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Chemo - or not?

16 REPLIES 16
lisa79
Member

Re: Chemo - or not?

Hi Liz,

If it helps, I bailed out of FEC-T after only one FEC. Will it make a difference on my long term survival or risk of recurrence or new primary? I don't know, but will let you know if (God please forbid) it happens...

To put my decision into context, I had IDC with a bit of DCIS; tumour was 1.5cm (i.e. "T1") when they did my WLE. I had a micromet in one of four nodes sampled at SNB (which they did with my WLE so only one op). The pathology report also showed LVI; my margins were apparently clear at 3mm (the deep) and 1mm (the anterior) - I didn't think what was enough to say they were clear, but I'm no expert! I was grade 3, and 33 years old at dx last August. I "N1" owing to the micromet which was 0.6mm. No distant mets found prior to my WLE and (so far!) no sign of anything new. I am ER+ 8/8 and had radiotherapy in spring, now on tamoxifen.

When I first met him, my onc told me that chemo was needed as my cancer was "on the move", i.e. because of the micromet rather than LVI as far as I understand it. He said my 10-yr survival stats were 5-10% higher with chemo than without.
However, I only did one cycle of chemo before I told him mentally/emotionally I couldn't cope with more. He then said "we'll, you did one" and he and my BCN said surgery was curative and rads and tamoxifen were more important than chemo in regards a recurrence and keeping any stray cells under control. They really don't seem fussed I didn't finish, and another BCN has since told me quite a few ladies decline or don't finish chemo I even when grade 3.


So I think they saw chemo as an extra insurance policy owing to my age - they said they wanted to give me the best chance of another 30 years of life (I didn't ask why only 63 years in total was ok - and that was before chemo brain too!!). But there aren't any guarantees with this beastly disease - we rely on stats and maths rather than science I think, as we dont know how many cancer cells and where they are in our bodies, or if they will grow uncontrollably into a tumour, and even with chemo we aren't "immune" to new cancer or a recurrence. I may have taken a risk by not completing chemo, but as I am still "chemo naive" it's still an option should I have a recurrence or new primary. Plus I have tamoxifen to rely on.


I hope your rads goes well. I'm four months out and still get stiffness/tightness under my armpit and across my breast, plus a lot of fatigue, but it is getting better slowly. I would say it was worse than surgery - hopefully that means it has done some good!

Best of luck with your journey.
Lisa xx
JCJ
Member

Re: Chemo - or not?

If it helps, Liz, I declined chemo too. Grade 3, 2.8cm Er +ve. Clear margins, clear nodes. Age 51 but still not menopausal. My onc stressed that chemo often has long term side effects and would not guarantee to stop a recurrance. In my case, it would have improved my chances by 5% after 10 years. When I eventually made the decision (after a long, horrible week) I was happy with it and my onc admitted that chemo would have been 'overkill' in my case! She then put me on Zoladex injections to induce menopause and lower oestrogen levels. Statistically, this gave me back 3 of the 5% lost by not having chemo!

I'd be a liar if I didn't occassionally have a bit of a 'what if' wobble, especially when check-ups are looming, but I don't regret saying 'no thanks' to chemo and getting on with my life.

Decide what's right for you and try not to look back. It's a horrible position to be put in!
Guest user
Not applicable

Re: Chemo - or not?

Hi
You have to do what feels right for you and what you're comfortable with. I was dx (over 5 years ago) at 56, with grade 3 and 3 out of 24 nodes involved. We're all different, but you have to do what you feel is right. I know, I didn't want chemo etc and until the last minute it wasn't on the cards, but I accepted it as giving me the best outcome.
I have seen too many people succumb to this disease by refusing chemo etc, and I just wanted to do whatever it took.
The treatment is not pleasant, but is worth it. For me chemo lasted 6 months (8 cycles) but I'm here 5 years on and feeling fine & enjoying life.
I've had 5 years of Femara and my onc has now recommended another 5 years. OK, I would rather be off the tablets but I'll do whatever it takes.
Just think about it carefully. Treatment doesn't last long, but does give you the best outcome.
Guest user
Not applicable

Re: Chemo - or not?

Hi

I have IDC, 2 cm, grade 3, 0/2 nodes, ER+/PR+ (8/8), HER2 -. My Onc told me I was borderline for chemo despite having a grade 3 tumour. I opted for chemo and had 6 x FEC, I start 30 x rads & tamoxifen tomorrow. According to my Onc I had a 'worse than most' time throughout chemo and was neutrophenic EVERY time, however would I change things, hell no! At 44 I want to live many more years with cancer just a blip on my radar, so having chemo was a no brainer but that was my 'personal' decision as this is yours. Only you can make that decision.

The best advice I can give you is if you can look yourself in the mirror and be happy with your decision - then it's the right one for you.

All the best with whatever you decide and good luck for the future.

Dyane
poemsgalore
Member

Re: Chemo - or not?

Good luck Liz. I'm sure you've made the best decision for you and your situation.
Poemsgalore xxx
Aguila
Member

Re: Chemo - or not?

Thank you all for your open and honest replies, I appreciate the time you have taken to consider a response and the emotions evoked because of it.
Lakeslover sounds the closest to me in diagnosis but my sentinel nodes were clear. Thinking hard about the meeting with my oncologist his prediction tool demonstrated a significant improvement on relapse rate with rads and hormone, but very little with chemo, so why put off, for 5 months, the treatment that works for something with so little benefit? In my mind I should get started on the treatment that is most likely to make an improvement now.
Also, during our conversation the onco hinted that he wasn't even certain that this cancer would benefit from chemo, apparently there isn't much evidence to support it.
So, with this in mind, I have decided to decline the offer of chemo, get started on rads and move forward with my new life.
Good luck to you all on your journeys
Liz
Lakeslover
Member

Re: Chemo - or not?

Hi,
I was in a similar position, grade 2, just the sentinel node positive, strongly ER positive, age 50. My oncologist said chemo would increase my 10 year survival by around 1-2%. Taking tamoxifen made a much bigger difference. I opted not to have chemo, had rads and am taking the tam.
it is a very personal decision, for me I felt the side effects of chemo outweighed the potential benefits, but I can understand the other viewpoint as well. I am 18 months down the line and clear so far, but I have had the occasional doubt. When I do I revisit my decision in my mind, and know I would make the same choice again.

whatever you decide the most important thing is that it is your decision, and you will have to accept and live with it.

chascat
Member

Re: Chemo - or not?

Hi Liz
i had a 19mm grade 2 tumour, strongly ER+ and I was told I was borderline for chemo and the benefit was only about 3%, which might not be enough for some people, but what if I didn't have it and I was one of that unlucky few? I wasn't prepared to take that risk. I had 6 x FEC and 20 radiotherapy and on the whole was relatively well, I worked through most of my treatment and had my 4 year old daughter to look after too. I'm not saying I didn't have bad days because I did, but they weren't that bad and were few and far between, I realise this isn't the case for everyone but it's not uncommon either. Your tumour is fairly large, chemo does not offer a guarantee that cancer wont return but suppose you have to ask yourself if you did decline chemo how would feel if it did return, would you be thinking "if only". For me it was a no brainer, a few weeks out of my life to give me the peace of mind that I'd done as much as I could, the rest was outside of my control.
Take care and let us know what you decide.
Lydia x

Guest user
Not applicable

Re: Chemo - or not?

I was in a similar position- grade 2 IDC no nodes affected, would gain 3% additional chance of surviving another 10 years if I took chemo. I'm 40, with 2 kids- I do not want to be one of the 3 women out of 100 who don't make it due to not taking chemo. I would obviously have made different decisions if I had serious medical history. Infections are a risk. But precautions can be taken. I've done one of my 6 FEC treatments so far. It's not nice, but it is bearable, and a week after 1st dose I felt pretty much back to normal.
I asked my oncologist what she would do if it was her. She said that there was always a risk of over treating someone in my situation, but that taking the chemo would be her choice so that looking back she would have no regrets. I also asked her if its possible to stop at (say) 4 out of 6 if I couldn't bear it- she said that that was always possible, too.
I do have moments where I wish I'd just gone straight to rads and skipped the chemo, mainly because it takes sooooooo long. 18 weeks is a long time to be a patient. But I think I made the right decision for me. Good luck x
BlackSwan
Member

Re: Chemo - or not?

Jan_mints, I completely understand your decision. In that position I think I would have made the same choice as you. Thanks for sharing.
Jan_mints
Member

Re: Chemo - or not?

Yes BlackSwan I do know the basis of my oncologists advice which he put in writing to me too so I could be clear about the information he was giving me.
My previous medical history and other factors suggested to him that I would be extemely likely (75%) to develop neutropenic sceptiscemia and other serious side effects and as I said, this advice was very personal to me and not the general rule by any means.
I did not make the decision lightly and asked him what he would actually advise me to do rather than ask me to decide based on the risk factors and he, himself said, he wouldn't put me through it with those odds. We had a really long and detailed discussion and I felt empowered by my decision which I feel is right for me.
I do think we have the right to take control of our bodies and the medication and treatment we receive as long as we make informed decisions and not decisions based on fear or ignorance. I would still urge the original poster to find out as much information as she can and ask as many questions as possible to take the right path for herself.
BlackSwan
Member

Re: Chemo - or not?

Jan_mints, do you know the basis of your oncologist saying 75% of chemo making you very ill for 18 month to 2 years?

Is that true in general or was that because of some pre-existing medical condition you had?

I've never heard of this - I thought most people are fine within a few weeks of the last chemo, although some people might have longer lasting after effects.
Bumpkin
Member

Re: Chemo - or not?

Hello Liz
This is only my second post, so I am more or less a 'newbie'. I had Stage 1 Grade 3 IDC 18mm tumour removed last August. I was told chemo would give me a 3% greater chance over 5 years. I took it and so had 6 x FEC followed by 18 x radiotherapy treatments. The chemo was bearable. It is a very cyclical thing. The first week I did not feel great, the second I did not enjoy giving myself the daily injections, but aside from bone pain and food tasting rather strange, it was a better week. The third week I was almost back to normal. The cumulative effect of the treatment weakens your immune system but you can try to safeguard against it by following the good advice given. Baldness was shocking at first then suddenly no problem at all.
I don't know how successful chemo is at keeping cancer at bay. All I know is that in March this year I found a new lump on the other side, a new primary, not a recurrence. It is a stage 2 3cm, grade 3 tumour this time, removed with a lumpectomy at the end of May. Unfortunately,the margins were insufficient, so I had another WLE yesterday. I am hoping for the best. I have been told I will have a different chemo this time, but it is highly recommended due to it being Grade 3 and only weakly ER and PR positive.
One thing I do know is that it is very wise to consider carefully the advice you are given. We are all different. My oncologist could provide no reason why I got a new primary so soon, but said it may have been lurking there all the time and that the chemo had kept it at bay.
Good luck with whatever you decide.
Bumpkin
BlackSwan
Member

Re: Chemo - or not?

My tumour measured 3.6cm by ultrasounds and 4.7cm by MRI. I think it is not uncommon for different imaging techniques to give different sizes. It was grade 2 ductal, but I had 2 bad lymph nodes and was HER2 positive.
I was told that my tumour was a large one.
I was advised to have everything: chemo, herceptin, surgery, ANC, radiotherapy and hormone therapy, and I'm doing everything they tell me to do.
So far, it has not been as bad as I thought it would be. The chemo is the worst, but you just get through it and it is sooo nice when it is done.
I'm not sure what I would have done if it was borderline. One advantage of having the works (as advised) is at least you don't end up at some future stage wishing you had. If you skip something and you get a recurrence further down the track, you might wonder what would have happened if you'd had the full monty.
However chemo is not without risks, the main one being getting an infection while your white blood cells are down.
Jan_mints
Member

Re: Chemo - or not?

Hi Liz,
My story sounds similar to yours except mine was grade 3 Invasive Ductal 3.8cm with no node involvement. I am both oestrogen and progesterone positive but protein negative. My oncologist spent an hour with me talking to me about risks and my medical history and support network. He offered me chemo but between us decided that the chemo would do me (personally) more harm than good.
He actually told me that there would be a 6% benefit to having chemo however, 75% chance of making me very ill for 18 months to 2 years and as I live alone, he advised that he wouldn't accept those odds for his wife which made my mind up.
I am 51, had bilateral surgery in May, just started on Tamoxifen and starting rads on Thursday.
My advice would be, talk to the experts, your BCN, your oncologist, your GP and make an informed decision. It is not a decision that should be taken lightly or rushed. Write down all of your questions and ask them.
Chemo is still available to me if I feel I need it down the line but for now, I am moving forward without it.

Good luck in whatever you decide
Jan x
poemsgalore
Member

Re: Chemo - or not?

Hi Aguila

What a decision! Usually, grade 3 cancer does require chemo, but grade 2 is a different matter. I was grade 3, so did have it. I'm now taking Anastrazole (another anti - oestrogen drug is called Letrozole) Could one of these be the drug you will go on?
When I say I had chemo as I was grade 3, I didn't know the usual procedures. My onco gave me the option but didn't use the prediction tool, so I had no idea what benefits it gave me. But I decided to have it as I knew that if I refused, I would forever wonder whether I should have said yes.
Before you decide, read a few posts in one of the 'undergoing treatment: chemotherapy'. I'm in the February Valentines group, but there is a March Marigold group, April Angels, May Moonbeams, June Jewels, and now July Junkies. We have completed our chemo course but the others are at different stages of treatment. It really isn't as bad as the 'horror stories' make out. Some feel worse than others. Meds will be given to counteract the worst of the side effects (e.g. sickness) and you can try cold cap if you are worried about losing your hair.
Good luck with your decision. Take care.
Poemsgalore xx
Aguila
Member

Chemo - or not?

Hi all. I had grade 2 lobular BC which was removed with wide margine excision, and was told yesterday that I am now clear. Nothing in lymph, oestrogen receptor positive & I don't need to worry about herceptin, the tumour was only 3.8cm. All this means I am considered borderline for needing chemo as part of the management strategy for preventing future recurrence.
Saw oncologist yesterday who did something clever with a prediction tool which showed that chemo would have little, if any impact at 5 years, and only 3% at 10 years. He said that because it is so borderline it is difficult to advise me, as the benefit is so small, yet he is obliged to offer chemo should I choose to take it. He requires an answer from me next week.
If I take it it will be FEC for 6 cycles, followed by 3 weeks of radiotherapy and a hormone pill (the name of which I have forgotten, but not Tamoxifen because I am over 50, but defo something to reduce oestrogen)
I am wondering how many of you had to make the same decision, and what helped you to decide?
Thanks in advance for ANY advice, if it helps you to phrase your reply I am completely on the fence about it, but will confess to being scared to death of having chemo because of the horror stories I have heard, yet prepared to do the sensible thing.
Liz