Hi, Just to add to the confusion, I was diagnosed with Grade 3 no node involvement but not given a choice of whether or not to have Chemo or not, just whether to have it prior to surgery or after surgery. Because the tumours were large I made the decision to have chemo prior. I’m glad I didn’t have to make a decision of whether or not to have it at all though!
A no node involvement result cannot always be relied upon either. My sister, who sadly died of breast cancer with secondaries last July, was tested after her initial diagnosis and was told there was no node involvement. She had chemo too but was HER2 negative so did not have Herceptin.
Pesteringpixie, yes of course there are side-effects, but then any treatment is a trade off between cost and benefit. As you say you, you require more information about the long term benefits for those with stage 1 ER+ BC, so I have provided a link below that might help in this respect.
With regard to your final point, I doubt you are being offered this treatment just to conform to Government policy. The NHS don’t spend thousands of pounds on treatment for a patient unless they think it is necessary. Even if they are just following policy - policy is guided by medical opinion. Also, given the Govts propensity to save money, I doubt they would fund such expensive treatment if it was not absolutely necessary.
Link to study: breastcancer.org/treatment/targeted_therapies/new_research/20110301.jsp
I pretty much agree with everything Lemongrove has posted… It is our decision PP but the certainly wouldn’t be offering treatment unless it was felt to be beneficial… If you wish to refuse treatment you are entirely entitled to do that.
The issue with regards the long term effects of treatment… There may well be a risk of heart degeneration or bone loss with herceptin but there may well be an even higher risk of cancer and death with out it… But only really you can decided but do speak to your onc and weigh it up yourself.
Haya, Lulu and Lemongrove are making very good points, both ladies are very knowledgable. I had NO node involvement. BUT a CT and Bone scan the day before surgery showed a tumour in my liver and hip bone. My treatment plan was then changed to accomodate the liver tumour.
What I am trying to say is that get a CT and Bone scan first, then with more knowlegde you can make a decision… As for diet - you need to do what will make you feel good about yourself. There is nothing wrong with the Penny Brohn approach, we could all do with a bit of advice about healthy eating and how it helps different parts of our bodies, BUT don’t rely on just food alone to cure you - it just isn’t going to happen. Me? -I’m a everything in moderation kind of gal, love raw veg salads, lean meat, fresh fruit and bake all my family’s food from scratch, but also adore cadburys chocolate and wine…
As for refusing PROVEN treatment because of worry about bone density loss - ask your onc to give you Zometa or some other bone stregnthening drugs, and get your heart healthy, if it isn’t already… Good old fashioned walking everyday will stregnthen bones and exercise your heart muscle to make both stronger…
Thank for advice horsie - I have asked about CT and bone scan but they are not offered. I suggested I can pay for these privately but told there is no benefit as they can only pick up tumours not micromestasis.
Have also read about Oncotype DX but again not sure of access in UK.
Information on how to get in touch & order the Oncotype, your medical team needs to cooperate to get the tumour sample correctly prepared. oncotypedx.com/en-US/Breast/HealthcareProfessional/OrderingOncotypeDX.aspx
I am also doing 6 monthly Zometa off label to protect bones, this is done privately. You could also ask for a PET/CT to check for any early spread.
I had an ER+ grade 2 tumour with one node involvement. All margins were clear after a WLE. The oncologist had said prior to surgery that he would be surprised if I needed chemo. Hospital had started a trial on an additional test on breast tumours-think it does get used on other forms of cancer. Believe it’s a K65/75 (so many numbers to juggle that’s one that slipped past me). Got a high medium on this test-was told this was unusual given the tumour I had. Opted for the chemo as the mark had been lowered somewhat by 4 months of neo-adjuvant letrozole.
Won’t say chemo is a total breeze but -as others have said- it is do-able. And I live on my own.
So glad to see this thread still going and pleased to have Lemongrove and Lulu here. They know so much more and are able to provide a balanced approach to the question whether to have or not to have treatment. However, they do appear to be re-iterating in a more succinct way what I said before. It would not be offered (and paid for) if it was not seen as providing the best medical way forward to minimise the risk of recurrence. As I said, chemo and Herceptin doable, with so many variances of side effects, it is so individual and can’t be predicted. Take care and I am sure you will make the right informed choice for you. Best wishes to all. Jayne.
I am so encouraged by your responses - am still a newbie to BC - so far have had surgery but the rest lies ahead. It is good for me to hear from those of you who have been living with this for some time and have learned the ropes, so to speak.
Oncologist appointment at 3.30pm today - and am pretty sure that I will do the chemo and herceptin even without a CT and bone scan. A big part of this is ‘peace of mind’ - if I don’t have it, am I going to spend the rest of my life worrying if the bogey man is going to stretch his legs again.
Thank you to all those who are generous enough to help me bounce this one around.
Thinking of you. Not an easy day for you, though I am sure you will hear others say this as well ‘once the plan for treatment is known, agreed and moving forward then you feel a little bit more in control’.
Take care and keep posting - I found it really helpful even just to sneak into a few without even posting!
PP, we are all happy to help you bounce things around. Even if you’d decided not to go for it, you would not be judged but supported in YOUR decision.
Good luck, and I hope having a decision you’re comfortable with gives you a peaceful night’s sleep. Once things get going you’ll be very busy, and while it won’t be easy, you will have lots of support on here.
Herceptin seems to go on and on (I started chemo March last year and don’t finish herceptin until July this year) but the biggest nuisance about H for me is having to trot off to the hospital every 3 weeks.
CM, can you not ask your hospital to have Herceptin at home? I did the first time around, actually they strongly recommended I did. Yesterday I was told my bisphosphonate was switched to the oral version and I could resume having herceptin at home. For the NHS the cost is the same as in a hospital, with added advantage that it frees up a bed, and I save on petrol.
Pesteringpixie,
Glad to hear that you have made up your mind and feel good about.
We are all here to support you through chemo as well.
take care.
Originally posted this on “undergoing chemotherapy” but was directed here: (Although Herceptin is not an issue for me as HER-2 Negative.)
Help!! I’ve seen the oncologist today and been offered 6 months of chemo (FEC)following a WLE and SNB. The biopsy came back showing no lymph involvement. Tumour was 28mm (originally told it was ‘very small - only 11mm’)and Grade 3. ER+ Her-2 Negative.
This was a massive shock. At my biospy results appointment 2 weeks ago, surgeon told me my “cancer has gone” and he’d make an appointment for me to see oncologist about whether chemo would be necessary - (he said they were still waiting for a test result) - and plan radiotherapy.
I have been told that I will definitely need tamoxifen and that this should greatly reduce the chance of recurrence and that chemo will only reduce that risk by a further 5%. I’m thinking this is not enough benefit to be worth putting my body through 6 months of hell.
I started this process with the thought “I’ll do what I have to do, and then put it all behind me and get on with my life.” Now I’ve been told it’s my decision whether to have the chemo or not. I lost both parents, at relatively young ages (51 & 72), to heart conditions, so I can’t help thinking I’d rather not waste 6 months making myself ill for possibly very little benefit, when I could die next year of something else entirely!
Sorry to go on so long, but I’d greatly appreciate thoughts from anyone else in the same situation! Thanks.
I can empathise with your feelings of distress and shock - I have just had 8 days of it - whether to do the chemo or not. I found the ladies on here an enormous help to me.
My limited understanding is that at grade 3, you would automatically be offered chemo as the grading determines how quickly the cancer cells divide.
My oncologist explained to me that although I am stage 1, (small tumour) , grade 2 with negative nodes, there is still the chance that some cells could have gone to other parts of my body via the bloodstream. Chemo will zap them.
I was also very concerned about the ‘months of hell’ - he chuckled and said that wasn’t his original plan for me but if I want hell, he can see what he can do. He reassured me that I will be given very effective anti-nausea medication and that provided I adjust my schedule and get plenty of rest, I will be okay. My intention is to still do some work - the 3rd week of each cycle.
I didn’t want to face the future wondering if it came back and knowing I hadn’t taken every opportunity offered to me to get and stay well.
One thing that gave me a real perspective was visiting the american forums and seeing ladies who couldn’t have what I am having (chemo and herceptin) because they didn’t have enough medical insurance. It made me feel very grateful for the NHS and very humble - I am being offered all this support and treatment and excellent care for free.
If you are having Tamoxifen, it sounds like you are under 50.
I am having FEC too starting mid April - if you go ahead we could be FEC buddies.
I really do hope you can reach your decision - the limbo land is a truly horrid place to be,
Thanks pesteringpixie. Tumour over 20mm and grade 3 both mean I’m automatically OFFERED chemo but as ER+ve and HER-ve it makes it my decision rather than cut-and-dried. Herceptin not an issue for me as mine HER-2 -ve.
I’m going to be on Tamoxifen as although NOT under 50 (52 in April!)I am still pre-menopausal and that is what they go on. The tamoxifen blocks the oestrogen receptors on the cancer cells and stops them developing - so even if they have gone elsewhere in my bloodstream that should be enough?
I can’t chop and change when I work, as school needs to pay supply cover, and insurance covers this provided I’m off long term. And anyway, I’ve been told that I can’t be around the kids due to risk of infection! I know I’m very lucky to get 6 months full paid sick leave (but then up to now, I’ve NEVER had more than 5 days off sick in a row and NONE at all in last 6 years!!) If have chemo, by the end of this though, I will be on half pay.
It’s not so much the actual process of chemo: I’m sure I’d get through it, just like the operation, seroma and everything else(clexane injections freaked me out when I read about them, after all, and they weren’t so bad! :)) - it’s more the need to put this behind me as soon as possible and get ‘me’ back.
I certainly wouldn’t even consider refusing chemo if I didn’t believe that it was just ‘overkill’ - the oncologist even used that word herself!!
The more I talk about it the more unsure I become! 5 more days of this ‘limbo-land’ (love your phrase!)I’ve been there so much this year already!
hi jcj i found your post very interesting although i couldnt make out if you are refusing chemo or not. i like you are er+ and her2- i have lobular grade 3 and tumour was 9cm after my mx was done.ive had a ct scan but didnt attend bone scan as i had a melt down. what does it mean when your onc used the word overkill. would tamoxifen be enough to kill the cancer without chemo. it said on my report after chemo and rads that i would have tabs for five years. im struggling what to do.i havnt had ct results back yet but my bc nurse said its my decision if i opted for rads and hormone therapy. i would so appreciate your input on what you think thankyou so much jane xxx
My understanding is that tamoxifen doesn’t kill cancer as such - it starves it of the oestrogen it needs to grow instead. Chemo drugs actively kill stray cancer cells…
Good luck everyone with your decisions - you have to come to the ones that you personally can live with, no matter what the outcome.
thankyou djoo7 i just wish i could be positive and get on with the appoinments and do as they ask me too. wednesdays appointment is rolling round now im terrified if he says its spread. i had a speed awareness test yesterday which lasted four hours and after an hour with sitting my knees and back were aching.they dont ache unless i sit for long periods, everyone else there didnt fidget as i was.all i do is worry and i never think positive just negative all the time. my daughter was getting ready for school yesterday and her dad didnt give her clean underwear and i said she must have clean underwear everday like im saying it like i wont be here… this is how my thoughts run all the time in so many different situations if thats not negative i dont know what is. jane xxx
