Hi to everyone,
I have only posted on here a few times, I read the posts most days in the hope to find someone like myself.
I am so sorry if anything I am going to say offends anyone but I feel so low and isolated at the moment.
I was diagnosed in Jan 06 at the age of 44 with Grade 3 infiltrating ductal carcinoma right breast ER positive 8/8 HER 2 negative 5cm tumor and no spread to any nodes. I was premenopausal at the time.
I underwent 6 x fec 75 chemo followed by Radiotherapy 40gy in 20 fractions with 10 gy boosts which finished in July 06. I was then put on Tamoxifen and underwent new biopsies in October 06. A week later I was told that there was no sign of the the tumor and because of that there would be NO SURGERY at all. In Jan 07 I was tested to see if I was post menopausal which was confirmed in April 07. Because of this they moved me on to exemestane.
All of my treatment is so different from everybody else’s that I don’t seem to be able to find anyone to talk to about how I feel. By that I mean that I feel a fraud in some ways, I feel that because I have no visible scars from this cancer I feel guilty at feeling so low because everyone else appears to have been through so much more than me. If I mention to other breast cancer patients at my clinic that I have had no surgery their attitude changes towards me because 9 times out of 10 they have undergone drastic surgery that has left them feeling devastated by their appearance and they tell me how lucky I am. I know that I am lucky in that respect of course I do, but I still have the same problems as everybody else with the 6 monthly checks, yearly mammograms and bone scans. It has got to the stage where I now don’t talk about my feelings or treatments to anybody because I feel so guilty at feeling so depressed when other people seem to have suffered more that I did. I cry when I am alone, which I am now, and always put on a brave face in public but inside I am falling apart because I am terrified that it will come back because I was told by my oncologist that the reason I am on Exemestane is because I fall into the high risk category. I went to counseling to be told how wonderful I should feel now it was all over and that I had got away with no scars to my body. Even when I go to get my prescription, which has to be ordered in because of its cost, they tell me how “lucky” I am to be on this drug. Well I don’t feel lucky, I feel angry and want to scream at them. I feel guilty at not having to have had surgery and then feel guilty at feeling so low because I should feel lucky . My head is a mess because of all the emotional conflict and so is my relationship with my partner. I push him away all the time and don’t want any physical closeness basically because I too don’t feel sexy because of the weight gain when I was on steroids. I know this sounds dreadful but I sometimes wish I had physical scarring because then people might understand my pain and see how awful I feel. I cant move forward I feel stuck all the time. I live in 6 monthly chunks like all breast cancer sufferers do because although my initial treatment lasted only 8 months I still have invasive cancer which stands a high risk of coming back. Like I have said previously I am sorry if I have offended anyone but I need to vent somewhere and get some of these feeling out of me on paper.
Is there anyone else out there who understands where I am coming from or has had similar treatment. I cant find anyone that has been moved of Tamoxifen after only 9 months or anyone taking exemestane.
Dear Han1989
I am sure that you will not have offended anyone and this site is there for us to vent our feelings. Please do not feel a fraud you have had a really tough time and like us all still have the worry of having had this dreaded disease.
I was diagnosed Dec 06 age 44 and although I had surgery (WLE and SNB - overnight stay in hospital) I didn’t have to have chemo ( 12mm lump and no nodes). I think my surgery with 2 small scars - hardly noticable - was a doddle, compared to going through chemo!! I too had rads (25 sessions) and tamoxifen for the 5 years. 2 months after rads I hit a low and went for counselling and they suggested reiki sessions of which I have had 4 so far and they are calming. I was also given a 20 minute relaxation cd to use at home each day and advised to sniff (sounds dodgy!) frankincense oil before I go to sleep as it is calming! It does seem to be helping.
Like I say I feel mine was an easier journey than yours - yes a physical scar but no hair loss, sickness, side effects) but we all have the same fears about this.
Please try and see a counsellor again or look at some relaxing therapies. We are all in this together so chat on here also - we understand.
Hoping you feel a little better
Shorty xx
I feel so sorry that you are finding it difficult to come to terms with your treatment. Let there be no doubt about it - you have breast cancer with all the trauma and anxiety that comes as part of the package. I think your well-meaning friends are just trying to encourage you - no doubt they sense you are feeling down and think it helps. No one truly understands how any of this affects us unless they have been there too - that is why these forums are so good. We can let it all out and know that it will be seen and heard by people who do understand what you are saying.
My first dx was not dissimilar to yours in that I had Infiltrating ductal - to my left breast though - it was Grade 3 and i was given chemotherapy first in order to shrink it as it was 5cm too. The chemo was so successful that it reduced totally, and after 35 sessions of radiotherapy could not be found. So I had no surgery. This was all 17 years ago now - and i have had recurrences - plus all the surgery etc. since. But i am hormone negative so dont have to take any of the hormonal drugs.
I think a lot of your problem seems to be in getting others to acknowledge that things are tough right now - so maybe like Shorty suggest you need to look outside your circle of friends and seek some more expertise help. Maybe give the folk at bcc a ring to talk it through.
I am sorry to read that you are feeling so low at the moment. Can I suggest that you give our ‘Peer Support’ team a call, this service aims to put you in touch with someone of a similar age/diagnosis/treatments to you so that you are able to talk to someone, by telephone, who has an understanding of how you are feeling. This link will take you to the page containing more information and contact details for the team:
You are also very welcome to contact our helpline on 0808 800 6000 for further support, information and a ‘listening ear’, the line is open Mon-Fri 9am-5pm and Sat 9am-2pm.
Please don’t feel sorry you have expressed all your feeling. You’ve helped me to write this. I too do not want to offend anyone. I have had similar thoughts because I had a WLE 19mm, grade 2, nodes clear, ER positive 5/8 and my surgeon was so good I don’t think anyone will be able to tell once the scar has healed. Whilst I was going through the dx and op I was a very busy and didn’t have time to look too far ahead, now that I have had a period of 3-4 wks without hosp visits, I’m waiting for rads to start next week, I’ve been a bit lost. My family and friends have been great but because I carry on as normal and appear to have had little done I find it hard to express my fears. I don’t want to upset anyone by talking about the possibility of the treatment not being a success or of it coming back. I also find it hard because I know I’m lucky that my appearance has not changed but deep inside I’m petrified that I will be told further surgery is needed. I can’t relax and accept how lucky I have been so far, my mask is beginning to crack. This is where I find this site so helpful and I’d like to say thanks to everyone.
Love and best wishes to all
Caz xx
How can you possibly be a fraud having gone through chemo and rads. I do understand what you mean in a way though, I have got plenty of scars from mastectomy and reconstruction but I didnt have to have chemo and I feel I got off light compared to others.
You have no reason to feel guilty I should image surgery is a doddle compared to chemo, so well done you for getting through it, I don’t think people realise what they are saying when they call us lucky for one reason or another, lucky would be not to have bc in the first place.
So sorry you feel so bad. Nobody with bc dx is lucky. I must admit that when I read some posts and people say they have been told they have a good prognosis I feel a twinge of envy. Wouldn’t be human not to. I want that. There should be no 'pecking order 'in this. Oh, you haven’t got it proper because you haven’t had a mascectomy/node involvment. Because I don’t wear wig/scarves and sometimes forget to put my do da in my bra it is quite obvious what I have and it is more dramatic than say, someone who looks good in a wig and is more conscious about their appearance than me. I always did tend to look a bit like a bag lady anyway.The very word cancer puts the fear of god into everyone. There are no good/bad only bad be it the tiniest of lumps graded at 1. The fear must always be at the back of your mind. Try not to think too much about what people think of you. When someone says lucky you they don’t mean you are a lucky person it just means that they wish they hadn’t had to have a mascectomy. I get a twinge of guilt every time I moan because I know that there are ladies on this site who, if they had had the benefit of herceptin (like me) they might have had an easier time of it. Everything you feel is normal. Then you can go down the road of children. How dare I feel sorry for myself when children suffer from this disease. But I do feel sorry for myself I do feel anger.The next person who stares at me then states. Well you do look well is going to get a punch in the nose. I might look well, might feel well but there are times when I am screaming inside. Take care and keep writing about your feelings if it helps it certainly helps me Lots of love Eileen
Sorry that you’re feeling bad and I’m sure your post won’t have offended anyone.
We all understand how irritated you feel when people say you’re lucky and we all understand the constant fear.
I’m on Exemestane - in my case because I asked for it. My oncologist wanted me to take Tamoxifen first but I was not all all happy about that for various reasons and so was put straight on to Exemestane.
I do hope you soon feel better but in any case please keep writing here.
Love Anthi
Thank you to everyone for your replies, they have all helped. I feel a bit better today, was on a real downer yesterday. I guess in some ways I havent come to terms with all of this but in all honesty I dont see how you can. I hope that one day I can find a new way of living. Myself and my familly expected me to return to the way I was before and I suppose the sudden crushing realisation that that would never happen hit me at the begining of the year and I took a complete nose dive from that point on. I like many other people with this B******d disease put on my brave face while having the treatment and kept making jokes about it so as to put everyone else at ease. I didnt want them to feel funny around me or act any differently. You try so hard to remain “normal” that you actually dont take in what is happening and I suppose because you do that people around you think that you are as they put it “so brave” or “oh your such a positive person” little do they know that inside you are terrified and just want to scream at the unfairness of it all.
Another reaction I have this year that I feel bad about is when I may have reached a point in the day when I actually havent thought about BC then I switch on the TV or open a magazine and the first thing in your face is an advert for Cancer insurance or telling you that because you are fat then its your fault you have got BC. Even when I walk through the town and seem to get a charity box thrust in my face every other day irritates me. And then I feel so dreadfull because these people are giving up their time to get money to help people like me and without them I probably wouldnt still be here. See now I feel awful that I have said that out loud !
I hate the constant roller coaster feelings but now realise that some of what I feel is a normal reaction to all of this. Its taken me a long time to open up like I did last night and thank everyone again that replied. I will keep writing now because I feel I can cope with it this way, I dodnt think I am ready to talk out loud to another person yet, if you get what I mean !
My love goes to everyone on this site, take care all of you.
I am so glad you are able to write down your feelings, sometimes it can be easier because you can read back over time and reflect on the progress made.
Like you I read through many postings but do not reply to them all because sometimes I don’t want to sound to cheery, sometimes I just don’t have anything to contribute. I agree there does seem to be a lot of postings from people who have had surgery, but please please do not feel that because you haven’t you are any less affected by BC.
Breast cancer treatment spreads beyond the individual and as you say those around you want to be helpful but they really can’t live your feelings as you are living them now. If I had a pound for every time someone says '‘Your so brave I don’t know how you cope’ I would be a very rich lady. I don’t think we blame people for saying that because it seems ‘the thing to say’ rather like before we had bc and people say ‘Hello how are you?’ They don’t really want to know, they are too busy, but its the polite thing to say.
In your last posting you seemed a little brighter that’s good, I find making the most of the days I feel positive helps because a moodier day is just around the corner.
Again I relate to you when you say that you can forget about BC for a while then all of a sudden the news and charity boxes bombard us. I get really frustrated when my mind will not switch off from treatments, what ifs and am I eating the correct stuff.
I have been away for a few days and managed to get into reading a really good book. I have had hours of cancer free thinking but as soon as I got home I logged on again, but there you are, its becoming a way of life.
I bought a lovely little book whilst away titled Words of Hope. Can I share one piece with you?.
Now is no time to think of what you do not have.
Think of what you can do with what there is.
Ernest Hemingway (1899- 1961)
Hi Han
I feel for you, this whole thing is a series of ups and downs, like a roller coaster and every so often I get sick of it, sick with it and boy do I scream!!! But like you it’s all inside, even when I can open up to my lovely family and hubby…oh yes I’ve had the, ‘‘you’re so lucky that hubby is so laid back and understanding’’…I still scream inside. It’s like you can’t say it all because it’s just too awful and not only that you can’t say it too often for fear of ‘going on about it’. Basically we can’t win. We’re lucky, unlucky, scarred physically, scarred mentally, struggling to be like we were…or God forbid ‘moving on and getting on with our lives’!! It does my head in because somedays we just can’t win. I’ve even heard myself say, ‘‘I’m lucky really because…’’ Like you I was dx Jan 06, I was 43, the happiest I’d ever been and the most secure with my thoughts, beliefs and sexuality. I felt good for my age and confident that my marriage of 20 odd years was solid. Over that last 22 months I have felt old…actually ancient…bald…well I didn’t feel bald I was bald…the most unfeminin and least sensual I could ever believe, even vain, confused about everything,guilty, insecure with everything concerning the future, including my ‘solid marriage’ and last but not least I have felt unhappy.
I think that over time the pain is less and I really think mentally I still have a long way to go…I really hope that you have some good days, that soon the guilt will pass and that most importantly, that you feel that you are not alone and not judged on this site. Like many of us the mental scars are deeper than words can say. I’m glad that you’re getting it down in writing, I kept a journal for 18 months and found it quite therapeutic. I actually posted it in blog form if you want to have a read. Our dx is different…but we all have had the same illness…so I hope it can help you feel less ‘mad’. Let me know and I’ll give you the address.
Take care and stay well.
All my love
Scarlet. xx
- it was Grade 3 and i was given chemotherapy first in order to shrink it as it was 5cm too. The chemo was so successful that it reduced totally, and after 35 sessions of radiotherapy could not be found. So I had no surgery. This was all 17 years ago now - and i have had recurrences - plus all the surgery etc. since. But i am hormone negative so dont have to take any of the hormonal drugs.