I am getting a bit fed up recently of people assuming that if you only have surgery and RADs then you don’t have any problems or worries and shouldn’t be feeling unwell.
A friend of my SIL (who is 10 years clear from BC, having had chemo etc) said ‘oh that’s a doddle’ when told I was having RADs. This may sound peculiar but I wanted to say, oh i’m sorry does that mean I haven’t had proper cancer then because I haven’t had chemo?
I count myself very fortunate not to have had chemo, and can only offer my support to those who do have to go through it, ‘there but for the grace of god…’
However, that doesn’t mean that my experience of BC is any less painful, physically and emotionally, it just means my treatment plan is different based on my DX.
It just makes me feel that unless people can see some physical outward sign that you have had BC, then they treat you like you’ve had no more than a common cold.
I hope I haven’t offended anyone with my rant, that’s not my intention, I just wondered if anyone else feels this way too?
Hi Hippychick,
None of this is a doddle!! I did have chemo but would have given anything not to have had too. Rads is still a treatment that takes time to recover from but the psychological effect of a cancer diagnosis is massive it does not matter what treatment you have. In someways I feel I am adjusting to beggining to look more normal and sometimes feel the need to tell people that I have recently had cancer because people say I look too well. I have come across people who like to glory in their storey which has to be so much more dramatic than yours dont let those people upset you.
Jano
I am 100% with you. Even the BCN that I first met made me feel like this was an easy routine thing to get through and totally mismanaged my expectations and those of other people around me.
Now I feel guilty if I’nm having a bad day and people think I should be totally over it amd moved on by now.
These forums are evidence that there are people who have had a much worse time, but that doesn’t mean ours was easy.
I have some sympathy with what you are saying but as someone who was led to believe that I would probably only need surgery and rads, but then had to go on to have chemotherapy , I do think you have maybe missed something.
It is not just that chemotherapy is very debilitating and goes on for so long (so after that rads really doesn’t seem so bad) it is also the implications for the staging of our cancer that are implicit in our needing to have chemotherapy.
Yes, we all share a diagnosis of breast cancer which is devastating to us all - but if we have had chemotherapy it indicates that our cancer has spread to our lymphatic system so our prognosis is worse.
Having said that, BC is not a competition to see who copes best …or who has the worst side effects etc etc - though it sometimes seems a bit like that on the forums. I guess we all have different coping mechanisms- I felt quite pleased with myself when I was fairly OK on FEC - but then felt extremely sorry for myself on Taxotere!
Hope you are both soon feeling better after your bad experience of rads. and good luck to you to remain NAD (No evidence of Disease) …which is what we all hope for ourselves and everyone else.
Thanks Elsk, it’s good to know I’m not the only one that feels this way…
Topsymo, If I have missed something I do apologise; I fully appreciate that not having chemo means my cancer is of a different grade/hasn’t spread, for which I am eternally grateful. I don’t wish to minimise any of the feelings/treatments that you or others here have experienced.
My point is just as you say, BC is not a competition it is a very scarey illness that knocks us all for six and all I am asking for is some respect from those people who seem to think it’s a walk in the park.
Thankyou Jano, that is how I feel, people think I look so well, and they have no idea how I am actually feeling, just having this experience has made me feel as if I have lost my sense of safety. I’m glad that you are adjusting to beginning to ‘look normal’ as you put it, stay strong.
I know exactly how you feel and I am doing Chemo… and just to add that I have no node involvement so it hasnt spread to my lymphatic system…
I am also working and people say wow how I look good but deep inside Im falling apart… I can put make up on, wear my scarf and crack on and blub in private…I dont think anyone really understands until they have been through it, whether is chemo or radio or hormone treatment…
I have just read a fantactic book my lisa lynch called the c word… very funny very real and very me…
We all have different forms of how we deal with it… but I do agree with you… totally…
i couldnt have said it better myself, ive had wle snb and 15 x rads and my exprience is the same i take my hat off to allof you that have gone through the horror of masectomy and chemo and do count myself as lucky BUT as you say as there are no outwards signs that anything is wrong everyone(including my own children)seem to think i should be over it now!!! i know certainly i would never have thought that the emotional rubbish that comes with BC would be this bad and that the fatigue that creeps up and gets you when you least expect it would be as bad.
sue
I had chemo rads and surgery and to be honest I actually found the rads to be the most stressful part( travelling and machine breakdowns), but because I had come through chemo people assumed that the treatment was almost over and BC was beaten.
I got fed up with saying ‘No’, treatment is only the beginning it will be in my head for ever.And now that I have finished active treatment and am trying to get on with my life it is assumed that it is all over.
Your diagnosis is the same as all BC sufferers but everyones treatment is tailored to their own needs, you will worry and fret the same as the rest of us so rant all you want.
Sorry Topsymo but my BC hadn’t spread to my Lymph nodes but I have had chemo (also going to have rads, herceptin & tamoxifen). Also the lump was only 2.5cm. I thought it was more to do with the grade that means you have chemo or not - mine was grade 3. However I only had lumpectomy.
My mum on the other hand had a mx but no further treatment, but I would not say she hasn’t had it as hard as me. She still has a lot of pain from her reconstruction, whereas I have no pain.
I don’t think the type of treatment you have makes any difference. You have still been through someone telling you you have cancer and all the pyscological implications of that.
We all just have to do what we have to do to kick this thing into touch.
I personally don’t think any of it is an easy option. I too have had surgery, chemo and now start rads on Tuesday - already started tamoxifen and will start herceptin soon so finding it hard to find anything that I don’t have to do but I am not competing with anyone I would LOVE not to have to do any of this but I am not prepared to die early if there is anything I can do to prevent it.
My tumour was 1.8 cm and no nodes but still have all the above due to the nature of the beastie - ho hum
my best advice would be to focus on getting through whatever treatment you need and on a happy healthy long life and never mind what other people think or say
I’ve been thinking about this since I posted on Saturday - trying to rationalise just why it is so hard even with just breast conserving surgery and rads - ie no mx and no chemo.
It is definitely the psychological effects that are common to all of us and have an impact way beyond any specific physical treatment. We’ve all been through the shock of being told the initial dx, then the agonising wait(s) for further results following surgery and biopsies. We’re all told that a positive attitude is good so we’ve put on a brave face for family and friends and taken whatever sleeping pills and other drugs are needed to get us through.
Even with just WLE and SNB and rads (plus additional surgery for a massive haematoma) my breast will never be the same as it was before and I have definitely lost any trust and pride in it. I am almost fanatical about checking for new lumps (I found the bc one myself) and have already been back to the triple assessment clinic for one false alarm. I have backache and rib and hip pain and have niggling worries about what that might mean. My risk of mets is only 3%, but my risk of bc originally was lower than that and it still happened. That’s the other thing - I have become an expert on statistics on risk and survival rates.
At work I listen to my colleagues’ banter about holidays and nights out and I wonder how long its been since I was that carefree. When will I get to a point when bc doesn’t dominate my waking thoughts and sometimes my sleeping ones too? I’m downstairs on my own again now in the small hours of the morning.
This whole process is an intensely emotional one for all of us, no matter what the physical treatment consists of. We go through a cycle of shock and grief for what we have lost, which is really all about the way we were before bc. I know that the acute phases of grief don’t last forever and there will be a point of acceptance and the ‘new normal’. Until then, these forums are a real help to support those of us who need a rant from time to time - we are deifnitely not alone - and it is wonderful to see posts from people who are ahead of us in the journey who give us hope that it will get better.
Good luck to all. I am going to try and get back to sleep now - got to go to work tomorrow looking bright and cheery!
You rant all you like. “Well” people do not understand why we look normal and not ill and most of the time it is easy enough to hide it from them. Last week I had to go home at 10am from work because I was in such a state about my upcoming appointment for my 1st years check-up and mammogram. Could not sleep kept crying etc. The slightest ting set me off even the ad on telly where the chap says today was not all about cancer. Most days are about cancer to us.
I did get the all clear on Thursday and now feel that I can look forward but no doubt sooner or later I will think of another lump or something.
good luck to all of you whatever your treatment.
Wendy x
Hi Hippychick
Just to say that a diagnosis of BC is devastating and has such an impact on each of us emotionally and physically whether we have chemo or not. Rads can wipe anyone out and physically having to attend every day is draining. People who haven’t experienced it don’t always know what to say and I think it’s their own coping mechanism by trying to project onto us that we look well etc. Keep strong!
I have had chemo and unfortunately I have been diagnosed with secondaries so going through chemo again. I take each day as it comes and reading everyone’s posts on here keeps me going.
Jenwren I agree totally those who don’t have it need to say something ! I feel sorry for their position it is very difficult to see someone you love and care about being so ill (regardless of the treatment schedule)
Elsk how do you calculate the chance of mets ? I probably don’t want to know but…
Hi
I’ve read this thread with interest. I did mastectomy, chemo, rads but with the help of my prosthesis and (excellent) wig I look “normal” and am told how well I am looking. I am triple negative so no herceptin, tamoxifen etc for me which means that I am not having to cope with the side effects of those but neither do I have the help they might provide in preventing recurrence.
I try and be positive, take plenty of exercise and do things I did before - although I get frustrated by how soon I get tired. I agree that people feel a need to say something and the one that is really irritating me at present is “you can put it all behind you now”. No! If I can never be given the all clear I can never put it behind me and that is about having bc regardless of the treatment.
Joss
On the risk of mets question, I didn’t calculate it but my onc did using a computer program called Adjuvant Online where he could input all of the details of my pathology report and it spits out all kinds of recurrence, mets and survival rates. Mine was basically that it was a Tubular cancer which is known to be less likely to spread, it was small (1 cm) and there were no lymph nodes involved. Any doctor can have access to this pgram and it should be used to help fine-tune the adjuvant therapy such as rads and hormone treatment.
I only know about it because I challenged having to take Tamoxifen and he realised that it only reduced my risk of mets and death from bc by .06% - from 3% down to just over 2% so it was a no brainer for me to stop Tamoxifen as the SEs were so bad.
I am a great believer in being as well-informed as I can be about what is being done to me - it helps me to feel like I have a bit of control over this.
I think we need to distinguish here between the psychological/emotional effects of BC and the physical. We all suffer the psychological ones as we’ve all had our mortality challenged, and those reactions vary enormously between individuals. Someone with a poor prognosis may cope well, while someone else with a good prognosis copes badly. I assume it’s partly due to our personalities and partly due to what else is going on in our lives and what support we get.
However, on the physical side, please don’t try to tell me that it’s just as hard having a lumpectomy & rads than 21 months continuous treatment - mastectomy, 8 cycles chemo, 4 weeks rads, 12 months herceptin - coupled with the ongoing side effects of 2 1/2 years (so far) of tamoxifen. Quite frankly rads was a walk in the park compared with chemo.
I’m not trying to belittle the experience of those who have had it easier, indeed I really wish I was one of you, but I think you can see why I think this thread is somewhat controversial. I know we all come on here for support, and everyone deserves support whatever their prognosis or treatment plan, and I am more than happy to do that, but the 24 weeks of my life doing 8 cycles of chemo were the longest 24 weeks of my life, and I’m a bit miffed when someone says that not having chemo is just as hard.
I’m sure that the original ‘rant’ in this thread was not directed at anything that anyone on these forums says, but rather what people around us say that can be insensitive. This isn’t a competition between us and we all need the support of each other - even those that come onto the threads while waiting for their initial dx who may end up not needing any treatment.
I think your first paragraph summed it up perfectly. My heart goes out to you for what you’ve been through and I consider myself very lucky that I didn’t have to face that much physical treatment.
I haven’t been on for a few weeks. Had 2 WLE and the rads. No chemo and now it’s ‘finished’ everyone thinks I’m ok and it’s ‘all over’. Except it isn’t. I feel as though I live it and breathe it every minute of every day (and those looooong nights). I deliberately stopped reading the forums etc to try and remove myself from it all a bit (didn’t help). I had started to think it was just me being stupid and over emotional. So relieved to read your posts and think thats me, thats how I feel - it’s such a relief that it’s normal! Been back twice because large lumps have developed (both cysts and been drained) But now theres another lump and I feel a real nuisance going back again but the worry of what if is driving me mad. Have an appt booked for post rad check up on 17th May so guess I’ll wait til then. Will ‘normal’ ever return? Feel better for just being able to say it and know that there are people out there who do understand.