Hi Everyone,
I was diagnosed with BC January 2009, had op 26 March 2009, removed tumour(2cm), surrounding tissue 24cm, 2 sentinal nodes, internal mammory nodes. Only the tumour was cancerous and 80% eostregen. Surrounding tissue and nodes all negative (meaning clear of cancer). It is now 10 weeks since surgery and I feel fine, in fact I have felt fine all the time and haven’t had an ounce of pain. At present I am waiting to change my oncologist and will meet with my new oncologist on Thursday this week. (didn’t get on with 1st one). My first onc said that I would have 15 sessions of radiotherapy and when I went to be marked up the doctor in rads said that I would be having 35 sessions! Quite a difference. Anyway since it is 10 weeks since surgery and I feel really well I don’t see why I should put my body through all the traumor of rads. Also I already have arthritis, diebetis (whish causes bad circulation), back pain, bad sleep pattern and hot flushes so I am loathed to take Arimidex which by all accounts can cause all of these problems, which at the moment I am able to live with. Let’s face it - I had cancer and now I don’t have cancer - it has all been removed with surgery - so leave well alone.
Is there anyone out there that has had the same thoughts as me?
Positive thinking is the way forward ! !
Kind regards to all
Margaret
Hello Mags
Positive thinking is delusional and quite a burden on some people, a burden which should be imposed upon no one and there is no evidence, clinical or otherwise, that says outcomes are improved by this.
Now I got that off my ribcage …
Arimidex does cause a lot of SEs and some of them pretty unpleasant. I get pain in my finger joints and I know some who get pains in ALL joints and can’t start the day without painkillers BUT Arimidex (A.I.s) are reported to be very efficient and I have listened to podcasts from the US where they are thinkiing that maybe we should be kept on Tamoxifen or A.I.s for more than 5 years. That won’t make many jump for joy.
Are far as RT goes then your oncologist should be able to give you a reason idea (informed and educated guess) as to how much RT will improve your prognosis. What does it stand at today? Good? Excellent? Radiotherapy is VERY damaging and the damage can be extensive, it can go one for several months (sometimes a few years) and it is most definitely permanent, irreversible and in my case a personal catastrophe. The doing of it is a cakewalk but the doing of it take a few weeks; you have to live with the consequences for the rest of your life. A tool called Adjuvant Online is used by the professionals to get calculations like “chemo will give you an additional 2% chance” or “RT will give you 20%” so although it is just a tool, it is better than a finger in the wind. Always remember though - the statistics. We all fall on one side or the other of the stats. I had an 80% chance of getting BC - I was in the 80%. I had a 20% chance of my cancer not being picked up on mammogram - I was in the 20%. I have a 50% chance of reaching the 5 year point, I hope to be in the right 50%.
In the end it will be your decision but make it with as much information as you can gather, don’t be fobbed off by busy oncologists and if necessary seek a second opinion.
Best wishes
Reg.
Hi Mags.
Like Reg says, you statistically end up in one barrel or the other, the good one or the bad. Even if you have a high statistical likelihood of ending up in the bad one, you have a chance of being the other stat. The problem is, you just don’t know where you’re going to end up.
I had all of mine cut out, no spread, so technically I have no cancer. Without chemo and rads I have a high chance nonetheless of landing in the bad barrel due to the aggressive nature, hormone receptive factor, and my pre-menopausal age. I’ve got no intention of getting this again, so for me it’s simple. I’ll take the risk of future problems from treatment against the chance of recurrence, and throw everything and the kitchen sink at it, even if neither the chemo or the rads can find anything to work on because technically I don’t have cancer anymore. And I’m doing the tamoxifen whatever it does to me. That’s my choice, yours is yours.
On the positive thinking bit, positive thinking is an aid to getting through it all and enjoying life despite it. If that reduces stress then it’s a good thing, but I think to rely on positive thinking alone for this is kind of akin to relying on luck. Of course think positively, that’s a great idea, and you could be lucky. But, the studies show that the treatments work, not luck.
That said, best of luck! 
Hi Carol and Reg
Met with my new onc today - nice guy. He explained all to me even though I know that I didn’t take it all in, at least I have been given some explanation. He suggested that I try the Arimidex for a month and see how I get on and will be willing to either change it or stop it if I don’t get on with it, so I will give that a try. He also told me that I have an appointment with the rads dept on Tuesday, although I have not heard from them. He said that I would have 25 rads plus 8 making a total of 33. So will see what they have to say.
Best wishes to you both
Margaret xx
No one can ever be sure that all cancer has been removed by surgery.
The problem with cancer is that it metastesises (spreads) to other parts of the body and when this happens the cancer is generally incurable and you die. No one can say for sure that all cancer has been removed…not ever.
The aim of radiotherapy is to remove any local cells which have been left behind after surgery. Arimidex is a ‘systemic’ treatment which may kill any microscopic cancer cells in other parts of the body.
Neither radiotherpay nor arimidex are certain cures at all, but statistically your chances of recurrence will be improved by taking them.
As for positive thinking…well some people find this helps them to cope better with having cancer…but no amount of positive thinking makes any difference to whether cancer returns or not. I also think the call to positive thinking can be a real burden on people at a time when they have enough to worry about.
Jane
Hi
I have to make a comment on this.
I was what was classed as the good group for recovery. Low grade cancer. I had rads and took tamoxefen and mine came back two years later and had crossed the body. Everyone is different and noone can really say for sure what you should do.
I wish that i had followed my gut feeling and had my ovaries removed straight after my breast cancer but was told by everyone that it was not necessary, i was in the best group for recovery etc etc.
Maybe you need to ask more questions and do what is right for you and if you are not happy with the answers you get ask to see someone else.
Good luck with what you decide and do what you feel is right for you but please make sure you have all the facts and information first.
Good luck
Hi
To add to this, I also had a similar story to Lupin when I had my 1st dx in 2003. High probability of remaining cancer free, low grade, no node involvement etc. However, it too has come back. I was told at my primary dx that a WLE is no good without radiotherapy afterwards. Personally I wouldn’t take the risk. I also think mine returned after my 2 years of Zoladex had finished and my body started producing oestrogen again.
Nicky
I have been on Arimidex for just over 6 months.
They have been 6 difficult months dealing with side effects of Arimidex, oopherectomy, rads and the legacy of chemo - but things have improved enormously and I am feeling very well indeed.
Very very well.
Trying Arimidex for just one month is bad advice - give it a good long go. It is the best drug there is for ER+ cancers and to not take it is to deprive yourself of an opportunity to beat this stinking disease. Triple neg women don’t get any choice -there are plenty who would have loved to have had another weapon in the armoury.
Positivity will not cure cancer. Surgery and drugs are our only hope.
I’ve just read this thread again. Regina I’m wondering why you say that radiotherpay has been a personal catastrophe?
Radiotherapy is an important part of breast cancer tretament for many women…and I think remarks like yours should be explained so that women aren’t unnecessarily put off.
Jane
Hi Regina, yes, I echo what Jane says, it would be useful to hear your experience of radiotherapy. I finished 15 sessions a couple of weeks ago, after 4 months of chemo. I did find rads easier to cope with than the chemo for sure. However I have had problems with raw skin in the last week but, with the approriate dressings it is now healing nicely. Is there something else that can happen as a result of radiotherapy that they don’t tell us? Honestly, this bc thing just gets better and better…Pat x
Pat - here is a link to some possible rad side effects…
cancerbackup.org.uk/Cancertype/Breast/Aftertreatment/Afterradiotherapy
Must admit reading through them I have quite a few… but in my case there were a necessary evil… I had to have a very strong dose of rads due to having IBC also using a bolus for the first 15 to give an even higher dose to the skin layer…
I must admit the onc didn’t explain at all that certain things were more or less 100% likely to happen… for example i didn’t know they were putting the bolus on my skin “for as long as it could take it…” ie until the skin started to break down… I was told the usual “your skin may burn… but we never know whose skin will… etc” before hand…
Likewise I now have lymphodema in my left arm - when I mentioned that to the onc she just said “Yes - I thought you would get that…” and likewise to my current breathlessness and sore ribs and sternum…
But - having said all that… it was as i say a necessary evil as given the type of cancer I have high dose rads was the only way forward… just wish the onc had been more honest with me…
Theresa
I had a 15mm lump and no node involvement, I have just finished 15 rads, yup , bit of a lightweight compared to some, only ever used my asda £1.99 aqueous cream and have had no probs whatsoever… as with most things different people react in different ways,yes you will hear of all the side effects but am sure that I’m not the only one that didn’t have any problems…so far… Good luck .
Sandra x