So on 18th Feb 2016 I was diagnosed with stage 2 breast cancer. I have undergone an operation to remove the cancer and a full lymph node clearence under my left arm and I am currently waiting to start my 6 sessions of chemotheropy followed by a month of radiotherapy.
4 days before starting my chemotherpay and it has only just sunk in what is happening thanks to the shock and whirlwind over the last 67 days (to be exact). To say I’m nervous is an understatement, I am completely TERRIFIED with the unknown that’s to come but I’m assuming that’s normal?
I’ve recently realised I can no longer hide behind the phrase ‘I’m ok’ but I am starting to really struggle with my diagnosis and everything I’m about to go through. I’ve decided to attend some counselling sessions with Tenovus in a hope that speaking to someone will take the strain of keeping things in away.
I suppose the question I want to know is will this feeling of ‘my life is over’ go away? I was so positive when I found out up until I had my operation but I feel as though I’m a broken person now and I’ve completely lost myself.
Hi Emily, the answer is yes it will! Everything you are feeling is completely normal I promise you, this was me a year ago, convinced I wouldn’t survive the week! Don’t pretend your ok if your not , take help and support and don’t feel you have to be brave if you don’t feel it, I didn’t have chemo but there are a lot of ladies who have here and can help answer all your questions, if you post on the just diagnosed thread you will get plenty of support, try not to panic and just deal with each step as it happens, you have to give your self time to digest what’s happening but you can do it! Xx Jo
Hi Emily so sorry to hear of your diagnosis & distress. I was diagnosed last June with grade 3HER2+ & thought I was doomed. I had 2 ops, 7 cycles chemo, Herceptin, 15 rads & 10 years of tamoxifen & I was just thinking how happy & fit I feel earlier. Honestly you are in one of the worst bits, just waiting for chemo to start. I promise you will adjust to your new (temporary) reality. Counselling is so useful for many. You are doing all the right things. The way you are reacting is completely understandable. You will be back. I played tennis & golf the other day. Am I the same as before no, but am I ok. Yes definitely. Take good care. All the best xx
On a Diversion sorry you are facing that too. One more thought both, chemo affects us all differently, but for me it did not cause one awful reaction, it was more an endurance test of feeling a bit awful with a lot of things weariness, lack of energy, fuzzy unclear thinking, indigestion, diarrhoea (some get constipation), headaches, muscle aches, sore funny tasting mouth etc etc. Each one can be coped with, yes ok not nice, but we have paracetamol, gaviscon, Imodium, movicol etc etc. Each individual thing is not there all the time, so if you read the chemo threads, yes, there are people talking about their ailments, but there are also people going to weddings, parties, seeing friends, talking about their families & having a laugh. If you are given FEC for example, which is v.common, most of us had a groggy first week, but were back to normal weeks 2 & 3, so you arrange your social life round that. The low immunity was an issue for some, but put some antibacterial gel in your handbag & use it a lot (& run a mile from anyone with s cold). I played golf twice a week throughout chemo for example. I say all this just to give you an idea what to expect. There are other more serious complications, but it’s the few who get them, e.g. neutropenia, not the many. My advice would be: drink 2-3l of water day before, day of & day after chemo. Get a good book about diet, like Anti Cancer by Sevan Schrieber & try & exercise every day, even if you have to drag yourself round the garden for 20-30 mins a day. All those things will help you cope with chemo. All the best. You can do it ladies xx
Apart from the golf :smileyhappy: my experience of chemo was very much like Bibi’s. There was never one time when I felt really atrocious but rather it was mostly dealing with a series of minor irritations and tiredness. As Bibi says, you have periods when you can feel relatively okay and I did some part-time work for about eight days of the 21 day chemo cycle I was on (although I don’t approve of people feeling compelled to work by their employers if they don’t feel up to it). I also went to a wedding, the cinema and enjoyed Christmas, all things I would never of thought I could do when I was first told I was having chemo.
I may have been been lucky in that I only had one very mild infection that needed treating with antibiotics - I developed foliculitis in a few areas on my back when my body hair started falling out - but on the whole spent a lot less time in my GP’s waiting room than I imagined I would at the start.
My advice would be to eat as well as you can and to plan ahead and get lots of nutritious food in for the days when you might be feeling a bit rubbish. I believe that the fact that my diet was very wholesome helped me fend off infections and not feel as grim as I had expected. I found it difficult to concentrate sometimes so read a lot less than I normally do. Cooking and researching healthy recipes filled in a lot of my time and a benefit of it all is that time spent on my own at home has reignited my interest in cooking again.
Hope this helps anyone who is about to embark on chemo. You will get through the other side.
Sorry to hear that your biopsy results have changed. 1.8% chance if you have chemo?? That’s quite low, interesting.
As you know I’m a few weeks behind you, lumpectomy and SNB on 11th May. I find it strange that some people were given a Grade, stage etc. afte core biopsy, I was told nothing about that, I did ask but the surgeon said she couldn’t grade it etc. until after surgery results.
Personally, for me, I would need more than 1.8% in order for me to put myself through chemo BUT I have other long term health problems to consider as well.
It’s a lot to think about isn’t and a shock when you were initially told that chemo wasn’t a part of your treatment plan.
Charys I was given provisonal grade after biopsy but warned it may change after lumpectomy , they cant really stage until then either as depends on nodes,size and if any change in grade, so until then chemo is always in the mix really, i get 1.5 % benefit from taking tamoxifen but i happily take it as it gets me closer to the 100 % survival rate so well worth it xx
Thank you all for your messages, they are so encouraging. I’ve only just spotted them, is there a way of being notified when someone comments on a thread you’ve posted on? My 10 yr % is 88% according to NHS predict but I don’t think that includes radiotherapy. I haven’t been offered T. Love to you all X
You got your follow up quickly Charys I waited three & a half weeks & now have up to a further 3 weeks before I see the oncologist. Like you mine changed from original plan & chemotherapy is in the mix now & I can’t get my head around it. This is what I hate about it all, they tell you something you get your head around that then it changes. I wish they wouldn’t tell you until they’re certain after all the pathology results. So I know how you feel because I’m going through the same but you seem to have more information than me. X
Hi, just signed up on this site. I start my first chemo session tomorrow, not really expecting to sleep tonight but haven’t really done a lot of that lately:smileysad:
Had to have the two ops & now struggling with arm/ shoulder pain.
My head is all over the place & everything that gets said seems to go over my head & doesn’t sink in.
I just try to regard every appointment as a hurdle that needs to be jumped & can be. X
Charys sorry to hear you’re now looking at chemo. I had the same experience … Grade 2 after biopsy, then upgraded to 3 & chemo after op. Feels like a kick in the guts doesn’t it? I understand different parts of the tumour can have different grade cells hence the fact it can change (ie not NHS balls up!). Would it help if I quickly run through what each treatment is for? Surgery obviously aims to remove all known cancer cells, chemo goes on a search & destroy mission for any microscopic cancer cells that may have got beyond the immediate tumour area through the blood or lymph systems, radiotherapy blasts the site where the tumour was in case any minute cells were missed, tamoxifen/Herceptin (if you have ER/PR/HER+ve) then reduces the things that feed your particular cancer cells. So, you could say you are unlucky to have been recommended chemo or you could turn it round & say you are lucky because if any microscopic cells have pinged off the tumour, you have a way of mopping them up. I know chemo is scary & horrific (largely because of the hair loss frankly), but at least you will know you have thrown everything possible at it & done your very best in minimising the chances of it coming back. I know it’s soooo hard where you are standing right now, but that’s quite a difference at 10 years. Obviously only you can decide (& no one will force you), but if you want to chat it through more before making that decision just give your nurse a call or call the helpline of this site. The nurses on that are brilliant & were, at times, miles better than my BCN. xxx
Hi Charys. My percentages are the same as yours and like you’ve said it’s the 10 year survival that makes the difference. I want to have chemo because I know if I didn’t do belt and braces and the unthinkable happens and it returns I will never forgive myself. If it did return having had chemo I know there’s nothing more I could have done. My lifelong phobia is vomiting.I have been known to run when I see or hear anyone being sick and I can’t be around people who feel sick. Bizarrely when my kids were sick I managed to cope. I guess the nurturing mum in me overrode the fear. Working in a reception class at a busy primary has been challenging and I have picked up 2 sick bugs. Both times I panicked like crazy and all but put my hands around my throat to avoid being sick. When I inevitably was I remember thinking how much better I felt and I’ve made it through. That’s not to say my fear has gone but it is making me anxious approaching chemo.
I’ve looked at it and thought to myself it’s got to be conquered. That sound blasé but it has meant soul searching changing my mind and refusing but then I went to see the oncologist and because my wound haa massive problems healing (8 weeks now since surgery) I may not be able to have chemo in the 3 month window. That hit me hard and I realised that whatever phobia I have my desire to get rid of this is higher.
A lot of the oral drugs can be taken in liquid format although the volume of liquid can be quite high as it’s generally lower strengths for children but that may be a consideration. Good luck with whatever you decide xx
Heck, you’ve all got better percentages than me, I thought mine was good until I read yours! But mustn’t compare, there is always hope. My consultant told me that being positive (overall because we all have emotional and down days) is really important and he has seen people with a really poor prognosis survive for many years against all the odds!
Bott tell them about your vomitphobia is & do not let them stick any chemo in you unless you get Emend. If they refuse(which they usually do on the NHS) pay for it yourself.
Carys you might want to think about having some counselling before chemo to avoid your anxiety thing flaring up. This is a very stressful time for you after all. Your local Haven, Maggies, Cancer Help Centre (depends where you live) usually offer it for free along with free reflexology, massages, hypnotherapy etc. Well worth looking into ladies. I know this is mad, but I did actually work out the chances of a healthy 50 year old making it to various ages on one of my bored chemo days. I compared it to my 5, 10, 15 & 20 year %s the doctor had given & it made me feel a lot better. I had just assumed I’d be a healthy 85 year old pottering round the garden like my mum, but that’s just not true. To save you doing it here you go: 97% of ladies get to 60, 87% to 70, 77% to 75, 64% to 80 & 50% to 85. Quite interesting eh? xx
Hi charys, its always a game changer when they throw chemo in isn’t it. Easier said than done but try and not to over think it until you have spoken to oncologist,I was told I was borderline as just under 5% but when I got to oncologist he was very clear that chemo was the recommendation although ultimately my decision so that was easier than trying to make a design myself if you know what I mean. If that’s the way you go I am sitting here waiting for 2nd fec,it’s doable and I have just had a lovely weekend of family occaasions and felt really well x
Without wishing to bankrupt the NHS, the way to get Emend or Aprepitant, as it’s officially called, with 1st chemo, is to go on & on about how sick you were after your operations, how car sick you get & anything else you can think of! You might have to be pushy though, because they really don’t like giving it in certain trusts, others are fine so just postcode pot luck. If I had my time again, I would refuse chemo till I’d had that drug or pay myself. I think the guidelines allow it if you are a frequent puker, but otherwise they give you other cheaper stuff first & see how you go the first time. Fact: a lot of people don’t even vomit after FEC, they just feel sick, like morning sickness, so it’s not automatic. If you take all the drugs as prescribed & eat little & often that helps. x
Hi Steph, I am so sorry you have been disagnosed and are still having to wait for more tests and results, its a hell of a shock to have your life turned upside down in a matter of weeks, You will find plenty of support here and i hope you can gain some strength from the lovely ladies who will be only too willing to share their stories with you Xx Jo
Steph You must be devastated & in shock. I want to say that even if your worst fears come true & it is stage 4, I know a woman who has had mets for 11 years & enjoys her life to the full. There are so many new treatments coming down the pipeline there is cause to be hopeful. I had chemo next to a lovely lady who had DCIS & 6 months later they found liver mets. Her consultant said there will be a lot of new & effective treatments in 18-24 months. Do you have someone with you at home to help support you in this terribly difficult time? If not, call a friend or the helpline. They have a service, as do Macmillan, where you can ask to speak to someone who had the exact same diagnosis a while ago, who understands how you feel & might be able to give you some reassurance about what happens next. Big hugs & all the best. xx