worry never goes away. I did not have such a good prognosis as you, so they (hospital, GP etc.) are keeping a very close eye on me, which is obviously a good thing. But I must admit, there are times when I am getting fed up with permanent tests etc. On the other hand, as my GP said, ‘you would not thank me if I sent you away and 3 months later something nasty would turn up’ - he’s got a point there!
As to giving up work, perhaps this is a time in your life when you feel that you generally want to re-assess things. I would not suggest to give up work just because you’ve had a CA diagnosis, but if you have been unhappy with teaching for a while, maybe now is the time to think about it. I know from this site that most girls would prefer to work if they are well enough, but obviously everyone is different. I had just been offered a new job when I was dx for the second time, so obviously could not take up the offer. But I know that when I was first dx, the support from work colleagues was tremendous and a real help during treatment and the first few months once I was back at work.
I remember your posts a year or two back. So hoping all is well for you tomorrow.
If not there is some great support in the secondaries forum here. Some women with bone mets are doing really well several years after diagnosis.
Don’t feel you have to make rany rash decisions about work. It’s a very individual thing. If you do have secondaries you’ll be able to get early retirement on health grounds if thats what you want, bt you may want to continue working.
I know what you mean about going over the bad news in your head…and knowing if the nurse goes in with the consultant what that probably means.
Hi Winthorpe. I have put some postings on a different thread but was interested to read yours. I was dx in April 2006. About a 3-4 weeks ago had routine check up with ONC. I mentioned a tenderness / pain I have on my back and he sent me for chest xray. 2 weeks later I unexpectedly recieved a letter from ONC saying the xray had showed up an abnormality on my 9th rib at the back and that radioligist recommended a bone scan to get to the bottom of the problem. I had the bone scan last wed 20/2/08 and have yet to hear when I will be seeing the ONC for the results. I like you am back to that terrible waiting game !!! I also at times let my mind run away with what I will do if the results are positive. I’m a pychiatric nurse and am back working full time. I would be able to retire at 55 and will make up 51 in July, so keep thinking I will look at taking early retirement. Let us know how you get on tomorrow.
Hi Wynthorpe Please let us all know how you get on asap. I had bone scan last Mon 18th Feb and will get results on 3rd Mar but two weeks life a lifetime . I had pain in base of spine and only half way through my chemo . Had WLE and one lymph node out of seven involved so my prognosis very good . I thought ONC would just x ray and say arthritis but when he suggested bone scan then I started to worry. I’ll keep fingers crossed for both of us . Is’nt this waiting game the pits … never seems to end since finding BC last OCT
LOve Bobbie
Sorry I didn’t post last night. To be honest I slept so badly (or rather didn’t sleep) the night before the appt that I was like a zombie all day yesterday. Couldn’t get out of work early (well not without too many people asking questions) and so had to delay the appt and then I was the absolute last person in the clinic. Anyway, to cut to the quick my results were fine and a HUGE relief, I can’t tell you (but many will know). I guess I can now just add to the club of people who have had “the nasty scare”. Sorry ladies in the secondary club but I won’t be joining you this time.
Got up early this morning (after having crashed out at some ridiculously early time last night with pure exhaustion) and feel full of the joys of Spring. Had the first night in bed in ages where I didn’t wake up in the middle of the night and think dark thoughts. Its like I’m slowly reclaiming all those things that I had steeled myself for if the results were positive. Stupid things really - I don’t have to cancel my appt with the hairdressers or lose the locks that I so treasure having taken 2 years to grow them back after chemo, I CAN now apply for the promotion at work that I’ve wanted for the last year, I DO have a chance of making my pension.
Anyway, I guess I’m going to remain philosophical about this whole experience. I’ve likened having had breast cancer to having a black box somewhere in the recesses of my mind. In the black box are all the nasty things concerned with the cancer and the lid has been firmly on for the last 2 years since I finished treatment. However, I know that that box is still there and have to be prepared for the lid to come off again in the future. For me, I had to face taking the lid off myself by admitting to my aches and I’ve had a few weeks with the lid right off. Last night I could put the lid back on and put the box back into that dark corner, hoping that I can keep it there for some time. At least having had this experience it reminds me about all the things I vowed after treatment - to really enjoy each day etc etc (gosh - I’m sounding like a raving mad woman now!!!)
Just wanted to say thanks again for the support, these forums have once again become my lifeline during a bad few weeks. I found it very reassuring reading the experiences of the lady’s in secondary and realised that there was a life beyond getting mets if that was my result.
Best wishes to everyone. Probably signing off now until we meet again . . . . .
Hi Wynthorpe - great to hear your news. I had been wondering, following this thread because I too am awaiting a repeat bone scan result. It’s so important for us all to “rejoice with those who rejoice” just as it is to surround with care those who receive disappointing news.
About the “box”… on the day I went to find out my diagnosis, I found a shoebox at the recycling bank, said “Faith” [Shoes!] - I decided to take it home. Its contents now include my hospital info and leaflets about my medication; booklets from BCC, Cancerbackup etc.; notes of questions to ask at my next hospital checkup; and many of the cards I received from family and friends (and from a few people I’ve never met). On the lid there is a “thought for the year”. It’s one of the ways I’ve coped with bc - looks as if this Forum is becoming another.
I had a similar dx as you in December 2005 and I had the same treatment as you but I take tamoxifen which I hate. Can I ask why you chose not to and what the onc said - just in case I decide to throw them in the bin!!
Also I had a scare last November with rib pain that I had for weeks and eventually I ended up having a chest x ray. I was scared stiff but it was all clear. Anyway the amazing thing was as soon as I knew it was all clear the pain weent overnight!! The power of the mind eh? I just wondered has your hip pain gone now you know it is nothing to worry about?
I can tell you how I came to my decision about hormone therapy but need to stress the usual disclaimers, personal decision etc etc.
For me hormone therapy was the bit that I least liked the idea of - it clearly seems to have lots of unpleasant symptoms and puts you into a very sudden menopause. I also didn’t like the idea of ongoing treatment and psychologicall felt that it would defeminise me a little. I therefore looked at the statistics and evidence out there before coming to my decision. The official statistics for my case are as follows: 81% of people my age, health and histology are alive and without cancer in 10 years, 2 would have died from other causes and 17 would have had a relapse. Out of that 17, the figure can be reduced to 10 with hormone therapy, 11 with chemotherapy or 6 with both. I figured that, statistically if I had chemo then the effect is nearly as good as hormone therapy but a lot more short term. I was willing to live with the 4% difference in chances of relapse that not having hormone therapy gave me.
The other part of my decision making was my research on hormone therapy alternatives. There is quite a lot out there on the internet against Tamoxifen (along the lines that it is pushed by the drug companies and actually is a carcinogen itself. Although chances of BC recurrence go down, chances of other Ca go up).
I also did quite a lot of research about Oestrogen Dominance as I had an Er and Pr positive Cancer. I had myself tested and the results showed that I had this. Reading about OD also made me realise that other symptoms, previously unconnected pointed to this eg having gallstones in my 30’s and having had 5 miscarriages. An American doctor, John Lee has written and researched extensively into this and suggests that using natural progesterone (as opposed to pharmaceutically produced synthetic progestogin) balances out any oestrogen dominance (ie instead of getting ride of all oestrogen a la tamoxifen, its about keeping oestrogen and progesterone in balance and that they only cause trouble when there is a lot more oestrogen than progesterone in the system). Natural progesterone comes in a cream which I apply twice daily. Anyway, to cut a long story short, I found a well known GP in London who had some knowledge of Dr John Lee and advocated his theories. She tested my hormone levels again and prescribed progesterone for me. That was 2 years ago and I now ensure that I have an annual recheck of my hormone levels to adjust the dosage.
Hope that all makes sense. Ask again if you want any reconfirmation. Good luck.
So pleased to hear your good news. I think the idea of the black box is a good one and one we can all relate to . I have a friend who like yourself did some research (having had terrible side effects from Hormone Therapy) she too uses a progesterone cream, she could,nt find a GP to prescribe it but buys it on the net.