I was in the same position as you and decided not to have chemo after asking the question "if I had chemo will it keep the cancer from returning" and the Onc said "No". So, I said I wouldn't be having it then and just have rads and tamoxifen, which I started 2 weeks ago. I don't regret the decision at all, and I know that if it does recurr then it could have whether I had chemo or not. Chemo would have made a difference of 2%, as I have 98% with my prognosis and rads and Tamoxifen.
Mine was a 17mm tumour, hormone +tive and grade 2, so only a couple of mm bigger than first thought. They removed 2 nodes which were both clear. They removed 5 mm margin around the tumour and only 1mm was cancerous in one top corner which they aren't worried about as they will zap with rads. This was also inside the margin, as I had clear margins.
The Onc didn't try and pursuade me at all, he was happy with the decision I made, so was OH.
Hope this helps and good luck with your decision.
I have not been sick thank goodness, mints are a good idea, my mouth tastes awful. I feel very sick, it is just like a bad hangover (but without the headache thank goodness). Got a redhead wig free on the NHS, going to have my hair cut next weekend. I saw a woman at a BCC forum who looked lovely with no hair, she had eye liner, eyeshadow, mascara etc on, I will have to practise.
I keep thinking "if I feel this bad it must be poisoning the cancer" and at leas I've managed to get up, dressed and had a bath today, my daughter is back from her Dad's at 5, can't wait to see her.
The sickness tablets were prescribed by the hospital so I think they may be standard starter ones. I had terrible morning sickness too with my son. I have been drinking flat coke and got a load of extra soft mints to help.
Yes I will loose my hair, already had it cut from shoulder length to posh spice style. The hospital have ordered some wigs for me to try and have said if I don't like them I can order till I get one I like. Ebay stores have some really nice looking wigs so i may try them too. Have many occasions coming up so I want to get a good look. I have been told to make a lot of your eye make-up to detract from lack of hair. Speak soon and be positive, we can do it!
Go to go and fetch kids from school.
Thanks for replying so quickly, which anti sickness tablets did you have? I had horrendous morning sickness when pregnant (and during my many hangovers!) but don't get travel sick. Are you going to lose your hair? I definitely will and am ordering scarves etc from the Net,
Had my first chemo on wed, not as bad as I expected. Ok till midnight then really sick up till 12 the next day as could'nt keep the first lot of anti sickness tablets down but got the next ones down and started to feel better, had tea as normal just feeling a little tired but resting as i need. Hubby is being brill.
You do hear horror stories about it but I found the best way to describe it is a combination of morning sickness and a really bad hang over. They are doing my chemo at home for the next ones all being well so i won't have to travel and can get straight to bed. Hope you find it like me and dont forget just after new year it will all be over with.
Keep in touch.
How was your first chemo? I have made the same decision as you and am starting chemo (FEC) on 2nd October.Irina xx
Have decided to go for the chemo after a chat with a wonderful lady from the peer support. I can then say I gave it my best shot if anything does happen. Got 2 kids to think of. Will be starting chemo middle of sept, So thanks all for your advice. Speak again soon.
Just wondered what you'd decided to do in the end, are you having the chemo? I'm having that Oncotype DX test to help me decide. If anyone else out there has had it I'd be keen to hear about your experience.
it depends what drugs you have, some thin hair, others like epirubicin usually take all your hair so you won't need to defuzz legs or armpits! You can always have the cold cap to try to save your hair if you are willing to spend a little more time in the chemo unit. When you know what you are having look into the threads on hair a bit more. Like everything to do with BC, you get used to it. I have had the cold cap 4 times and have some hair but very thin especially on top, but I had thin hair to start with. I have wigs, caps, hats, scarves, everything you can think of ready but have managed to just wear a wide stretchy hairband so far
Good luck to all of you with your decisions
Thanks Lily and Jilly,
These are my thoughts also, I want to have all angles covered and all the whizzy and zappy things I can get.
How long does it take for hair to grow back? half an inch a month?
Oh that I had the face of Sinead O'Connor!
For what it's worth, I had a small primary bc about 16 years ago, and then another primary in the same breast this year - just over 4cm, no positive nodes, estrogen positive. I was offered chemo for an extra 5% survival, and decided against, mainly because I've been following friends I made during my first round with bc, some of whom have ongoing problems with after-effects of chemo. (I'm 59 now, and I don't have the worry of surviving for childrent)
I wasn't particularly worried about the chemo itself, it's nasty but do-able, but for me, the extra benefit wasn't enough to outweigh the possible ongoing effects. But it's always difficult making the decision, and sometimes, we wish the medics would just go back to the old days when they told you what you were going to do.
I do agree that asking them what they would advise for their sister/mum/daughter - whichever is around your age is often helpful and they will often discuss that more fully.
My only advice is, whatever you decide, don't keep revisiting it, sadly, we can't ever second guess if we made the right decision.
Hello all, good to be able to speak at this time of night, although I'm sure you're all fast asleep now. I am a nurse, but would still have preferred the docs to tell me what to have, ie. mastectomy or WLE. In the event I have had 2 excisions and four lymph nodes gone. I have decided to go for the lot, 6 cycles of chemo and rads, then hormone treatment.
Cassie, I too have got a thick head of dark hair. Losing it is almost scarier than the treatment. SO I have bought myself some lovely hats from Accessorize, to wear over a cheap wig that I will get on the NHS and have even bought some false eyelashes from a website called Classy Lashes
Lily I agree withyou about thinking of the stuff whizzing round and zapping stuff!
Love and best wishes to all Jilly xxx
I would say have everything you can and get your % as high as you can. Sadly someone has to be those unlucky percentages left over in all these statistics. My personal decision was to have everything. I am half way through chemo and have had bad days, but these are days not constant and I have not been sick. Some lucky people get no side effects at all. It is as we say do-able. If you decide to have chemo you will get tons of support on here and don't under estimate how reassuring it is to know you have something wizzing around zapping those little Cs.
Thinking of you
A breast cancer research scientist friend told me about the Onco type DX test the other day, it is becoming common place in the US. I googled it and there is a company in the UK that does it. They need to sample your original cancerous lump I think - don't know if these things are kept by the labs, I presume so. I've seen costs of $4,000 quoted as the price in the US so it is bound to be a similar price here.
Oh, I am so relieved to have found this thread! I have been crying since yesterday afternoon about this. I had a mastectomy and recon and dx to hospital discharge happened within 3 weeks so it has been such a blur. Had been told chemo would not be necessary, poss rads for 4 weeks, then yesterday saw my oncologist who ran my case through Adjuvant and it showed I think an 80-85% survival rate (difficult to predict as I had cancer in papilloma form so was dotted around and hard to measure) which would be improved by about 3% with chemo as well as tamoxifen as opposed to just tam.
I have been reading the message boards on people going through chemo and they sound positive bu the side-effects are horrific to me. I don't know how I could cope with losing my hair, I have a big mop which is such a crucial part of my appearance and that to me is the most upsetting part. When I have mentioned it to people whoc have either had it or nursed people who had, they have been utterly horrified that I may have it, in fact their reactions have been more extreme than when I told people I had cancer to begin with and needed a mastectomy, which is pretty shocking givewn my age (27).
Still need to think about it, my onc also left it up to me, I suppose because it is a hge choice and the costs/benefits are not clear-cut when you are loking at these stats and that fact it is a precaution rather than a treatment,.
Good luck Essie, I'm sure you will make the right decision for you.
I was glad to find this thread as I am in the same dilemma.
I am 36, had a 1 mm tumour (ductal) removed on 14th July, they did not get clear margins (found lobular cancer in situ underneath the tumour) so I am having a re-excision on Monday 18th (next Mon). I am 100% oestrogen and progesterone positive so will have tamoxifen for 5 years, I will also have radiotherapy as I had a WLE, my cancer is grade 1 and I've been tested for HER2 but we don't have the results yet. I had an adjuvant online printout yesterday - my BC surgeon said it's only a very rough guess and I need to consider very carefully whether to have chemo as it will give me "only" a 3.6% extra chance of survival (on top of 90% with just rads and 2.6% with tamoxifen).
Then after we left my friend who was with me said "don't have chemo, it's not worth it for 3.6%, have you ever seen anyone go through chemo?" All very well for her to say, cancer free and with a 99% chance of staying alive the next ten years like anyone else aged 36 !!!!!
I see the oncologist in about 4 weeks so will ask him more. All I can think is, how would I feel in 8 years time if I haven't had chemo and I'm one of the 3.6%?
I am so anxious and panicky about the whole thing. My instinct says have the chemo but then again I haven't seen anyone go through it and now feel if I have it I will be made to feel bad for complaining! Like I pleaded for a C-section during labour and then afterwards was told "you asked for a C-section, stop moaning about it (most unsympathetic midwife in the world award?)
although it can be worrying, you do need to also consider the standard of care you are getting. Are you attending a centre of excellence or one of the big chemotherapy units? Some ladies will not even be being treated by a team or oncologist who specialise in just breast cancer, which is not ideal. If the person making decisions about you is not specialising in just breast cancer, you might consider asking for a second opinion. Well you can do that anyway, it does cause a delay but may help you decide what to do.
Anyone in my area under 50 with or without clear nodes seems to be having chemotherapy now. I am not long for the 40s but have been told that age is the biggest concern with me.I am having chem, rads and then 5 years of tablets.
Good luck with your decisions.
Thanks Jane re web page,
I have an oncologist appointment this Friday and i feel that i will be in the difficult position of deciding wether to have chemo for an extra %. I would be willing to pay privately to have that test but it doesnt give any information about doing that and i see it was printed 2007. I presume it still in developmental stage but if you know differently i would appreciate how i could contact them,thanks,
Decision making is always hard around treatment. Some early stage er+ and pr+ cancers where no node involvement have a much lower risk of recurrence than others. There is a test, not available on the NHS, but being trialled called the oncotype dx test which tests er+ and pr+ tumours to determine the likelihood of rceurrence. Cancer Bacup has a very good page about this test:
Essie: good luck in your decision making. I think a question always worth trying is to ask onc what they would advise their own wife/mother/sister/partner. At the end of the day though we each have own attitude to risk and it is probably that which detrmines our decisions.
Bear in mind also that radiotherapy is different in side effects and purpose from chemotherapy (radiotherpay a local treatment rather than a systemic treatment.)
I was diagnosed Oct 2006 with Grade 2, 2cm ER 7/8 Invasive Ductal Cancer. At my first app, I was told that, due to my age, 43 at dx, I would get everything "thrown at it". After surgery which was WLE, I was told no nodes involved, no vascular involvement and blood tests all clear. I was then told that I didn't need chemo just Rads and Tam for 5 years. I was really concerned about this as other women with the same results, get Chemo but was reassured that I had a survival rate of 90-95%. I guess they must mean 5 year survival here.
Don't know wether this helps at all but it seems that treatment choices do differ greatly depending on where you live. I still panic that I should have been offered chemo but read in a newspaper recently that Tamoxifen alone is as good as if not better than Tam and chemo for women with my sort of cancer.
I had lumpectomy and clearance; nodes all clear (great) so no tamoxifan or herceptin. I am going for meeting with my onc next Tuesday (19th) to go over pros and cons of chemo. My consul reckoned 2 - 4% extra with chemo but the choice is mine. There is nothing else to pick up any tiny bits that might be lying arouns although he doesn't think there are any.
It's not an easy choice. All I think of is 5mths chemo as against 8 years tablets and isde effects
I'm in exactly the same position as you and really finding it very difficult to decide. I'm 39, I've got grade 2, oestrogen positive breast cancer, the lump was 15 mm and my lymph nodes were clear. I had a lumpectomy but had to go back for more tissue to be taken as they weren't expecting it to be cancerous. My oncologist said it was up to me but he thought chemo wasn't really necessary. I'm getting a second opinion on Friday. I don't have kids which is another factor - it does affect your fertility - but I'm trying to not let that sway my decision, don't want to leave a child without a mum.
I just wish someone could say 'the right thing to do is...' I wasn't expecting to have a choice, I just thought you have cancer and you're given chemo to treat it. That's it. I'm certainly going to have the rads and tamoxifen.
Very best of luck, let me know how you get on.
I was/am almost identical to you - same survival rates, no lymph node or vascular involvement, stage 2 though my tumour was 12mm. I chose not to have chemo and was told I didn't need rads either - I decided not to put myself, my kids and my partner and his kids (who had seen their mum go through chemo twice before she died) through it for the sake of a statistical 2-3% increase in survival - it didn't seem worth it. The decision, like yours, was mine - I said to my onc, are you screaming at me to have it and he said "no, not at all". He was happy with either decision. So am now on tamoxifen, obviously had to stop taking the pill, which I feel also reduces the amount of oestrogen floating around and am still happy with my decision - taken 14 months ago.
A lot of ladies here though feel that if they don't take everything going, they would feel awful if it came back - I'm quite happy to take my chances - but would you feel like I do if it came back. My theory is that I'm now monitored by the hospital every 6 months rather than nothing at all before dx - I was 38 - what age are you?
Hope this helps,
I am in Essex. Have you had a chance to read some more threads or made your decision yet? I don't know whether you believe in fate or not, but if you can struggle through financially, having you hubbie at home might really help you through this tough time, especially if you decide to have chemo.
Thinking of you
You are being so positive seeing that you have your hands full at the moment. well done for coping with so much but don't push yourself too much as it takes time to heal and you need your rest too. Easier said than done with kids around I know. I had one lump which was grade 2 and 23 mm, but no nodes involved and I am having chemo. In my area anyone under 50 gets chemo, more or less automatically as the onc feels age is a strong factor. I went today and he said again age is the main thing against you, and I am a lot older than you. He says I throw everything I can at you first go because we don't want to even get to second go, and anything that does not work first go would not work second go either. One of the ladies on here, with the same onc, said he says his results are 90% so I am just going with whatever he says. Why don't you read through some threads about whether to have chemo or not. You can put a search in to find them. After my friend getting secondaries from grade zero cancer that needed a wire to even find it, I decided my grade 2 needed a big zap and agreed to it. I don't mean to sway your decision but this is how I came to mine.
You mentioned about size and grade, the tumor they took out was 45mm and grade 2, that was what I was told by the surgeon who said they did'nt get clear margins at wle so I had the mastectomy with the result of no residual, but when I saw the oncologist she said the invasive bit was smaller and that it was surrounded by islands of pre-cancer which made it the 45mm. They gave me Tamoxifen there and then and said chemo would give another 3-5% on top of the 83-85% chance I had with taking the Tamoxifen. The Onc said she would put me on fec when I came back off my hols if I decide to have chemo.
Saw surgeon yesterday and she said that if I chose not to have chemo they could do it later if anything showed up. Really don't want to be in that ball game as I'm only 34, 35 at the end of the month with 2 kids (6&7)
Onc wanted to get a decision helping tool up on the computer called Adjuvent online but could'nt get online. Only med practitioners can get it.
Really confused as one day I think it may be best to have it and then the next day I think I shouldnt. Got to have abdominal scan tomorrow and may ask if anything looks funny this may sway the decision.
Could'nt find you on posts and hoped you'd jump in somewhere, had to have mas as no clear margin, had tissue expander implant so I still have a bit of a boob even though I can't feel it. They will change for a perm one later on. Some up days and a lot of down days especially with infection, OH redundancy and 2 bickering kids. And then to add to it I have yet another decision this one is a lot harder than the mastectomy one. There really was'nt any decision there as surgeon said no clear margins and I said it will have to come off then, and she said yes.
Got to go and break up ww3.
I am really glad that I did not have to make a decision apart from whether to join a trial or not. That was tough enough.
I thought the average odds were 85% now from reports in the paper, etc so not sure why you are 80? I think I would take further action for a possible 5 % extra security, or predicted really. This is actually one person out of 20 in a group of women. Does that sound different from 5% because numbers can be deceptive.
I would ask the oncologist what they would do if they were treating themself in the same circumstances. Another option would be to ask for a second opinion from someone at a centre of excellence or top hospital, unless you are already attending one. The family history would be investigated before treatment so you may get your heart checked out now, as a bonus. To go on epi you have to have your heart checked first.
You have not mentioned what grade of cancer or size tumour but if you feel you are happy to reveal this you will find you get a much more detailed response from people who are months/years on from where you are now.
I personally would do one of them, not sure which as no details. Unfortunately in all these statisticssomeone has to be the 15 or 17 % that it did come back for and secondary cancer is not the same.
Good luck with your decision and when it is made try not to worry yourself too much.
So glad I found you, I have been really worried about you as hadn't heard from you since your op. Sorry to hear you had to have the mastectomy and I hope your recovery is going well on that front. Bugger about your OH job, what a nightmare, as if you haven't got enough to worry about eh?
With regard to your treatment, it's a tough call. I haven't had to make any descisions at all, just told what they will be doing to me, which I suppose has been easier. Really really good news that you have no lymph glands involved (all of mine had the litttle beastie in them). All I can say is that only you can make that descision. I do agree with Anna above about asking them what they would do, or what they would advise their wives to do - worth a try I think.
You take care love
I was in a similar position to you about having to choose whether or not to have chemo. I had to have rads because I had a WLE not a mastectomy so wasn't given a choice about that. I am on Arimidex and also Herceptin as strongly HER positive. I decided to go for the chemo partly to increase my chances of survival ( a similar percentage to you) but also because to get Herceptin you have to have chemo first. I only had 4 doses of chemo as I had serious side effects (and had to take my own decision again about whether to stop or not), however I don't regret my decision to have it. In my case my daughters are grown up, but I would like to see them married and I would like to have grandchildren perhaps.
I am afraid that only you can make the decision and it is very hard. I felt that I didn't have enough information, particularly when it came to weighing up the risks of completing chemo or giving up (the side effects I had were life threatening but don't be put off as I appear to have been an extremely rare case!) I have found ringing the helpline useful in the past as the nurses are very well informed.
Good luck with your decision.
Thanks for your comments, have rang helpline today but still confused. 83-85% chance of being here in 10-15 years is not bad really, considering the world today, I could go out tomorrow and get hit by a bus ( standing joke between me and my mom as she did get hit by a bus just over a year ago) and I feel that I am a lucky one to have an 80% start rather than any lower, but it still doesnt seem enough when I hear my kids playing and even arguing. I want to be here to see all the tomorrows (as its my little girls birthday) and beyond.
They say my prognosis is good but why do I feel that the next knock on the door is going to be the grim reaper coming to get me. Everybody says don't have the chemo because of the effects it can have on the rest of your body (my family has a history of heartattacks) as having it could increase this risk so is it worth it for 3-5% or should I be gratefull for what I have.
Still hoping for some more advice. I NEED IT!
maybe your getting too hung up on the stats side of things, would you regret not having further treatment if things went wrong later on, I know its a tough call, and for alot of people rather negative but you need to way up every outcome. You will find that most oncologists only ever advise you and never just tell you what you should do, but i would ask them direct questions like "what do you think i should do? what would you do in my situation?, my consultants were all male and i asked them what they would want there wives to do? and that really helped me
Really confused still, if I have chemo it gives me a 3-5% better chance the same with rads, I am starting with 80% and added another 3-5% with the tamoxifen that I have already started. I thought that the Drs would make the decision but they have said it is up to me. I am fed up with being messed about with and I already know that I have got to have another op to put permanant implant in and sort the other side, just want this to be over but got to think of my kids. Has anybody been in the same situation that could give me some advice.
Don't know what to do for the best, and everyone I talk to says that I should just stay as I am with the tamoxifen and not put myself through more to gain 3-5%. Its easy for them to say they are not in the position.
I was told that the younger you are the more treatment they offer you as the cells grow quicker. For older ladies their cells grow slower so less chance of a quick recurrance so less agressive treatment is needed.
Hi Essie, no lymph node involvement is very encouraging.
You mention tamoxifen so presumably your bc is a hormone-positive type. If it is strongly ER+ (oestrogen positive) then tamoxifen should give good protection against any recurrence, if you decide not to have chemo or rads. You might want to ask about how you would be monitored (further checkups), I've not had a mastectomy so I don't know how this would be done.
From what you say, I think that the oncologist will be happy to accept your decision, as the percentage difference is not huge. Clearly you are finding it stressful to be told to decide... if you have a bc support nurse maybe you could talk about it with her?
Our helpliners will be happy to talk to any of you regarding treatments offered and can help you to make an informed decision when you are given options, the line is open Mon-Fri 9am-5pm and Sat 9am-2pm on 0808 800 6000.
I am a bit confused, my mum had a mastectomy same week as you. She was given all clear on nodes and clear margins, but chemo was only suggested originally if the nodes were infected. She is at the Marsden, so I do trust them totally, but she has been told she only needs rads, no other mention of life spans etc.
What a dilemma!
I suppose you could ask her what SHE would do in the same situation?
Maybe get hold of Dr Susan Love's Breast Book, which is brilliant, I'm told ( I've ordered a copy ). It may well give you the answers you need to make an informed decision.
Also, you can join in the live chat on here this evening, and speak to someone in the "know", or ring the breastcare Helpline.
Someone will be along shortly to give you some advice, I'm sure.
Your results were excellent after the surgery,so that's something to rejoice about. No lymph node involvement .....GREAT!!
It's a really tough call when you're prognosis/numbers are that good to start with which is why I think they don't just tell you to do it.
In my case chemo improved my chances by 12% so I was basically told "we want you to do blah", after all my treatments my numbers go up to 82% chance of being here in 10 years time so only slightly higher than your starting point so really you need to ask yourself how you feel about it.
Maybe have a read of the chemo and rads sections of the site to see how people are coping with treatment, that might help you decide if it's for you.
I have an incling that you're leaning towards doing the treatments as you say you have young kids and want to be there for them, maybe hubby being made redundant next week will give him more time with the kids while you undergo treatment, I don't know what you're circumstances are in that way. I really seriously worried about the financial impact as both me and partner run a business together but we're half way through chemo now and coping with it.
I'm glad I decided to do the chemo and will be doing rads too but it would be a tougher decision in your shoes as you're starting from such a good place, but that's no guarantee and maybe doing the chemo/rads will make you feel more confident that you've done everything.
Maybe you could start the chemo and stop it if you really can't cope with it?
Sorry if this doesn't help you make the decision it's not easy I know.
Really confused, had a mastectomy 14 July, had results a week later no residual cancer, no lymph node involvement and no sign of vascular.
Went to see oncologist today and she said that if I have chemo it gives me 3% -5% more to add to the 80% I have of surviving 10-15 years, or I can have rads which will give me 3%-5% as well. She put me on tamoxifen there and then and said to think about wheither I want chemo or rads or just stick to the tamoxifen. Don't know what to do, I have 2 young kids and I want to be here for them. I thought that a doctor was supposed to tell you what the best course of action is not give you the decision as I am not a doctor. I just want my life back even though it feels like it's going from bad to worse as the OH is getting made redundant next week. Can't cope with this on top of everything else.