Hi I am new here. I was diagnosed on 15 March with invasive ductal carinoma grade 3 in my right breast and an inconclusive result in my left breast after core biopsies. My head is reeling and I just can’t take all this in at the moment. I have to start chemo on 23 Mar and I am dreading it. 6 months of chemo followed by a full mastectomy and reconstruction.
The thing that gets me most is the hair loss as daft as that sounds, I don’t want to lose my hair and feel like throwing myself on the ground in a toddler style tantrum - as much good as that will do. I am struggling to deal with other peoples reactions to me as well as I now feel I am not me but am me + cancer. Does anyone else understand what I mean?
Sorry that is a long ramble and probably doesn’t make sense, that is how my brain feels at the moment.
Hello Jo C
So sorry you have had to join this club but a very warm and reassuring welcome to you.
With regard to hair loss…oh yes I know what you mean completely. I am only just about to start my journey with a lumpectomy on 29 March and once I have confirmation that they have removed it all I to will start chemo for a five month stretch…OMG that scares me no end!!! Please try to understand that you are not alone in your fears, worries, sadness we here are all going through the same thing just at different stages. The Big C is in all of us and like you we know we want to be free of it but we have to go through the process. Once the process is complete you can start your life once more, its just on hold a bit for a while.
Don’t apologise for rambling, I did just the same two weeks ago when I first found out I had “IT”!!!
Sending you much love and support
Tracy x
Yup, know exactly what you mean. I’ve had my first chemo and I’m just waiting for it to start to drop out - I wish it would just bloomin’ well get on with it!
You might be interested in taking a look at the cold cap. This is where you effectively “freeze” your scalp and so the hair shedding is minimised, and it works very well for some people. That might make you feel a bit more in control. There’s a thread around somewhere on cold cap that you might want to read, the ladies who have perservered with it have had varying degrees of success with it.
And of course I send you all the usual welcomes to the club, sorry you’ve had to join. The shock leaves you completely reeling. There are several people in the same position as you, chemo then surgery, who are a bit further along the line. Hopefully they’ll be along soon to offer some reassurances.
Good luck for 23rd.
CM
x
Hi jo c, I just wanted to wish you luck at the start of your treatment. I know exactly how you are feeling as I have been there. The hair loss was the hardest part for me as well. I used the coldcap which slowed down my hair loss but I did need to wear my wig after the 4th treatment. I had chemo/rads and ld recon and my last operation was in october last year. My hair has grown back just as it was before and is now shouder length. I hope that you find the fear of losing your hair is not as bad as the reality. Good luck x
Hi Jo C!
I was diagnosed in Feb and started chemo three weeks ago. I’ve got a grade 3 lumsp about 4cm big and of a tricky kind so I’m on 6 mths chemo and then surgery. I was absolutely scared witless to start with, and scared of losing my hair too.
Three weeks after starting FEC chemotherapy, I can honestly say I feel ok, people are being fine about it, and losing my hair was only scary before it happened. Bit nauseous for a couple of days, couldn’t taste a lot for a few days, couple of days of wobbliness when off steroids, couple of days of being tired, plenty of days when I’ve felt absolutely normal.
Now I’m wearing gorgeous scarves and hats and wigs and people are more ‘wow’! than ‘oh you poor victim’.
Be utterly sensible about taking all the right things for side effects. I took ginger supplements and had hardly any nausea really and there’s good science behind it - well worth trying. And be as sociable as you can - friends and family and having a good time makes a big difference to outcomes (another bit of good research) so find buddies who care about you and enjoy them all you can.
Anyway, there you go - positive story. Some don’t have the same experience, but please don’t think that it’s all going to be 'orrible. It might well not be.
Hi Jo C,
I completely understand where your at because I have an identical diagnosis told to me yesterday Ductal Grade 3 BC some of my lymph nodes are slightly touched by it although we still dont know until we get the final results from the biopsys. I too have to have chemo, full mastectomy and node removal, and radiation. Wow Its a lot to take in. Also peoples reactions are strange, generally so far my family have cried and I have not (I did all my crying last week whilst waiting in agony for the results). I have and always have had waist length hair so the thought of losing it is upsetting but it will grow back and we will be living without cancer.
At least we are on to the next stage which is the action part the part where we fight this blasted thing with all we’ve got right!
Sending you lots of HUGS love and light from someone who understands
Sarah xx
Hi,
I also had a grade 3 tumour diagnosed in September, I started chemo in December and my last 1 is scheduled for 31st March. It is amazing how quickly the last 6 months have gone. I started to lose my hair 2 weeks after the first session, kept it for Christmas then shaved it just after.
I just wanted to say that I thought I would never wear a wig, but the ones these days are great, after all, all the Celebs are wearing them these days. My first one was similar to my original style, but a bit blonder, everyone kept complimenting my on my new hairstyle. Since then I have also got a brunette bob and people say it really suits me, it is a style I would never have tried normally.
I know what you mean about not feeling yourself, it took me a while to get my head around stuff, and you definitely end up with a different attitude to life.
Hi JC, I am starting my chemo on 23 rd too, I am having Taxatore and Herceptin , 6 cycles ,then prob full MX and node clearance ,followed by rads and letrozole and herceptin , If you would like a buddy to compare notes etc I would really welcome your company.
Jean
Hi everyone
It’s so sad to see so many new people that find themselves with this s***y disease. I bring words of hope. I had grade 3 with 1 lymph node involved. Lympectormy and lymph node removal Oct 2009, followed by chemo and rads. I’m about 10 months post chemo now and, apart from the tamoxifen induced hot flushes, I’m fighting fit! The hairs grown back thicker than before too. It’s not easy and everyones journey is different, but it is doable. i never thought i’d get out the other side but I did and If I can, so can anyone! If anyone wants to ask me stuff, feel free.
Take care
Julia xx
Thank you everybody you have given me some hope. Jean I would love to have a buddy to compare notes with throughout our treatment.
I am supposed to be having 3 cycles of AC followed by 3 cycles of Taxotere. From reading this forum that doesn’t seem that common but I have no idea why it is different.
I agree that waiting for the results are awful, but I didn’t cry until they came back and then I have cried for England. I had a PET CT scan yesterday to see how far it has spread so am now back to waiting for results again.
Julia I b****dy hope my hair doesn’t grow back thicker - its extremely thick and barely managable now! 
Thank you for the welcome, you have all made me feel a little better. My friend has said she will come to the wig shop with me which is great and a real relief, I don’t trust my husband to tell me what suits but I know my friend will be totally honest.
Love and lots of strength to you all, I can only admire your positivity and fighting attitudes and hope I will start to feel the same soon
Jo
x
Just a quick suggestion to those with long hair.
If you want to stick up a middle finger to cancer, take a look at littleprincesses.org.uk, which is a charity that provides wigs for children who have lost their hair through chemo or other reasons. They take donations of hair longer than 10 inches, and I felt that by donating my hair rather than just chucking it in the bin I was able to help others who could use my hair even if I wasn’t allowed to keep it.
Do take a look at their site, it might make you feel a bit better about putting your lost hair to some positive use.
I havent had an official diagnosis yet in terms of stages or sizes or anything. I went for a callback on a routine screening, and had an ultrasound and core biopsy to be told by the doctor" Do you want me to be honest, it is bad"… Now me and my parter are terrified waiting for next Friday when we go back for the official results.
I guess like many of you before it happened I haven’t given this subject much thought before, and like many of you now gone through the range of emotions trying to figure out exactly what “it is bad” might mean.
It is nice to discover that there are so many others out there for people like me, and you. But if I am honest I am just terrified.
Hi sjj99 and welcome to the BCC forums
In addition to the support you will receive here from your fellow users please feel free to call our helpline on 0808 800 6000, the lines are open 9-5 weekdays and 9-2 Sat and our team are here for you
Take care
Lucy
Oh my goodness sj99, you must be at your wits end. I think the doctor should work on his bedside manner - ‘it’s bad’ is not a phrase I have ever heard and not helpful to you and your husband whilst you are waiting for results. How insensitive.
We all understand completely what you are going through and waiting for test results is the hardest time, once you know what you are dealing with things will become calmer. I hope you don’t have to wait too long for your results - have you got a breast care nurse you can talk to? The helpline on this website is great too if you need a chat.
Please keep us posted, remember you are not alone with this.
Rachelx
sj99
Blimey - that doctor must have been on holiday when they did the ‘How To Deal With Patients Senstively’ part of the course.
You are in, what is without doubt, the worst part. Not knowing and waiting to find out drives you insane and it’s only natural to fear the worst. However, once you get back your results - whatever they may be - you will begin to feel a little better, a little more in the driving seat.
‘It’s bad’ can mean a multitude of things - which is why it’s so crass a comment but it may not be the ‘bad’ you are thinking.
Keep us posted - as pinkrose said, we are all here to support you. x
Thank you pinkrose and staycalmandcarry on for replying. It is nice to know that people are out there, and no doubt in the coming months this forum will become a very important part of my life.
Thanks again.
Hi sjj99, you are in an awful place right now and I know how it feels as its less than a week since I was there myself. I got told during my ultrasound there was cause for concern and that is bad enough but just to say it is bad is appalling.
If you need to talk just let me know, I am here. As staycalmandcarryon said there are a multitude of ‘bads’.
x
Hi sjj & jo,
Reading that a consultant has said ‘it is bad’ sounds quite cruel and unnecessary but it is strange reading your posts brought back memories for me 21 years ago when I was first dx. I had a needle biopsy and the onc told me it was very unlikely to be cancer - I had all the right set of things like breast-feeding, age of periods starting, didnt smoke etc. - all the odd things back then they seemed to measure your risk against. But it came back inconclusive and I had to have it done again. That time it was the consultant, an elderly lovely gentleman. He said “my dear, this is bad” but said it such a gentle caring way how could I be angry or offended. He told me the truth but no one could fault his ‘bedside manner’.
Re the hair loss. One of the chemos I have had has been taxotere and was told back then it was definite hair loss. Being the stubborn sort I said I wanted the scalp cooling just in case it did work. I think I was one of the early cases that the Marsden had where there was no hair loss and the scalp cooling was offered after that. If you are going to go for it my advice would be to have your hair cut short beforehand. That way the cold penetrates well. It’s a good idea to have used plenty of conditioner too. Not sure what else to say because the type of scalp cooling has changed a lot. It is much more sophisticated these days. When I had it, they used several ice-packs moulded round a polystyrene head to get the shape. They then bunged it on your head, swathed you in towels cos it would start to drip, the longer the drugs took to infuse the longer you had to keep it on! But it worked! Hope all goes well for those starting out on their treatment. You have many here willing to share their experiences and it really helps to know you are not alone.
Dawn
xx
Thank you Dawn. I have been told that I can’t use the cold cap (and yes the tears started yet again at that point, I am so fed up with crying but just can’t seem to help it). I am going to try the mind over matter approach (not sure that will work!) and see how I go.
The dreaded day looms ever nearer, I feel totally unprepared and really don’t know what to expect. Still waiting for my blood test and an exact time for the chemo. Have no idea where I am going or what is happening and seem to have the memory of a goldfish.
My daughter (7 today!) was in tears yesterday when she heard us talking about me losing my hair, which started me off again.
I hate this disease, my friend died of secondary cancer about 1 year after supposedly beatiing breast cancer about 4 years ago and I can hear echoes of what they told her at the time in what they are now telling me. I don’t feel I trust the medical profession at all, but am now having to put my life in their hands. I just wish this big knot in my stomach would go away.
Sorry am still in a dark place and can’t see any light at the moment. I am hoping a flicker will reappear at some point soon.
Jo
xx
Hi Jo
As well as the support you are receiving from the other uers if you would like to talk things through with someone please don’t hesitate to give the BCC helpline a call on 0808 800 6000. Here you can share your feelings and concerns with a trained member of staff who will offer you emotional support as well as information if required. The lines are open weekdays 9 to 5pm and Saturday 9 to 2pm.
I hope this is helpful.
Best wishes Sam, BCC Facilitator