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Anyone else Borderline for Chemo?

23 REPLIES 23
CheshireCheese
Member

Re: Anyone else Borderline for Chemo?

You are now entitled to have an Oncotype DX test on the NHS, which is the test that some of the earlier posters on this thread mentioned. NICE have been reviewing this test for some time, and have recently (September 2013) announced that they have approved it. This test indicates whether you will benefit from chemo or not, so I suggest that you ask your oncologist for this test. Here is the link to the NICE announcement on the subject: http://www.nice.org.uk/newsroom/pressreleases/NICERecommendsTestBreastCancerTreatmentDecisions.jsp

 

Another point worth knowing is that the NICE guidelines do not allow your oncologist to offer you the option of Tamoxifen + Zoladex up front, so you don't get to hear about it until you have been offered and turned down chemo. In my opinion this stinks, since you are being asked to decide without being given full information. My oncologist told me (after I had said no to chemo) that Tam + Zol gives similar protection to some of the more old-fashioned chemo types, not quite as high as the latest ones.

mrey300
Member

Re: Anyone else Borderline for Chemo?

After reading your posts I'd like to share my treatment experience at Marsden.

 

DX Nov. 2012 ILC Grade2, 7cm ER+, HER-

 

Been on Zoladex+Tamoxifen for many months, now the tumor size shrunk to - multyfocal fragmented 5cm.

 

Ki67 initially 11% now gone down to 3%. Despite this my oncologist at Chelsea site suggested to go ahead with neoadjuvant 4EC + 4Taxol chemo which should start later this week. 

I thought that i like you would not benefit from chemo however they want me to try it before my surgery. 

 

Where at Marsden did you have your treatment, what team?

Now I have to decide for or against chemo. 

 

Please write  your thoughts if you can before I start chemo.

Rachel_0203300
Member

Re: Anyone else Borderline for Chemo?

Hi VAB, Many thanks for your very informative post. We do seem to be in a very similar situation and it is interesting to hear of the advice/guidance you received. My physical recovery was also very speedy and I had clear margins at the first attempt. I did mention the Oncoscore to the Registrar. He said might help me make a decision and thought it would cost £3/400 but in fact I thought I had read it would cost £2500. I know that cancer is a very unpredictable condition but even so it is surprising how differently we are all treated in one way or another.
I have found the experience and knowledge of others in my situation very supportive so, at the risk or boring everybody, I will post my eventual decision and how it was reached when I get that far!
With very best wishes, Rachel
Guest user
Not applicable

Re: Anyone else Borderline for Chemo?

Hi
I have not previously posted on the forums but saw Rachael's post and her experience is so similar to mine I thought she may be interested in what my oncologist has decided.
I am 57 (just!!) and found a small lump on New Years Eve. GP and initial hospital visits all suspected a cyst but turned out after core biopsy to be cancer. Had WLE and SNB end February with clear margins, recovered exceptionally quickly, that is physically. Diagnosis following full pathology report was 1.3cm lump, no node or vascular involvement seen, Stage 1 but Grade 3.
I met with the Consultant on Tuesday this week, he is from Clatterbridge Cancer Centre which is a specialist centre and he is the senior oncologist there. He felt that 15 radiotherapy sessions plus 3 booster ones and Anastrozole for 5 years would be the best treatment for me. He believed chemotherapy would be 'overtreatment' and all things weighed up this would be the very best way forward. We asked about the Oncoscore as we were prepared to pay for this privately but he again did not think it would be helpful in my case.
I have confidence in his decision and have seen my GP who is exceptionally supportive and interested and she was not at all surprised at the treatment plan.
I was prepared to have chemotherapy if it was deemed necessary and my team were fully aware of this, I am reasonably fit and active with no other health concerns.
I now have my radiotherapy planning day on Wednesday next week so onwards and upwards.
Hope this was of some help and interest to Rachael and anyone else in a simolar position.
Good luck and my very best wishes to all who find themselves faced with BC and everything it throws at them!!
chascat
Member

Re: Anyone else Borderline for Chemo?

Hi Rachel, at my hospital (and a lot of them I think) the benefit has to be over 3%, I was only 2% but still wanted it. I hope you get on better with your oncologist x

Rachel_0203300
Member

Re: Anyone else Borderline for Chemo?

Hi Kate
I think it is the Grade 3 that has put me into the borderline situation. If it had spread at all or been over 2 cm I think I would have been over the 5% "barrier". Also, I think age is relevant. The younger you are the more likely they are to want you to have Chemo. However, I am not sure that our situations are comparable as yours sounds a lot more complicated than mine. Hopefully someone else will have more relevant experience. At 53 I acually felt quite young when I sat in the Oncology waiting room this morning! Enjoy your dinner!
Spikey
Member

Re: Anyone else Borderline for Chemo?

I am one week post mx and expandable implant and have seen the consultant today for results.....all cancer cellover moved but due to complexit I think borderline would describe my situation. 3 independant tumours in one breast, 1 grade 1 1.5mm, 2 grade 2 about 15mm wach, one of which had just started changing to grade 3 in the centre.....no lymph nodes affected so now they are going to do more testing as they think they aren't all gong to be er+ as first thought the 2 they knew about were but now they want to double check. Chemo came back into the conversation as a belts and braces prevention treatment. Having read this thread I understand a little more about this but I was hoping to avoid chemo/radio by having the mx.......does anyone have any history like this?
By the way being one week poat mx I thnk the surgeon was surprised at how well I was......in fact they removed dressings and said to do whatever my body allows without straining the muscule holding the implant in place out for dinner tonight to celebrate!
Kate
Rachel_0203300
Member

Re: Anyone else Borderline for Chemo?

I had my Oncology appointment today. The Consultant was on leave so I saw the Registrar who seemed a bit nervous! Using Adjuvant Online my percentage chance of living for 10 years or more increases by 4%. If I have no additional therapy my chance of living more than 10 years is 84%. Hormone therapy will add on 4% and Chemotherapy another 4%, giving me a total of 92%. So I am 1% off the 5% border. The Registrar said he would not do Chemo, but that he did not look after himself anyway! I asked about Ki 67 and he said that test had not been done but that he would order it. However he did say my tumour was a Luminal A which (having come back home and looked it up on the internet) seems to mean that the Ki 67 would be low and the prognosis on hormone tablets alone would be very good. Still undecided but hoping that the Consultant will give firmer guidance when I go back next week or the week after. More waiting! Like all of you, I just wish I could move on from this. However, mustn't grumble, I know that I am lucky to be in this dilemma. Best wishes to all - hope you have a good Easter despite all you are going through.
Rachel_0203300
Member

Re: Anyone else Borderline for Chemo?

Thank you to everyone who has responded to my borderlne for chemo thread. It has been so helpful hearing how you all reached your various decisions and reassuring to hear that chemo (if that is the route for me) may not be so bad. I will be seeing the oncologist on Thursday and feel I now know what I should be asking her. I will let you know how it goes but I do feel, having heard from all of you, that taking into account my age (over 50), being reasonably post menopausal, tumour size beinn less that 2 cm, ER+ and no nodes affected I may well be at the lower end of borderline, so what ever decision I take I know I have been very lucky.
BFN and I wish you all good luck with your treatment.
Rx
Lozzarooney1
Member

Re: Anyone else Borderline for Chemo?

I was borderline for chemo grade 2 no nodes affected strongly ER+ Her- 2.1cm. The tool they use is NPI and a score of 3 and upwards would mean chemo. As I scored 2 it was decided I wouldn't benefit from it (my onc said they don't offer it if you score under 3).
I had WLE/SNB, am currently undergoing rads (completed 10/15) and have started Tamoxifen. I am 51.
Buffycat
Member

Re: Anyone else Borderline for Chemo?

My case was very similar to JCJ, except the reasons for the oncologist for wanting to give me chemo was that at 51 I was pre-menopausal, and I had 1 positive lymph node, even though the tumour was small (11mm), and grade 2. Chemo would have given me an apparent extra 2.7% survival rate.

I asked if they could test the tumour for Ki-67 which tests the proliferation rate of the cancer cells. I first heard about it on this site. Over 20% and the advice would be to use chemo. Mine came out at 8%, so the oncologist then offered me monthly zolodex injections for 2 years. It would seem that zolodex isn't offered as an alternative treatment plan unless the woman turns down chemo. So the treatment for me is radiotherapy, zolodex, tamoxifen for five years, with Letrozole for a further 2 years.
The Marsden recently told me that the treatment plan was the most appropriate for me and it would be very unlikely that I would be back there with secondaries in the years to come. Obviously, there are no guarantees, but there isn't with chemo either. I think the choice would be to weigh up the benefits of chemo against the long-term side effects.
I am comfortable with my treatment decision, and should it ever come back, I won't regret not having chemo.
Incidently, the breast cancer PREDICT tool on the NHS website now includes the Ki-67 test, so it would seem it is becoming more widely used.
Good luck in your choice of treatment, and I wish you all the very best. xx

samos
Member

Re: Anyone else Borderline for Chemo?

I also found chemo to be ok - I've grown to hate the phrase 'doable' lol!
Grade 3 is aggressive, hence the offer of chemo. I know we are all different, but even if chemo only decreased my risk by .5% I'd have taken it!
For me it gives me the peace of mind in knowing that I did everything I possibly could to kill off the Cancer. Obviously there are never any guarantees, but should my cancer return, then I can honestly say I have done everything possible to stop it!
I'm also sure that your family would welcom you having the fullest treatment possible - at the end of the day it's one summer...

chascat
Member

Re: Anyone else Borderline for Chemo?

I should add, as some of the other ladies on this thread have, chemo for me was very tolerable, I worked right through, albeit at home, I had a break away to the coast at one point and even went for a weekend in London to the Olympics, not everyone has a bad time x

JCJ
Member

Re: Anyone else Borderline for Chemo?

I was borderline for chemo. It was the grade 3 and over 2cm that triggered the option for chemo. Er+ve and no node or margins meant I wouldn't need chemo, so I was exactly borderline. My onc went through the statistics (remember they ARE only numbers and you don't know how many of the poeple who had chemo and their cancer didn't come back would have had the same result without chemo. Also, these statistics are based, obviously on people diagnosed 10 years ago and treatments have moved on a lot since then!)

I had a terrible week trying to decide whether I wanted to put my life on hold for a further 6 months for a potential 5% increase in survival. I posted on here for advise. Here is the thread:
http://www.breastcancercare.org.uk/community/forums/trying-decide-whether-have-chemo

In the end, because my cancer was hormone +ve, so I had hormone therapies to fight any stray cells, and I had clear margins and nodes, I decided to say "No Thanks" to chemo. As soon as I did, my onc said "Yes, It probably would have been overkill in your case" and offered me Zoladex implants to induce menopause and reduce oestrogen production (I was 51 and pre-menopausal)

A year on and I don't regret my decision at all - although I'd be a liar if I didn't admit to occasional "what if" wobbles, but I just remind myself that if the I get a reoccurance, it could have come back anyway, even after chemo, as chemo is no guarantee.

If you are left to decide, get all the facts you can for YOUR situation and make a decision that YOU can live with. Nobody else can do that for you. Then try to forget the decision was ever yours to make! Most people are either TOLD they're having it or it's not even mentioned.


Good Luck. xx
Jayne_m
Member

Re: Anyone else Borderline for Chemo?

I was also borderline for Chemo - grade 2, 2.5cm IDC no nodes, no spread ER+ Her -. For me it was a no brainer, I was not prepared to have any regrets in the future and wanted to know that I had done all I could to improve my chances so with the full support of my family opted for chemo. I had 6 FEC and finished in January, it was not fun but it was doable. I worked throughout, mostly from home but did go into the office in the third week of each cycle. I was low for a few days each cycle and over time my energy dipped but I still managed to do most things, including a 3 day hotel break for New Year and even managed to stay up dancing until 1am after 5 rounds of chemo. The side effects are different for everyone and I know I was lucky in that I didn't suffer too badly but there are plenty of drugs available to manage the side effects if you do get them. I also used the cold cap so didn't lose my hair.

If you do decide to go the chemo route, I recommend you join the relevant thread for the month your start as you will get a lot of support and tips from people going through the same thing. You may want to have a look at our October thread, we have laughed and cried our way through but we are all now coming out the other side and the recent chat has been more about holidays than side effects! The time has gone really quickly and I am glad I made the decision I did and, if god forbid I am faced with the same question in future, I would make exactly the same decision again.

It is very much a personal choice and I wish you well whatever you decide.

Jayne x
chascat
Member

Re: Anyone else Borderline for Chemo?

Poemsgalore, how are you joints going through chemo? I have RA too and was taken off methotrexate whilst undergoing treatment, my joints were the best they'd been in years - they're pretty pants again now though 😞

poemsgalore
Member

Re: Anyone else Borderline for Chemo?

I'm speaking as someone who was NOT borderline, but I only had one lymph node affected, but tumour was 3cm and grade 3. My oncologist did leave the decision up to me though, as I have so many other health problems, one of them is worse than cancer, but for me it was a no brainer. I've just had Fec 3, and moving on to Tax next time. I've had very few problems in spite of RA, Bronchiectasis with psudomonas colonies in my lungs, sjogren's syndrome etc.etc.etc. Don't yet know how I will do on Tax, but I feel it is right for me to do this. The decision is yours of course, but I fear those blasts of radiotherapy more than the chemo. Good luck in your decision and whatever treatment you have.

Poemsgalore xx
rosebud50
Member

Re: Anyone else Borderline for Chemo?

Hi

i was borderline and had chemo. Based on my age, I wanted to do everything to ensure it never came back. It was a year of big family events and i did manage to attend most. There will always be future events to catch up.

your oncologist will discuss benefits against long term small side effects. Age, weight, smoking history come into it.

best wishes
Mindy63
Member

Re: Anyone else Borderline for Chemo?

Although chemo isn't great fun. It's not all black days and it is possible to attend family gatherings etc. on your good days.
I was dead against chemo but in the long run at least I feel, if it comes back, I'll have thrown everything at it.

chascat
Member

Re: Anyone else Borderline for Chemo?

Hi Rachel, I replied to your post earlier but it seems to have disappeared. I too was borderline for chemo but mine was only a grade 2 19MM, strongly Er+, I personally wouldn't even consider not having chemo for a grade 3, I met a lady in the chemo ward who was having chemo for a tiny 2mm tumour but as it was grade 3 the oncologist insisted on it as it's the most aggressive. I know you say you've got a lot on this summer but my take on it was that I wanted to ensure I was around for many summers and I never wanted to regret not having it. Chemo is there to mop up any stray cells that could be floating around, I wouldn't take the risk not to myself, I actually welcomed chemo as I knew I'd done everything I could to get rid of cancer once and for all, the rest is in the lap of the gods.
Any questions please ask.

Love Lydia x

Rachel_0203300
Member

Re: Anyone else Borderline for Chemo?

Thanks for the tip about bumping myself - I have to say I do find this site quite hard to negotiate at times.
Mazg thanks also for your comment - I think if the Oncologist gives a firm recommendation that will help, to be honest!
Mazg
Member

Re: Anyone else Borderline for Chemo?

I was also borderline but in the end they recommended chemo as well as radiotherapy, and I felt more reassured at this decision even though it has been horrible! I'd had a lumpectomy at the start with no nodes involved.
Guest user
Not applicable

Re: Anyone else Borderline for Chemo?

Unless someone replies you just slip out of sight with posts - so new posts don't gain a foothold. I can't help you on the question you asked as i just had radiotherapy and wasn't ever for chemo but I'm sure others will be here to help. A tip.. when you post a new thread if you 'answer' yourself by bumping the post it gets onto the main 'board'. All a bit frustrating. I think they are working on improvements.
Rachel_0203300
Member

Anyone else Borderline for Chemo?

I posted on this site about 1 month ago when I was first diagnosed and want to thank everybody for their very supportive replies. Since then I have not managed to get a post on the site and I am not sure what I have been doing wrong. This is my second attempt this afternoon!
I have had a WLE and SNB. No nodes affected and the cancer has not spread. The tumour was 1.6 cm and Grade 3, Oestrogen positive and HER-2 negative. I thought as no nodes are affected and there is no evidence of lympho vascular spread the treatment would be Radiotherapy and Hormone tablets. However, I have been told that I am "Borderline for Chemo". The Onocologist wants to discuss this with me and I have an appointment next week.
I am sure others are/have been in this position and I wondered whether the Oncologist will give clear guidance or just leave the decision up to me. If so, it will be very difficult to know what to do. My very supportive family has an awful lot going on this Summer and it would be great for everyone if I could have my blasts of Radiotherapy and then be back to normal. However ..... I do want to be around for many years to come". Has anyone else been through this decision making process, please?