got pet scan 11 May plus appointments 16 and 18 May then start chemo 19 May...wow whole life changed in a matter of weeks!. Weirdest thing is I feel fine right now... Can't believe have stage 3' grade 3 tnbc. Plus got scan results yesterday which show "suspicous" areas on spine hence pet scan. Am still at work trying to figure out if can take some time, even if two three days away, with partner before chemo starts...
Steph, just wanted to say how sorry I am that you gave been diagnosed but have to wait for further tests, I can't imagine how you feel at present as it was the what ifs and constant waiting for things that I struggled with. I find the forum do supportive as you can say what you like about how you are actually feeling without having to think and be "strong" for those around you. Xxx
I just wanted to say to say how very sorry I was to read your news and send you a big hug xxx
Thank you so much for you support. I have some good friends and great family but they are all struggling too at the moment especially my parents who are in their 80s. Mum keeps saying how they can do wonderful things these days...anyway am starting to get my head around it a bit now. So much to deal with with work as well but will get there. Xxx
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
i am reeling. Went to gp four weeks ago with breast lump, loads of scans, tests etc and now diagnosed stage 3, grade 3 triple neg, huge lymph nodes. Saw oncologist today to discuss treatment and told scans show poss bone mets in spine so now going for pet scan. Start chemo in two weeks following pet scan results...will go to stage4 if in bones. Can't take it in properly at the moment but scared about chemo and pet scan results.
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
Yeah very interesting Bibi, very interesting reading indeed!
I have been referred for counselling on NHS that's due to start, umm let me think, 9 th May. Thanks for the suggestions though, as it is only a very short course and the other places are certainly worth looking into, especially if they offer those nice alternative type therapy thingies .
Bott I too shall be requesting stacks of anti sickness stuff, so you should definitely do it. I'm not phobic about it like you, but feeling nauseous sends me into a panic. It's interesting what you write isn't it about your phobia about vomiting and how you ar still determined to forge ahead. There are so many phobias about, and it seems that cancer treatment forces everyone to just 'get through' them in a way they could never envisage before. It's like the avoidance is no longer an option ( like me and my general anaesthetic) , maybe that is almost a good thing...and that is how we will view it in a few years.....as we lose our fears?
I wish when you replied on threads you could read down the different replies.....because I want to reply to a few people and can only see the last comment. Is there a way to change that ?
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
Thanks Charys, I know what you mean and survival rates from this are increasing all the time! Yesterday it occurred to me that I could still be around in another 50 or even 60 years (but then I'd be over 100!!) and look back at this diversion as a really tiny weeny part of my life journey xxx
Ok, better words came to me......
if if you did 'survival rate' for any random member of the population, I do wonder what it would be ? There are plenty with various illnesses like diabetes, blood pressure, heart problems etc. Generally people don't go round looking at survival graphs, it would be really depressing if they did, yet we get to see ours lol. There was some article in an online paper the other day where you added in all these facts and figures from yourself and your family history, it produced your 'likelihood' of being alive in 5 years. I didn't do it, but it got me thinking that there are stacks of people out there who would get poor results and how awful it would be to find that out as it stops you living in the present.
Of course there is massive hope OAD, for all we know any one of us is in the 4 percent who aren't treatable? No that sounded too negative, what I mean is that what do percentages actually matter is you are well and free of cancer? If you are in the 80 percent , as all of us most likely are, then that is great. The game of percentages gets to me a bit to be honest. As my consultant said, you won't ever get 100 percent as people pass away from all sorts of unrelated things , and this becomes more likely the older you get. my sister said 'well for all I know your survival rate is better than mine, and I don't have cancer'...which was a good point. This 'living with a diagnosis thing' is the hard bit, as everyone else is living without one and still they are just as much at 'survival risk'.
I I hope this made sense? I don't mean it to sound concerning, I was trying to be positive lolol
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!
Thank you Bibi. Yeah, that's exactly my treatment plan, and thanks for explaining things in a more positive way. I have a life Long avoidance of medication and fear of health problems and side effects. I used to have health anxiety as part of an anxiety disorder over 25 years ago, then when I got over that and became mentally very well indeed, I went the opposite way and developed an inability to even visit a doctor or take a tablet of any sort. so, this situation is like all my hells rolled into one nightmarish situation. I know it's not easy for anyone, no it's very hard for anyone, but I am having panic attacks about even putting an ibuprofen in my mouth ( never had one) so the idea of chemicals is beyond terrifying. I want to be brave and strong like the rest if you, but I can't seem to find it.
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
Thanks for joining us, although it's not nice to be here, at least we can all talk to each other and help each other out.
I know what you mean about a lack of sleep, it's a problem I have too.....just when we need most rest to cope , we get hugely less.
what chemo are you starting ? How are you feeling about it , viewing it as another individual 'hurdle to jump' ? I wish you a huge amount of strength and courage for tomorrow, please come back and say how you got on.
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
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
Hey Anita, good to see you,
I was amazed at how quick! I was only expecting to see the nurse today for dressings, but took someone with me just in case......luckily. I can't get my head round it either Anita, and have so many questions , just as you did when you got your chemo thrown in. I have to say I can't fault the team where I am being treated, very proactive and well organised, the surgeon spent AGES with me today and was really open to any questions. mind, I sat there like a semi stunned weepy rabbit whilst DH asked questions.
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
If you go to "options" at the top right hand corner of message it should bring a drop down list of options, if you click on subscribe you should get email notifications when anyone posts on the thread.
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
Yes, I guess you are right, but as she said 'we will talk about chemo if it becomes relevant' and didn't after core I just made my brain ignore it. Thanks Jobey X
We've all got to support each other through this hellish journey! Thank goodness for this forum.
I read one of your posts on anothe thread, so no spread to lymph nodes, no further sugery needed and not homone receptive? That's exactly the outcome I'm hoping for. I'm still surprised they are recommending chemo given all of this, obviously going for the full "Belt and Braces" like you said.
You'll feel better after speaking to oncologist, in fact you'll feel better tomorrow after initial shock has worn off.
THanks so much for your reply Hazel, it's so kind of you given you are having such major problems yourself too, to find the time to comfort me. Oncologist a week today. You are right of course, the surgery was done and dusted and not as bad as I thought, which you will find is the same for you I bet! I should think the same will apply to the other stages. That's my hope anyway. On the positive side, she got nice clear margins apparently so no further surgery and the wounds have heals very nicely. Xxx
Yes, it's Hazel.
Oh, I see what you mean. I expressed reluctance at the thought of chemo when the surgeon first told me I had BC. I think my actual words were "I'm not having Chemo" through tears. Again, it's the initial shock.
I'm well aware that chemo might be recommended to me also as part of my treatment after my biopsy results and I've thought about it and changed my mind back and forth quite a few times. I have been following you posts since I first joined the forum, even before I plucked up the courage to post myself. I know you were scared before your surgery (who wouldn't be?) but I took comfort in your posts about how well you seemed to be coping after the surgery and they really made me feel more positive, so thanks for that.
I've actually been thinking about you all day and kept checking the forum to find out how your hospital appointment went and I'm so sorry that you have had this news. It's a setback when you were doing so well. BUT, think about the shock and how you felt when you were first diagnosed and how well you adjusted and coped with the surgery etc. You are still in shock from learning about Chemo being part of you treatment and whatever you decide, you will get over the shock and deal with things as well as you have been.
When is your appointment with the oncologist?
Very Best Wishes Charys.
yes, it's the shock. I don't think I was quite clear, I've just grabbed my 'graph' as printed off at the hospital. Ok after surgery with no intervention, survival after 5 years 92.5 per cent. Add in hormone treatment and chemo and that adds 1.9 per cent , so taking it up to 94.4 percent.
Obviously at 10 years after treatment it changea a bit, 81 percent with just surgery, 86 percent with surgery and hormones and 92 percent with chemo and hormones.
So, I guess the bigger difference is at the 10 year mark. It's odd isn't it, I wonder what some people are given such full biopsy results and others aren't? Thanks for replying Haz ( are you Hazel?)
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.
Thinking of you. xx
Can I join in here ?
Just got got back from outpatients appointment after surgery and 'offered' FEC and Taxotere treatment. This has totally taken me by surprise and I feel terrified, totally terrified. My treatment plan prior to this was radiotherapy and tamoxifen following surgery, but as the biopsy upgraded from a Grade 2 to a Grade 3 the 'offer' of seeing the oncologist and having this chemo has been made. I now need to see the oncologist and decide if the 1.8 per cent gain I might statistically make is something I want to take on. Of course in theory I DO want to do whatever is required but I am scared of side effects.
I have read read loads of threads on here about FEC and T, most of which are horrendously negative and have scared me incredibly. That's not to be negative about this people who are posting as they are suffering and this is their place to say the things they need to for support, please don't view it that way, but there seems an absence of tales from people who are finding it relatively copeable.
so, that's why I've joined this thread as Bibi and Ruth have had a slightly better experience? IS there anyone else?
PS ... Hi to 'on a diversion' good to see you over here too ( I don't mean it's good you are here, I'm sure you know what I mean lol).
Apart from the golf 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.
So good to read this Bibi44, as its the same diagnosis as me ... Emily, I am also waiting the start of chemo and am starting to feel exactly the same. I caught sight of myself in a mirror earlier and thought how unbelievable it is that I have cancer. Hopefully we can support each other xxx
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
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.