Hi Di, so pleased that your decision worked out for you for the better, I've had 3 Epi now 1 more to go then 16 weeks of CMF so hope to be done by the spring, whoopee, it has been doable, just counting the weeks down 🙂
I'm so pleased that this decision was a good one for you. Hope the rads go OK.
I've had 2FEC now - doable but I'm rather apprehensive about the TAX for the last three.
Good luck. Stella
been to see radiology consultant,he agreed that the benefit i would have gotten from chemo was very minimal and said he thought i had made the right decision to stop the chemo.got to wait a few weeks before i start radiotherapy-its all waiting isnt it- But i feel loads better now.hoping to go back to work next week,get back to normal.hope you are all ok and to all those having chemo,you have my greatest admiration,
bless you all,
Hi speak to your onc he can change your drug even reduce the strength of it its worth another try I thought i would never get through 6 months but i did you will find inner strenghs what have you got to loose
I'm really pleased you've made a decision - it must feel good not to have the prospect of more chemo - and that one dose will have done some good. If the rads and tamoxifen will do the trick just as well, then that's wonderful. Hope you get to enjoy the tea and wine soon.
Best wishes with the rads and hormones - at least you know it will be so much easier than this last week.
Stella,i spoke to my cancercare nurse and she advised i would get more from rads and tamoxifen than chemo,so im gonna start the rads asap.Still not able to have a cuppa almost a wk on and i havent even sniffed a glass of wine for over a week!!I do feel positive about going forward without chemo so thats what im gonna do.My hubby and 2 daughters have been fantastic but i know they will be happy when i return to my `normal `self.Best wishes to all you wonderful ladies,
Sorry you are feeling so bad - can't say I feel wonderful. I feel kind of woozy and weak all the time. I also feel as though my vision is not quite right - hadn't thought about it being the chemo, thought I might be looking through the wrong bit of my varifocals all the time!
I've not been as sick as you, but I have no appetite and can't sleep without tablets and I don't want to get dependent on them. Had 3 hours sleep for the total of the first three nights.
Any way, I certainly understand the wish to give up, but I'm sure they can improve your sickness next time. Like you I'd love to enjoy a cup of tea.
I guess I'm a fair bit older than you (I/m 58. I had a small lump, no node involvement, grade 3, clear margin not quite clear and some cells in vascular fluids, so recommended 3 x Fec and 3 x Tax. Sure seems a long 18 weeks when you are still in week one, but it will go. Hope you feel a bit better soon. Have you spoken to anyone yet about it?
You are certainly NOT a wuss. Look after yourself. Do you have good support at home?
Hugs to you. Stella
I am also new to the site and am in the same postion as you. I have had a lumpectomy and had my oncology appointment was today. My cancer is a grade 3 and it has not gone into my lymphnodes.
I have made the decision to go through with the Chemo as I feel that if I dont and it comes back - I will always wonder if I could have done more to prevent its return.
At least I will feel I have done everything I can.
If it helps - ask your consultant for their view of the % chance of return both with and without the chemo and this may help you to make up your mind.
I will be thinking of you tomorrow
Hi Di, as you were so positive about doing it and throwing everything at it, it would be such a shame for you not to carry on, as Lulu said, it really is worth maybe trying a different anti sickness drug (or 2 !) there are so many different sorts, I'm 48 and was offered it for the same reasons as you, still considered quite young for bc, good luck with your decision, thinking of you
Really appreciate your thoughts.If i was having chemo to shrink a tumour for surgery then i would continue it but this could all be for nowt as my nodes were clear,i cant help but think this may be just for peace of mind.and they said if i was older chemo wouldnt even have been offered.My cancer care nurse today said i would get more from rads and tamoxifen so i feel relieved now.willsee onc in a fortnight and take it from there,thanx again,my deepest respect to you all.
sorry to hear you are feeling really poorly. Have you contacted the chemo ward? There are stronger antisickness drugs that they can give you if the ones you are currently on don't work. You don't have to suffer the SEs in silence. One of my colleagues who had BC last year told me that the first one was terrible and she was really sick but then they changed the drugs and she was ok for the other sessions.
Talk to the nurses and demand some other meds.
P.S. You are anything but a wuss! Chemo is a vile thing...
Hi Dancing girl,
Im gonna be a rite wuss now cos im speaking to my cancer nurse later to discuss coming off chemo.I feel just like you,cant eat,havent even had a cuppa for 4 days,just water and fruit.and night time is the same,theres no let up,dont think i can do it for another 15wks.I think if it comes back then i will deal with it but i dont wanna feel like this for another 3 mths.my hubby hates to see me like this,i just wanna be like i was just a week ago.my eyesight has gone all blurry aswell,so im gonna see wot my nurse says.back to you all later,best wishes,Di.
Don't know about you Dib, the chemo knocked me right out for a couple of days - just lay with my eyes shut, sick the first evening too.
Since then I'm able to enjoy Tv etc, but have no appetite or energy.
Best wishes to you all whichever stage you are at. Stella
Glad you,ve got the first chemo over, Dib. Sorry you feel so sick though. Hope you managed to sleep OK and that you are feeling less sick now.
Reassuring to know the chemo was painless. I decided not to go for the cold cap - it certainly sounds cold. I really hope it works for you.
You gave a good description of what it was like - it will help others make up their minds.
Got my appointment for the wig first, think I'll have a good lunch before the chemo!
Best wishes to you all. Stella
Had 1st chemo today-with a coldcap.Cap was immensely painful for about 7 or 8 minutes then your brain goes numb and its ok,then they come round and put a fresh one on every 1/2 hr.So if you can stand the inital first few minutes its bearable.Administering the chemo was fine and painless but do feel very sick now-about 3 hrs on.Early days but not too bad at moment.Good luck tomorrow,Dancing girl.
Had initial appointment yesterday and tried cold cap on,its bloody freezing!!!only had it on for 30secs cant imagine it for 2 hrs but im gonna give it a go tomorrow.
Thanks for your support. I'm feeling more upbeat now. I really like your quote about being strong. I shall add it to my auntie's mantra -Accept, Adapt Achieve.
Hope all goes well with your chemo on Wednesday. I'm sure like me you aren't looking forward to it, but just want to get started, so finishing comes sooner and to beat those b****y cells.
YOU NEVER KNOW HOW STRONG YOU ARE UNTIL BEING STRONG IS THE ONLY CHOICE YOU HAVE.....
Thought you might like this quote,it applies to all the ladies on this site,
very best wishes to us all,
Hi Dancing girl,
Im so sorry you have other worries as well as coping with your own illness.Have you spoken to any of the nurses on this site,they may be able to help or at least put you onto someone who can.
I also was led to believe my 1st appointment would be within a week of seeing my onc,and I too had to ring the hospital when I didnt hear anything for nearly 2 wks.My 1st chemo is 13th so we will be able to compare side affects etc.Keep your chin up but dont try to cope alone and hide how your feeling,you shouldnt have to be strong all the time,we all need to lean on someone at sometime in our lives. Good luck,
Thanks for your replies Elaine and Weebuns (what an inspired choice of name - would suit me too!)
I've finally got my chemo date. I was originally led to believe that treatment would start this week, then when I saw the onc last week, I thought it would be next week. I hadn't heard anything on Tuesday so I rang and Fiona (the very nice receptionist) said she'd leave a note for the appt person to ring - they didn't, so I rang again yesterday, Fiona went to the chemo room and came back with appt for nurse for next Thurs (14th) and no date for start. After putting the phone down I had a major wobble. I had been quite positive (well resigned anyway) on the whole until then. It was the not knowing and the waiting that was getting me down. A friend rang and I just blubbed down the phone. Any way OH came along and rang them back and explained and I now have nurse appt next Tues (12th) and first chemo on 14th, so I feel much better about that.
I'm wary of being anything but OK at home as both my grown up sons are living at home at the moment having both worked away. The younger one had been working in France but came back after a year as he was feeling isolated and depressed. he is on antidepressants and seemed to be fine.We didn't realise that he was in denial about my illness. A few days before my op he started to behave oddly. the two nights before I went in, he didn't sleep at all and was deteriorating and agreed to see a doctor. The day of my op he took a dramatic turn for the worse and OH and other son had to call 999 and he was admitted to the mental health unit (next building to the hospital). He is now out and seems fine, but I don't want to rock the boat. Hubby and Older son were both quite distressed by it all (as was I but I missed the worst of it).
Anyone know how to find a particular comment? I saw something from a newly diagnosed lady whose husband was not coping well. I wanted to reply to her, but despite trawling the site, I can't find it.
Best wishes to you all. I do find the site helpful.
Hi all. I have just had my second FEc and it honestly hasn't been as bad as I thought it would be. The main issue is that of picking up infections, so I avoid crowded places when possible, like busy times in restaurants and supermarkets. Oh and folks with colds etc. That's why work is not an option( I am a teacher) at the moment.I have got a bit obsessed with that antiseptic gel stuff and have a handbag size one I use when I am out.
If the onc offers chemo, take it. I was so scared when he told me that I would have to have chemo, it IS the name that scares you I think. Also, the thought of hair loss. I thought I woulkd be ok with that, but until I had my wig fitted I hadn't realised how low I had felt about it. I had my hair cut short before treatment began and hated it.I am now sporting a whispy almost not there hair look now, but my wig saves the day. I am also a knitter and have knitted quite a range of hats. I am about to embark on a lacy one for the evening!
My situation is a bit different as I have quite a large lump, grade 3 and also have secondaries, so it was a no brainer to go with chemo for me. In a way that makes it easier. On the other hand I think that if you put it in the perspective of time, then perhaps your treatment will take 6 months, which could well buy you not only a little more piece of mind ( priceless) but give you more of a fighting chance at beating BC.
Had my longish hair cut short yesterday,didnt like it at first but getting used to it now and its growing on me(s`cuse the pun!) will probably keep it short when it does grow back.start FEC next wednesday(never heard of T-wot is it?)gonna try the coldcap aswell.
best wishes to you all,
T is expensive, Stella, so expensive that our health authority doesn't offer it to patients with clear nodes: my oncologist confidently decreed 'you don't need it'. Wish I had his confidence (also have a small grade 3 tumour)! Anyway it improves outcome even more than chemo without T, so I would go right ahead. It's not that bad, really, and best of all, it has an end 🙂
You will be ok i no its scary buisness and fear of the unknown chemo is doable theres plenty of women on here will tell you the same.Its saves lifes and you will be around when your grandchildren arrive keep focused on that gives you something to look forward too take care
I had a lumpectomy on 8th Sept (small 11mm lump) and lymph nodes were clear, but cancer was grade 3, so I was advised to have chemo before the radiotherapy - 3 courses of FEC and three of T. Obviously I could chose not to go with that, but oncologist seemed very sure that it was the best route. Halves my recurrence likelihood (6% instead of 13%). The T bit is very expensive apparently. I'm 58 with two grown up sons - no grandchildren, but I'd like to be here if that ever happens, so feel that it is best to go ahead - scary prospect though. Not sure if first treatment will be end of this week, or end of next. I'm about to ring and find out.
There is a reported 1% mortality risk with chemo generally- I work in the health service and know a lot of people who have had chemo for BC, and personally have never heard of anyone dying from chemo in our sort of situation, though severe infection due to low white cells is not uncommon. I think there is also an economic argument for not offering chemo to everyone who might benefit, the NHS can't afford to treat everyone so they don't offer it at all to people who might benefit less (the figure locally is <2%) but who run the same risks. At a public health level I understand that sort of decision-making, but when it comes to reducing my own risk of dying prematurely, I want it all. I had a 6mm tumour with clear nodes and was grade 3 so it was around 2%. (There is an NHS tool for predicting your own risk: see http://www.predict.nhs.uk) If the benefit had been less (eg if it had been same size etc with grade 2), I don't think I would have been offered a choice at all.
Of course it is something everyone needs to weigh up in their own individual circumstances. I am lucky to have loads of family support and really got through the chemo no problem in retrospect, but people on their own, especially with dependents, or self-employed etc, might feel differently.
Carol, this was the hardest week for me, when my hair started to fall out. You can think about it for another few days but in my experience sooner you get shaved the better, it is so depressing and grim watching it fall out. Di, that was a big step for you going short first and I know a lot of people do that. I didn't, and my long hair got everywhere that week. Actually it was a big surprise to me, who has had long hair all her life, that I looked ok with a shaved head. Maybe found it harder when my eyebrows went, but that was down the line a bit so it didn't all happen at once. Now I am 6 weeks post FEC x 6, and my hair is 2mm long, and I have a suggestion of eyebrow. It wasn't so hard in retrospect, the anticipation was a lot worse. Hang in there. Having made the decision that it is right for you to go ahead with chemo, you will not regret it.
Sorry bout my theory,my onc never mentioned the 1% risk,and of course there are many different considerations.I am a grade 3 which made an easier decision and its all about how you personally feel.I feel the risk is high enough to warrant chemo and Sandra is right about these forums,whatever you decide you will get fantastic support.
I rang the hospital today and my initial appointment is monday 11th,with first treatment on wed 13th so at last I can get on with it,and get it overwith.I have my hair cut short on Tues.Scary!
best wishes to all,
My onc told me that too Lolly, as well as pointing out the potential of life long side effects. I think it's a case of horses for courses.Easier decision to make if you have a grade 3 or spread to nodes or over 2cm, but more difficult if you fall below those figures and throw in how much ER and PR positive it is. For me being told that chemo only gave me a 2% increase in survival rate over 10 years,about the same odds as me dying from a non cancer illness or having a fatal accident. The risks outweighed the benefits for me with those figures,if it comes back I will have to deal with it but I know I made the right decision for me at that time. Cancer is so very unpredictable,people have chemo and it still can come back and people have very good prognosis and then go onto develope secondaries,we can only do what feels right for us at that time. What helped me so much was the support that came from these forums,whatever decision you make there are always people here that will help,tis a wonderful thing ! Good luck with whatever path you take.
Dib, re your theory, my onc told me that 1% of people die from the chemo alone.
I asked if I could speak to someone who had been through it and they said no as it was a confidentiality thing ! I have read so many posts on this lovely site, so many heartwarming stories and am starting my chemo today, hope you get your date soon, had a picc line put in yesterday after mentioning it, that was it straight up there, in and that was that !!! good luck everyone,
Its a tough decision Bellakate,but my theory is having chemo isnt gonna kill ya but not having it might!Also I spoke to one of the nurses on this site and she explained that having a mastectomy or lumpectomy and rads will kill cancer cells directly at the breast site.Chemo will kill any cells which may be present anywhere else in the body.Also if you dont have chemo and it returns,how will you feel? If you do have it and it still returns at least you know you`ve done everything you can.Its a horrible decision but I felt better after talking to the nurse,they also arranged for me to speak to someone who had been through it recently and that really helped.This is a great site and they will help you all they can.Best of luck with whatever you decide.Bless you all,
Like most of you the decision to have chemo or not was left to me, in fact we thought the oncologist was trying to talk me out of it, but the breast surgeon and BCN had been so keen for me to have it that I decided to go for it. Guess the oncologist was just doing his job, but also wondered if cost was influencing his advice?
I am 55 and By having the chemo the chances of my cancer returning are increased by 4% , already at 90% by surgery so adding almost half of whats left. I would never have forgiven myself for not trying if it had returned in future and believe we have to do whatever we can to prevent it. I have had 1 treatment (out of 6) of EC 2 weeks ago today and feel fine at the moment. Just a few days nausea and quite bad diaroheaa. If all other sessions are as good then definitely doable, can only hope. I have been advised by my GP not to work as it is stressful job with stress of 32 miles to travel each way and risk of infection from others in office. as someone else said what should take 4 months could end up taking a year so not worth the risk.
Hair has started to fall out today so guess the shaver will have to come out at weekend! I am ready with wig,hats and scarf etc but still a bit apprehensive about that bit.
Best of luck to everyone
I posted abit earlier to say I have had picc line done today and start chemo tomorrow at 2pm, will be glad to get 1st one out the way ! I decided as has been said befor eto throw everything being offered at it just incase and to give myself the best chance 🙂
good luck everyone with your treatment and decisions,
I have an app on Monday 4th Oct to see if I need chemo or not.
6cm dcis,7mm grade 2 tumor,clear nodes amd margin HR++,left breast with reconstruction. I have a strong family history of BC. Sister died 2years ago BC and Sister BC 6 years. I am also waiting for brac 2 gene results.
Not sure if I want chemo,would like this all over. Only starting to feel normal after opp. I am realy hopeing doctor will make all the decisions as I am not sure if I will make the right one. Sisters all think I should get the chemo to make sure cancer is all away but is it not all away when I got my breast removed? No one seems able to give answers,so confused. I just want to be better. Will doctor take family history in to consideration when he is decideing. Not long to wait now but my head is melted thinking about it. What do you think?
Appreciate your insight ,im definately certain ive made the right decision,still waiting for my appointment tho,i just wanna get on with it,never been a patient person!And im prepared for the hair loss altho im gonna give the cold cap a try,ive still got to go from longish hair to very short-thats scary enough!But im ready with the scarves etc.Now im off work aswell,i dont know if I should tell anyone this,but im hooked on jeremy kyle-so,so sad!!!!
I also had a small grade 3 tumour with no nodes, removed by WLE on April 1st, and the feeling was that I didn't need chemo until it proved to be sensitive to herceptin which makes it a little more malignant so they decided on balance that I should have it. So I finished my last course of FECx6 on Aug 24. To me there was no contest! It was doable, not pleasant of course, but I had great support from family and friends and got out the other side just fine, have just regained the spring in my step in the last week. And Di, yes you can drink on it if you feel up to it! I lost my taste for Sauv Blanc but everything else went down fine.
I was also scared witless of losing my hair, but in fact the anticipation was much worse than the event and I found getting head shaved was strangely liberating! The week before that when it all started coming out was death by 1000 cuts, so recommend go for it sooner rather than later. And we will be in hat season very soon too so you are lucky that way. I was in Rome in June and found the wig uncomfortable in the heat. But I found a great website in Scotland where I bought a fake ponytail which looked great poking out from my myriad sun hats! Will dig out the site if anyone interested.
All the best
Anyway bottom line is I vote take everything offered, write off the next year and batten down the hatches!
Tina,Thanx for the websites for hats etc,the bohemia site is fabulous and ive just spent dosh I cant afford on there,they are so good.I can wear them even if I dont lose my hair,when I get it cut really short that is.Thanxagain.
Thank God the chemo doesn't destroy our collective sense of humour then,eh? To be truthful it's the only thing that keeps me sane sometimes...:-)
When i joined this forum I thought it might be a bit too gloomy being as we are all `big c` sufferers,but now I come on it not only for the valuable information but also the great sense of humour that most of you have.It`s priceless! Keep it up ladies,
bless you all,Di.xxx
Not sure which cap you are having. With the one I had they change it every 30 mins or so. The first 5 or 10 mins are the worst, when it's coldest - after that it's ok. Take a paracetamol if they let you - helps with the brain freeze. And make sure it is in good contact with your scalp - pull it down as much as you can. It's the top of the head where most people get the bald patches - I think I was lucky because my head fitted the cap well. It took getting bc to find the one advantage of having a big head - just as well I didn't need a wig as most of the ones I tried on sat on top of my head like a dead bird!
Yeah,FEC. Glad your facing this with humour,its the only way to go.Keep those spirits up,gel,lots of luck and my very best wishes,
no, the cap wasn't too uncomfortable. Definitely bearable. Go for it. What have you got to lose but your hair? Ha ha..:-)
I am hoping that it works for me but if it doesn't I'm mentally prepared for the fall out (I think. But I can see myself having a jolly good cry when I see my curls being washed down the plughole), and all thanks to reading other women's posting on this website!
It really helps to know you are not alone....
Good luck with your first chemo. What are you having, by the way? FEC?
Belinda,hope Thursdays visit to oncology helps with your decision,its certainly a tough one but I thought having the chemo isnt gonna kill me but not having it might!!So the very best of luck whatever you decide.
Lulu,You seem very similar to myself ,and made the same decision.Ive decided to have my quite long hair cut very short,in preparation for the cold cap,but if the cap doesnt work then it wont be such a shock when the fallout starts!Did you find the cap uncomfortable to wear? I cant imagine what it feels like.Im glad your not suffering too much from the chemo,hope you stay well through it all.I start mine at the end of the week I think,waiting for my appointment.
Good wishes to you all,
Hi Dib and other ladies
I found myself in the exact same conandrum: to go for chemo or not. I had a 37mm grade 1 tumor with one node affected (hence I needed second op to remove all nodes, which mercifully turned out to be clear). According to the stats, chemio would have only added 5% to my survival rate. Not a huge amount and I was seriously debating whether I should be putting myself through that particular mill in view of such a low percentage. Like yourself I wish the decision had been taken off my hands too, but no. They give YOU a choice to make you feel in control.... If only!
Anyway, after a series of long soul searching sessions and reading what other women were saying on this site (including Jane 72. Thanks Jane!)I decided to go for it. In for a penny in for a pound, so to speak. 5% is still 5%. PLUS I would have never forgiven myself if a few years down the line I found out it had spread. Ok, there is no guarantee it won't happen even with chemo but this way I can't blame myself.I will have done everything in my power to stop the b*****d cancer.
The onc described it to me as an added life insurance....
So I went for it. I just had my first EC treatment on Wed. 22nd Sept (I'll need 6, then rads, then Tamoxifen for 5 years). I must say I feel a lot better I thought I was going to feel. A bit of nausea and feeling a bit below par for the first couple of days but that's all.
Like you, Dib, I am petrified at the thought of losing my hair (but which woman isn't in truth?)so I have tried the cold cap. Won't know if it has worked until 2-3 weeks down the line. I will report back.
In the meantime I have bought scarves, went to Headstrong session recommended by my BC nurse and, like Buzz, I am taking more pain with my general appearance. People are surprised how well I look.
I have been signed off work too as I am a teacher. My students are for ever going down with all sort of bugs and diseases. Not a good idea to expose myself to unwanted infections...
So never despair!!There are loads of women in the same boat and it's a great comfort to know it!
Big hug to everyone
No I still haven't reached a decision yet 😞 I'm at oncology on thursday 30th sept to see them and have to make a decision by then as they want to start it on the friday if I go ahead,
I'm so pleased you have decided and feel better for making your decision 🙂
When do you start, ? hope all goes well for you 🙂
Thanx buzzy,you have to have something to look forward to,dont ya.
going to a local beer festival this afternoon,then home for a chinese,will enjoy it as it will be my last for a long while.
Yes you can still enjoy a drink or two. Thats if you can stomach it!
will certainly give the cap a go,hopefully with similar results to you.I feel better now ive made a definate decision,maybe i`ll get a good nights sleep at last,if the old man dont snore too much!!
I had a really good result with the cold cap - not the paxman though, the one that looks like a neoprene cycling helmet. It wasn't nice, but I lost very little hair until one cycle when they messed the timings up and it wasn't on for long enough. But even so, just got a couple thinning areas - never needed to wear a wig or hat. I did have my hair cut very short in preparation though, so contact with the skull was good.
I'm glad you have decided to go with the chemo - there's never a right answer, but this way whatever happens you'll know you did everything you could. Good luck.
thankyou all so much for your input.i will certainly look on the websites mentioned for hats etc.
Jane,im so sorry your `C` has returned,with the info you had it was probably a decision we all would have made.Who knows why it returns for some and not others.good luck and my best wishes to you all.
Any answers yet on wether you can still enjoy a G&T or a glass of wine????Im not an alki but it is one of the pleasures that i enjoy!!!!
Ali,I never thought about getting a cold head at night,I will have to have a nightcap of a different variety!!