Confused, do I need chemo/rads

Hi All,
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.

Essie x

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.

Angie

Hi Essie,

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!!

Best wishes,

Ann x

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.

Hi there

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.

Best wishes
Lucy

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?

Hi Essie

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.

Jo xx

Hi everyone,

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.

HELP!!!

Essie x

hi Essie
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
Anna x

Hi All,
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!

Essie xx

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.

Anne

Essie!

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
Hayley x

Hi,
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.
Lily

Hi Lilly200,

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.

Hayley;
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.

Essie xx

Hi Essie,
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.
Good luck
Lily x

Lily200

Which area do you live in? I live in staffordshire.

Essie x

Hi Essie,
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
Lily x

Hi Essie,

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,

Sally xx

Hi Essie

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.

Ruth

Hi Essie
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

best wishes

Liz