Hi. I’m due to start chemotherapy soon but am considering refusing it and opting for just the radiotherapy and tamoxifen instead which I have been told will come after the chemo. My tumour was invasive BC, 2.5cm, Grade 3, HER 2, and after lumpectomy and 4 or 5 lymph nodes removed I was told that there’s no spread to lymph nodes. My concerns are 1. Here is Scotland the number of Swine Flu cases is increasing rapidly in the last few days. I’ve also just read a statement from WHO saying that they are on the brink of announcing it as a level 6 pandemic. If I take chemo then that surely would put me at a greatly increased risk from swine flu should I contract it. 2. I want to find some concrete evidence of chemo reducing the risk of recurrence in women with my type of BC, as I’m scared of the side effects. (I’m not even sure what type of chemo I will be offered yet - meet oncologist for first time tomorrow). Has anyone got any advice? Trying to make a balanced judgement, and obviously I’ll ask the onc lots of questions too. Has anyone on this site refused chemo for their own reasons?
scottiedog
Hi Scottiedog
I was dx Feb 08, aged 34, with 2.1cm, grade 3, no spread to nodes, er+, pr+, her2++.
Had wle, 20 rads, and on zoladex and tamoxifen.
My onc told me that I didnt need chemo but as her2++, if I wanted herceptin I would have to have chemo first. By having the chemo and herceptin it would put my chances of recurrance from 11% to 8%. For a 3% difference I decided not to have it, especially as my onc said if it were his wife he would say not to have it.
Every case is different. If you are 8/8 for both hormones as I was, then its worth asking for percentages to see how much it will benefit you.
Did you have lympho-vascular invasion? That increases chance of spread even if your nodes were neg.
If I were you, with a stage 2 grade 3 tumour I would have the chemo.
And if you are HER2 pos then you would have to have chemo in order to have the Herceptin.
It is a very personal decision. I was pulled off of chemo after 4 doses because it was causing me so much trouble. But I am very glad I had the doses I did.
There is no concrete proof about anything unfortunately so it all depends how aggressive you want to be with your treatment. My tumour was 1.3 and grade 3 but because of the LVI I still went for chemo.
Ask the onc what s/he would do if you were his/her daughter.
Good luck.
Oh and by the way - when discussing percentages and recurrence risk with the onc make sure you are getting the recurrence percentage and not the mortality percentage - there is a world of difference between the two.
Thanks for your comments and advice on this Lolly73 and Msmolly. The consultant wrote down a note for me explaining that my HER 2 status is 2 (on a scale of 0 - 3) which he said means I wouldn’t be responsive to Herceptin. Does this make sense and is this right? I am ER 8/8 and P/R 7/8. I now have a list of questions to ask the oncologist today - if anyone can shed any light on what I’ve been told about my HER2 status I’d be grateful by the way.
scottiedog x
hya,
I just wanted to say that i am 38 well actualy 39 today! and was diagnosed with invasive grade 3 on march 24th.Ive had three doses of epirubicin chemo and the side effects realy have been well managed.For me the chemo is imperative,purely because if there are any stray cells anywhere else,as my onc says they will be alianated.As i am having chemo before surgery,this has been particulary beneficial physcologicaly for me as i have physically felt the lumps disappearing due to the chemo…that for me in itself far outways anything else.However everyones decision is personal.
Good luck with the onc,take ur notebook haha.take care sharon xxxx
Hi
Invasive 3cm Grade 3, no spread for me. I’m 6 rounds through 8 of chemo and my surgeon and onc said my status put me automatically on to chemo, and I’m happy with that as I want to cover as many bases as I can in eliminating this. While it isn’t particularly pleasant the side effects are well managed and it is very do-able. I’m in Scotland. I thought about the swine flu issue, as the main areas aren’t that far from me although I can avoid them easily.
My view on swine flu is that if I take standard precautions that any chemo person would take to avoid any kind of flu or other infection, then I’m doing what I can and will in all likelihood be fine. If I don’t do the chemo there’s a chance the cancer will come back and that probably has a higher statistical risk of killing me than the risk of catching flu in the first place, or the docs not being able to treat the flu effectively because of the chemo. Unfortunately as msmolly says, there don’t appear to be any guarantees with treatments, the docs just give it their best guess based on studies to date. I’m not stopping the chemo, I’m just taking more care planning where I go and when and reducing my contact with other people as far as is possible. Having said that, I’m living my life, not hibernating.
Best of luck with your decision.
Happy Birthday smallstar! 
Hi Scottiedog
Just returned from seeing my onc too, expect you have seen yours by now, but if not here goes…
My Her2 results also scored 2.
1 is negative, 3 is positive, 2 is borderline, and in my hospital (although its expensive and I understand that not all hosps do it) if you are a 2 they do a further test called a FISH test. If this then comes back positive it means you would benefit from herceptin.
I was a 2 with fish positive. I think its the 3 result that benefits the most.
Hi Scottiedog
How did it go with onc? Have you made a decision re chemo?
We seem to be pretty similar in terms of dx, just your tumour was slightly larger than mine.
I wouldnt really worry about the swine flu, even though they have put it at level 6 now. I dont think its a lot different to normal flu really. However, with node negative and hormone positive, chemo does not seem to make much difference, especially if you are given zoladex as well as tamoxifen which I was told does the same as chemo.
I would be interested to see what your onc has said re percentages of recurrance with and without chemo.
Lolly xx
Hi. I have decided that I will give the chemotherapy a go. I’m to start 6 cycles of FEC quite soon. The oncologist told me that they can’t tell me at all if I will benefit or not from chemotherapy, and it’s possible that it won’t have any effect on my outcome, but there’s no way of knowing. He did say that recent American research shows a drop in recurrence rates of 7% for women in my position who opt for this treatment. He also said that if it was his wife in this position, with my circumstances, age, size of tumour etc, he would recommend it to her. He did say that a number of people choose not to go down this route, and I felt no pressure to go ahead. I asked the onc if I could take a tranquilliser for the first cycle. He said no problem, so that will help at least. I’m still not 100% certain I’ll do it, but I reckon I will steel myself to give it a go. Can always opt out I suppose. Worryingly, there are a lot of side-effects, including a 2% chance of heart muscle problems. My HER2 status (of 2) is negative according to the FISH result he told me, so I wouldn’t benefit from Herceptin, and I have no lympho-vascular invasion. Came away feeling drained and just as scared as ever. Thank goodness there are support networks like this. It seems we all have our own individual pathways through this, but some days it just all seems a bit bleak, and this has been one of them. I think I’m just finally coming to terms and facing up to the fact I have (or have had) BC. It is the uncertainty that is hard to deal with now, and overall it’s a tough old journey this isn’t it! The good news is always tinged with bad news (or vice versa) - a bit like a joke my pal told me recently -
HUSBAND: “Tell me some good news that will make me sad at the same time”
WIFE “Your dick is bigger than all of your friends!”
(hope that didn’t offend anyone - Sorry if it did).
love, scottiedog x
Hi ScottieDog,
I was in same position as you with regards to chemo and also posted a thread on here about people refusing it. It is very hard to understand why they are offering it as the lump has been removed
and there is no spread of lymph glands.
I had very good non-reoccurance rates due to size of tumour and
the fact there was no spread and when they tell you the chemo only
makes a 2 or 3% difference of it not coming back, you do question
are the side effects worth it.
What in fact swayed me was the people on here, who for one reason
or the other was not offered chemo, or decided not to have it and
have then got the cancer back at a later stage. I was also persuaded by my husband, children and close family members to take
everything they throw at you and then at least, god forbid if it
does come back, you know you did try every possible treatment to
try and prevent that happening. My ONC told me that there are very
few people who actually turn down the chemo.
I had my 2nd lot of chemo last week and whilst it isn’t nice, I have
only felt ill for the first 5 days on both treatments. Side effects
are constantly feeling & being sick, metallic taste in mouth and
slight upset stomach. I’m not going to lie, you do feel like crap
for the 1st week, but after that I have been returning to work and
trying to carry on as normal. As other people have mentioned, it
is horrible, but doable and there will be light at the other end of
the tunnel. I have booked a holiday for between my treatments to
have something to look forward, otherwise think I would go mad!
Good luck with your 1st one x
Good move Scottiedog.
Valium - as well as zoning you out, is often used with FEC to help with the nausea. I used to take one an hour before I got my chemo dose and then at regular intervals afterwards.
You are zonked but that is no bad thing. I always used to remember that line in “Withnail and I” - " Right, here’s the plan. First, we go in there and get wrecked, then we eat a pork pie, then we drop a couple of Surmontil-50’s each, means we’ll miss out on Monday and come up smiling Tuesday morning."
Good luck.
hi everyone. Lolly73 I’m very interested to read about Zoladex and what your oncologist told you about it as an alternative to chemotherapy? If you have any more info could you let me know. Happy to be PM’d. I have the opportunity to take part in a clinical trial “to determine if the use of goserelin(ie Zoladex) will prevent an early menopause in breast cancer patients receiving chemotherapy”. The information leaflet does not mention the benefits in terms of preventing BC recurrence, and my onclologist didn’t mention any, however after looking on some websites, it is a common treatment for BC. If I opt into this trial, I have only a 50% chance of beimng in the group receiving Zoladex and ONLY for the duration of my chemotherapy. I also want to quiz my oncologist why I am not being offered Zoladex as part of my normal treatment and for a longer period of time! I’d be interested to hear from others who have been offered Zoladex (goserelin) or who are on this particalur trial or have other views. Is it an alternative to chemotherapy? Phew!!! So much information out there, but no certainties are there ladies, guess that is the hardest thing to deal with. Msmolly, I have some valium and have found it invaluable at times, and my onc told me he would recommned lorazepam (very similar I think) during my first cycle of chemo as I would be so very anxious. Smallstar, glad the chemo is bearable for you. Marble1966 thanks also for your advice. CaroleD - your advice is sound I know but I can’t put the whole Swine Flu issue to the back of my mind. I suppose I might start chemo but there is always the option to discontinue if there is a swine flu outbreak in my east of Scotland location. I just read a leaflet which said that those with immunosuppressed conditions (such as are caused by chemo) are at an increased risk (both of contracting the flu and of further complications / recovering). Can I ask you all what other drug treatments you are receiving either during or post chemo? Love to everyone else on this thread. Sorry this is so long and rambling, and seems a bit me, me, me. I am very inetrested in everyone’s personal journey through this.
Love and warm wishes, scottiedog xx
Hi Scottiedog
I am not saying that zoladex is an alternative to chemo.
However, I was told that in my situation (being node negative, small lump and 8/8 for both hormones)that zoladex AND tamoxifen TOGETHER will do the same job for me as chemo would.
My bcn told me that zoladex switches off the ovaries and tamoxifen mops up the cells (or rather stops oestrogen sticking to them). I have said this on here in a previous post and some people seemed to disagree. I have only got the info I have been given for my particular cancer from my specialists.
I know that different areas and different oncs have very different opinions, especially when it comes to zoladex.
For me being 34 at dx it was very important to switch the ovaries off being pre menopausal and ER+ 8/8. I have had no problems with the zoladex and am happy I was offered it.
Hope this helps.
PS I was supposed to be on zoladex for 2 years, but am now stopping it because I am having my ovaries removed instead, as my onc feels this is better for me long term as it will stop the main source of oestrogen permanently
Hi Lolly73. Thanks for your info, it is helpful to bounce various ideas and thoughts off eachother. We do need a bit of blind faith in what our own oncologists tell us, and I’d like to think we are all being offered the treatments that suit our own particular and unique sets of circumstances. Have you a date for your surgery? Hopefully it’s soon and then it’s another step in the right direction towards the end of your treatment. Take care
Love Scottiedog x
Yes its 9th July. Not a good month in our house cos my 6 year old has to have an op on 24th July!
After my oopherectomy I will stay on tamoxifen until next April (2yrs in total) and then change to Arimidex or similar.
Hi Scottiedog
In response to your question about other treatments we get post chemo, I get 6 weeks rads, which appears to be a considerable time going by what others get, and I have no spread. But what the heck, if that’s what they do at Wishaw, that’s what I’ll take. Throw everything at it. Then Tamoxifen for 5 years. That’s the one for pre-menopausal. If you go menopausal during that time they switch the drug but I can’t remember what they switch it to.
You mentioned the potential effects on heart etc. Remember, if you are strong at the start damaging effects are less likely anyway.
Oh, and if you’re the east coast, Falkirk’s probably the closest swine flu bit to you, and there’s not been a peep out of that area since this started as far as I know. Just do your Howard Hughes bit for a while and act the recluse, but do remember to cut your finger nails and wash every so often. That reclusive look is just a bit too gross! 
Lolly73, that’s what I understand about Zoladex and Tam too. I’m also considering discussing the ovary removal issue. In fact, I’m up for the whole hysterectomy if they’ll think about it. No use for the bits, so why not remove a lot of risks at the one time. Then again, I’m heading for 46 so it’s not a big issue for me.