Diagnosed in the New Year, two weeks ago I had a 3.8cm grade 2 cancer tumour removed from my breast with clear margins achieved, but the cancer proved to be bigger than first diagnosed and higher grade, plus whilst the two nodes sampled were clear, I have got ‘widespread lymphovascular invasion’ LVI). Reconstructive surgery will be in a week’s time, then the question is whether to have chemo as well as radiology.
Onco is supportive of chemo due to size and LVI, but it’s my choice and there is also the possibility of doing a new test which has been available for sometime in the States which will help identify liklihood of reoccurance/chemo receptiveness - but it is not on the NHS and expensive, plus reading US blogs seems to suggest that unless your score (out of 100) is very very low, they go for chemo anyway!
a) does anyone know about the Oncologytype DX test?
b) what have others with a similar experiences decided to do about chemo? I’m 55.
Would really appreciate some feedback on both points.
Thanks
Anne
Hi Anne - I’ve no direct experience of this, having been given no choice myself - but my instinct would be that rads are targeted where the lump was, but chemo affects the whole body.
As you had signs of invasion there is no telling where the dodgy cells might be now - so in your shoes I’d take the chemo. But that’s just my gut feeling.
Best of luck, whatever you decide.
Peg
Hi Anne
I can’t help you re the test you mentioned, but I had to make that decision too, as I had cancer cells in lymphs. I have several health problems which on the surface of it, would put some people off having chemo. Even OH wasn’t keen on me having it. But nobody was anti-radiotherapy, which can do me just as much - if not more - harm. Weighing up the pros and cons, I decided to go for it on the understanding that I could stop at any time. In fact, chemo nurse said anyone could stop at any time. I tend to agree with Pegglass, there is no telling where there are dodgy cells, especially as you have lymphovascular invasion. I’d be inclined to go for the chemo myself, but only you can make that decision. Good luck, whichever way you go.
Poemsgalore xx
Hi I posted a similar thing last year:
http://www.breastcancercare.org.uk/community/forums/trying-decide-whether-have-chemo
We are all different and you need to make the decision YOU can live with, but if it helps at all, I declined chemo as for me, personally, 5% improvement on 80% didn’t seem enough gain for the extra 18 weeks of treatment. As soon as I said “No thanks” my onc agreed it was probably ‘overkill’ and offered me zoladex to stop oestrogen production (ER+VE cancer) which gave me back 3% increase in survival (but that’s only numbers based on last 10yrs and treatments are improving all the time!)
When I was struggling to make the decision (the worst week of my life, so far - I exaggerate not!) I was comforted by the fact that if my team really thought the benefits of chemo outweighed the risks (and vice versa!) they wouldn’t have given me the choice. My BCN, when I rang her for advice, said MOST people are either TOLD they’re having it, or it’s not mentioned at all!
I wish you luck with your decision. It’s time to be selfish and do what YOU are comfortable with. You will come to a decision eventually and the relief will be immense.
Cyber hand-holding/hugs. DM me if you want. JCJ
PS my onc used this website with me to show me the statistics with and without chemo : maybe not as accurate as the test you’ve been offered, but it’s free. Use with caution.
It is a very personal decision, and only you can make it.
With the vascular invasion it would be a no-brainer for me. Some of those cancer cells are in your blood stream and goodness knows where they may end up. Chemo is designed to kill off the stray cells in your entire body to try to stop secondaries emerging. Radiotherapy just targets the area where the tumour was to try to prevent a recurrence in the breast.
You don’t say if your cancer is HER2 positive or Hormone positive, and both these could make a difference to your decision.
I have heard of the test you mention. Is it available in the UK privately?
Whatever you decide, I wish you luck and am sending you cyber hugs xxxx
Hi Anne
I am 52 and had 2.5cm tumour, clear margins, no nodes involved and no mention of LVI so assume not that either. I was offered the choice of having chemo as the tumour was 2.5 cm - for 2 cm they wouldnt have offered it. It was grade 2 stage 2 ER+
I decided to have the chemo as I absolutely did not want to regret my decision in the future. My onc said that there was a 97% chance i didn’t need it but I wasn’t prepared to risk being one of the 3% that did. I asked about the Oncotype test and my onc said the the reearch was not conclusive therefore he didn’t recommend it for me.
I have now finished chemo (6 weeks ago) and am about to have my last week of rads. Chemo was no picnic but it was doable and I have no regrets and given the same choice again, I would make the same decision.
It is a very personal decision and good luck with whatever you ultimately decide is right for you.
Jayne x
When I was recommended chemo they said as I was scoring 7/10 for not getting cancer again,no one gets 10/10 and if I have course chemo it would get me up to 8/10,to me I would rather endure the course and be an 8/10.Obviously for another person who may rate 4/10 and by having course would get them up to 7/10,they would see a much higher benefit.I think best to treat the whole body and have no regrets.
All the best to you
Love Chris xx
Dear Anne,
Hi. Sorry to hear that you need to make this difficult decision. I was marginal for chemo and my Onc gave me the choice even though I felt very ill-informed to make such a massive decision. I was told I could pay for an Oncotype test and this would give me more information but from the research my OH and I did we felt that the Oncotype test had not yet been used for pre-menopausal, node positive women (like me). This was in May of last year so there may be more studies and data available if you want to research it yourself.
The thing that I did that helped me the most was to contact BCC who arranged for me to speak to 2 women on the 'phone about their decisions about chemo: 1 had decided to have chemo, 1 had decided not to. BCC set up the calls within 24 hours of me contacting them, the 2 ladies I spoke to were really lovely, told me their story and how they feel about chemo now (8+ years on) and in no way tried to influence me. It was just so helpful to speak to 2 people who understood exactly what I was feeling.
If you are like me and you want research the Oncotype, chemo etc ask your Onc for some studies to look at or make sure you stick to proper academic/medical journals and quality websites such as BCC, Macmillan, CRUK.
In the end I decided to have chemo even though the thought of it scared me silly. I took my age (49), the details of my cancer and also my tendency to worry into account - I did not want to spend the rest of my life worrying. All the best, Helen
Dear Anne
The service which HJU63 mentions is our one to one support service. Here is the link for more information about it:
Hope this helps
Very best wishes
Janet
BCC Moderator
Dear Anne
I am in a similar position to you. 2.8mm tumour and negative nodes but vascular invasion positive (58) and I have to choose whether to have chemo. I have decided to go for the Onco DX test as I want as much information as possible to make the right choice. My Onco said he expected the test to be available on the N H S eventually but not in time for me so we will be paying. Hope you make the right choice, good luck.
I have just looked at the Oncotype DX test website and it seems not everyone is eligible for the test even if they paid for it.
The list of eligible tumour types is here - oncotypedx.com/en-US/Breast/PatientsCaregiversInvasive/TestRightForMe/Eligible
Hi Anne and all. Wow! just been reading the messages and find myself in exaclty the same position. Today I met with my surgical consultation and breast care nurse. From being told that my lymph nodes were clear to then being told that I will have to decide on Chemo or not has left me very confused. My grade 2 tumour was 7cm - double the size expected from the scan etc before hand, so I suspect that is one reason to consider chemo. I feel fit and healthy, recovering really well from my mastectomy and am dreading the idea of feeling ill that comes with the chemo. I suppose I just want to get my life back asap. Am meeting with the oncology specialist on thursday. To be honest I thought chemo was only something that was offered if there were signs that the cancer had spread. I also think I would prefer someone to tell me I need to have it, rather than have to make that decision for myself. I have found the different comments useful. Some of my biggest worries are on how it will impact on my kids who are aged 8 and 13, and it increasing my time off work, including the financial side. Good look with your decision Anne, I know it’s a hard one with so much to weigh up and take in.
Hi Mrs B
Welcome to the Breast Cancer Care discussion forums, I’m sorry to read of your recent diaganosis. You might find it helpful to give the BCC helpline a call and talk things through with a member of staff. Here you can share your feelings and concerns with someone who will offer you a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
Hi Anne and Mrs B
i had to decide on chemo, my onc told me I was borderline with a small benefit from chemo, for me it was a no brainer from the outset. I had a small (19 mm) grade 2 tumour, strongly ER+ but I had a 4 year old daughter, the only thing I cared about was being around for her for as long as I could, if this meant hair loss and 4 months of misery in exchange for ensuring any stray cells had been destroyed then no way was I going to say no. I found chemo very doable, not saying it was easy, far from it but I coped with it well and worked for 5 out of 6 of them, all the time caring for a very demanding 4 year old. Yes there were days, quite a few when I didn’t want to get out of bed and I’ve lost count of the number of times I cried, but I’m now very proud of myself for being brave enough to say yes, bring it on. I finished chemo in July 2012 and now have a decent covering of hair, life is slowly returning to normal. Personally with LVI or a large tumour I wouldn’t dare say no, but it’s a very personal decision and not one that I needed to think about, I just knew which way to go.
Take care
Lydia x
Hi Ann and all Just to update…Saw the oncology team today and when I pushed them to explain in terms of risks and benefits as to why I needed chemo, they pulled out a bar chart showing analysis of my 10 year survival based on having no further treatment all the way to having the works. The results were based on averages for women my age with my size of tumour etc. This I found really useful and as I said to the oncologists gives me a reason to put up with the potential sickness and side effects.
So chemo it is then. However my dilemma is not yet over as I have to decide between two different courses of chemo treatment! Apparantly I fall into two different categories. So do I opt for the EC course of treatment or upgrade to Taxotere which apparently has increased side affects and my oncologist basically said even with a cold cap I would have hair loss.
Again can’t believe I am being left to decide. The Taxotere is a stronger chemo and so gives me better odds, but only by 3 or 4 %. I certainly dont want to be regretting my decision in a few years time do I? I really dont like being the one where the buck stops I suppose.
Trust me - the fear of chemo is worse than the reality. It is doable and if you should find yourself feeling worse than you think is acceptable then please tell your oncologist as there is always some thing that you can take to alleviate the side effects. Do look around your chemo unit before you start and you will see that nobody is strapped to their chair, kicking and screaming!!! Hair DOES grow back, and the day will return when you will bemoan the fact that you have to shave your legs so often!!!
I had a mx, 6 chemos (3 FEC and 3 docetaxel), 15 rads and 18 herceptins after I found my 'lump almost 2 years ago. My last herceptin was in September 2012 amd very soon I will have my 2nd mammogram since my diagnosis. I can’t believe how quickly the time has passed. Just take each chemo as it comes - 1 being the 1st and you are off, 2nd being 1/3 of the way through, 3rd being the half-way mark, 4th is 2/3 of the way through, 5th is the penultimate and then number 6 will be your last one.
I took all the treatment that was offered to me and I will never be in a position to wonder if I should have taken it all whatever the outcome.
Good luck, with whatever decision you come to
Mazzalou xxx
Hiya, I had FEC -T and when I discussed this with my Chemo Nurse that I was scared to have the Taxotere because of the side affects she said " Tracy if you was in India you would be crying out for this drug, please take it as you will be having the gold star treatment ". So with that clearly imprinted on my brain I had 3 FEC , then 3 Taxotere . It was okay and I never lost much of my hair as I did the Cold cap treatment. I would go for the Rolls Royce policy if you can and not the bog standard car insurance !! Give yourself the best possible chance then you will have no regrets. I was a borderline case for rads after my Chemo but after much research and soul searching I decided not to have it. This of course was a very personal decision as I was worried about my ribs cracking as they are already pushed forward from a Scolosis, curvature of the spine.
Good Luck with your decision. Once you have made your mind up, stick with it and be content , dont ley anybody make you change your mind, it is your body !! Love , hugs and positive vibes. Tracy xxx
Thanks ladies for sharing your thoughts/experiences. Having slept on it the realisation of the end goal has made me decide to go for the ‘Rolls Royce’ option (loved that tracyld!) . I need to give myself the best chance and even if it’s 3-4% difference, I’ll take it. Am going to see my hairdresser friend about cutting my hair short before I start. My hair is thick and shoulder length so hope it would feel so bad if it thins when shorter.
Hope you have been able to decide what’s best for you Anne,