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Anyone refused Chemo?

38 REPLIES 38
lankylass
Member

Re: Anyone refused Chemo?

Well I saw the onc and the Predict test shows 83% 5yr survival and 78% 10 yr survival if I have FEC-T plus herceptin.  10%/15% better chance so it's a no-brainer really. My daughter totally supports even though we had a laugh as she was saying it was only last week that I'd definitely decided I wasn't having it!!

Like you I've been really undecided but I bit the bullet and signed the consent form even though the serious side effects section reads like a horror story and freaked me out a bit(risk of death etc).

Starting end Feb - just got to get on with it now. If anyone else is starting on the same regime of treatment it would be good to buddy up. 

 

gazzlyn
Member

Re: Anyone refused Chemo?

Hi Sarah,

 

I have ordered quite a bit from Anna Bandana and I am really pleased with the quality for the price you pay compared to others.  Like you, I wish I didnt have to wear this stuff but least it is there when I need it.  I am getting a wig for when I go out but I think the hats/scarfs etc will be ideal for around the house and nipping to the supermarket!

 

I have been told I am having FEC so same as you, I also think Rosie will be starting around the same time as us but not sure what treatment she is having.  Least we can share our experiences.  Hopefully you will get your date soon, but I will let you know all about it after my visit next Thursday Smiley Frustrated.  We will do this 🙂

 

Take care

Lynda xxx

JETS
Member

Re: Anyone refused Chemo?

Pps - sorry have realised that the original thread here is a bit strayed from path x will use other threads x
JETS
Member

Re: Anyone refused Chemo?

Ps I will bbon fec not fec t - do you know what kind of cocktail u are getting ?
JETS
Member

Re: Anyone refused Chemo?

Hi Lynda xxx I have had a similar experience with my gp receptionist. A friend recommended Anna bandana as a site for hair stuff - been on and quite liked some of it ( Well ... In the context ...) made me feel slightly reassured that I could try to manage my appearance a bit xx hair cut tomorrow - was already booked for usual but will b going for shorter ( depressing - hencey headwear googling ) ..... On a positive - over by summer for us? Lots love x
gazzlyn
Member

Re: Anyone refused Chemo?

Hi Sarah,

 

I got a phone call yesterday evening to tell me my chemo starts on 19th February! Smiley Frustrated  Strange feeling as I have been waiting for this date to come and I actually felt quite sick when she told me.  She wasnt the best person to ring with her "telephone manner" and when I asked questions it was if I was asking her to move the world for me!!! Honestly, if may be "just" a phone call to her but the impact on someone who is feeling quite vulnerable was awful.  I do hope she was the receptionist and not one of the nurses! Smiley Surprised  Hope you get your date soon Sarah and we can swop notes!!  I guess I better start reading up what I might have to expect or need to get in shopping wise!

 

Take care Lynda xxx

JETS
Member

Re: Anyone refused Chemo?

Hi letter in post but expecting it to b start of March xx maybe we'll b together? Xxx lots love
I looked at chemo advice thread ( through squinty eyes kind of trying not to look) and figure sweets and pineapple sound ok 😉
Hugs
Sarah
gazzlyn
Member

Re: Anyone refused Chemo?

Hi Sarah,

 

So sorry to hear you will be following me down the route of chemo.  I totally understand where your coming from with the do I dont I bit.  I am slowly coming to terms with my decision and my daughter keeps saying to me, any slight chance is a chance worth taking.  So here I am waiting for my start date Smiley Frustrated  Do you know what the next stage is for you yet?  Big hugs to you, I hope you will start feeling better with your decision xxx

Hazelr
Member

Re: Anyone refused Chemo?

Please don't be scared, I have had 3 now and another 3 to go and it is horrible in that chemo week but on my weeks 2and 3 I feel normal and then I have to do it again. As everyone will say it is different for each of us but it's a funny feeling to know you are going to feel ill in advance but it only lasts a few days and then you re ok again. I'm dreading surgery more the anything and have to make some decisions about that in the next few weeks so feeling very anxious about it. if it's not one thing it's another. if you don't have chemo and it comes back how would you feel? Talk to your daughters if you can and get on here if you feel like ranting in the middle of the night xx
Rosemaryanne
Member

Re: Anyone refused Chemo?

Then you can justifiably cuss and call hell out of him, if you don't feel too good.

HIS FAULT!!!

I'm glad you're starting to come to terms with what was a difficult decision, but which means you will be that extra 1 in 20 who will have a healthy future at the end of all this

xxxx

 

JETS
Member

Re: Anyone refused Chemo?

Hi rose * hugs* - will fb u tomorrow my love xxx onco test debated but oncologist felt Chemo right decision his words "I'm making it for you really" xx
JETS
Member

Re: Anyone refused Chemo?

Hi Mel xxx thx - never has a comment meant more to me!! I'm feeling a bit better about it now - had a bit of a panic attack about it all - oncologist said 4 months then rest of ur life o get on with ... No one s pretending this will b easy but am a bit more comfortable with decision now xx thx again xxx
Rosemaryanne
Member

Re: Anyone refused Chemo?

Hi Sarah

So very sorry you had to face this decision, I'd so hoped it wouldn't come to this for you.

Easy for me to say, I know, but I agree with Mel. You made the right choice in throwing everything you can at this. You'll never know if you would be one of the 92, but it's better to ally yourself with the 97, surely?

I played with the predictor and it showed 90% survival chance for 10 years for me with rads and hormones. Not amazing but there is nothing that can be done to improve it. You have that opportunity, you must seize it.

I HATE your situation, I HATE that you have to go through this, I LOVE that you have the courage to do it.

Did you get the Oncotype test or was this an assessment based on statistics?

So much love

Rose xxx

 

 

 

Mel66
Member

Re: Anyone refused Chemo?

Hi Jets
For what it's worth, I think that you have made the right decision by agreeing to chemo.

I really do know how you feel... I was stood in your shoes last august feeling exactly as you do now. (also single parent, teenage child) I cried all the way to the hospital on my first chemo day because I was so traumatised by the whole thing.

It's now 2 months since my last chemo. My hair is beginning to grow back and it's all behind me. Meanwhile I've thrown everything in the NHS's arsenal at it and given myself the best chance I can, and I know that is what my son wanted and needed me to do.

Chemo isn't nice... but it's doable... and it's only temporary... and you'll come out of the other side knowing you've done everything you can to beat this. It really isn't as horrendous as we build it up in our heads to be.

((Hugs))
JETS
Member

Re: Anyone refused Chemo?

I just came back from my oncology meeting and didn't know what to do - I'm
N the end signed up to chemo but think I may have made a mistake? I am terrified - literally terrified.... It's improving my chances by 5 out of 8 people - ie 8 people out of 100 with my cancer would die if they dint have the chemo ( and hormones) by taking the chemo 3 out of that 8 would die - somI reduce my chances but could be in that 92 people who wouldn't have died anyway.,,,,I'm a single parent to teenage girls ... It will be four months then over....but Imjst don't know if I should have refused - the chemicals are scary.....
Penfold0_0
Member

Re: Anyone refused Chemo?

 
NAZ
Member

Re: Anyone refused Chemo?

Hi Beebeck
How are you getting on? Did you have the chemo in the end? No,' the toxic sludge ' isn't nice, but when I was offered chemo back in 2010, I took it. I had two little ones to think of, a partner and family, hope you are doing well now?

lankylass
Member

Re: Anyone refused Chemo?

Two weeks after L mastectomy and I have my results ER- PR- and Her2 not yet received but I wouldn't be surprised if I ended up triple negative what a b@mmer. 

So I had 48mm DCIS 17mm invasive and 1/3 sentinel nodes positive.

See the oncologist next week for discussion about chemo. And I have a small area of necrosis on my scar so my formerly C cup runneth over.

But have been told that my expander pumping up can still go ahead once the area heals and then down the line my permanent implant can be inserted. And do I want to take part in a randomised clinical trial of chemo only or chemo plus axillary clearance? So that's OK isn't it!

If I was well enough to drive the car I'd be out on the fells having a good stamp and shout round the countryside. 

At this moment it seems a bit belt and braces and I feel like rejecting the chemo for the minute % chance it won't recur. 

 

Beebeck
Member

Re: Anyone refused Chemo?

Hi - l havent got any kids and my partner of 12 years died last July so l dont have to take those things into consideration - good luck x
poemsgalore
Member

Re: Anyone refused Chemo?

I definitely agree with you both pink runner and cornish girl. My husband wasn't entirely happy when I agreed to have chemo. I have a few other serious health problems that having chemo could have impacted on. Even my oncologist was a bit concerned. But I surprised everyone - including myself - by sailing through it. Although I did have a couple of hospital stays, one nothing to do with chemo. When I found out half way through the treatment that I had vascular invasion, even my husband was glad I'd said yes. As you said pinkrunner, we don't feel as though we really have a choice. 

 

Best wishes to everyone, and Beebeck, whatever your decision, I respect your choice. You do have all the facts before you, but we can't help but worry that you will be ok, 

 

poemsgalore xx

pinkrunner
Member

Re: Anyone refused Chemo?

Hi Beebeck

 

I know exactly where you are coming from.  I had a Stage 2 tumour removed in december and 1/15 of my lymph nodes was positive.  Unlike yourself I can have tamoixifen as mine was ER positive.  The oncologist has receommended chemotherapy and I totally dread it and have considered refusing it and just having radiotherapy and tamoxifen.  My husband says he wouldn't take the chemo but having got two daughters I feel that I have no choice to give myself the chance of being around for them.  It is so so difficult to make a decision.  Are you considering refusing it then ?   The Oncologist said that it is obviously my choice but I don't feel I have a choice.   xxxxx Pinkrunner xxxx

cornishgirl
Member

Re: Anyone refused Chemo?

Hi again Beebeck,
Im really sorry if you read my post as being patronising I certainly didn't mean it to be , you mentioned in your first post that " I don't have parabens in my make up / showergel or fluoride in my toothpaste - you get the idea. " which I assumed you meant was in connection with cancer prevention treatment, if I read that wrong I am sorry.
If I'm honest with you when I read posts from newly dx ladies talking about declining cancer treatments on the forums, I get very concerned for them ,and I get concerned because I care ( and I'm pretty sure many others, especially some of the older members here or those with secondary's feel very much the same ) probably because many of us, especially those that have been on the forums for a a long time have seen the devastation that breast cancer can cause, not only to the breast cancer patients themselves but also to their families aswell.
It breaks my heart when someone looses their life to this vile disease ,so of course I would like everyone here to get the best possible treatments available to try and be able to beat their cancers so they can get back to their lives again, I recently had a totally heartbreaking experience when I was in hospital a few weeks back having met a lovely lady in the next bed to me ,it broke my heart that she had just been told that she had extensive secondary's and that her oncologist had told her that she only had 3 mths to live , the lady told me that she had refused chemo and tamoxifen 2 yrs ago when she was first dx with primary BC , it was a huge wake up call for me Beebeck, I didn't know what to say to her , there was nothing anyone could say ,but I can tell you that it was one of the most heartbreaking things for me to ever have had to witness in my life and it was bl**dy devastating not only for her but also for her family .

So rightly or wrongly I guess I get "overly" concerned when I see any newly dx ladies talking about refusing treatments , as I don't want to see people making such huge decisions without being properly informed about the very real risks that are involved. BUT.... I guess its hard sometimes to get across to others, especially when they are new to breast cancer, ( and please, I am not being patronising when I say this, as believe me breast cancer was a very steep learning curve for me when I was first dx in 2007, like it probably was for most people here in the early days) that breast cancer should NEVER EVER be taken lightly , breast cancer kills, it kills 12,000 women a yr, and we have one chance at blasting this disease into oblivion , but..... as I said in my previous post it really is not for me or anyone else here to tell you what to do, YOU have to do what's right for you at the end of the day. and if that means refusing any treatments that you don't want ,then that is your right ,all any of us here can do is help and support you whatever you decide.

Yes chemo is toxic, it has to be , the power of the disease means it needs to be powerfully treated, I do understand how you feel Beebeck, as I too hated drugs and chemicals being pumped into me, pre BC I never even took a paracetomel , but for me, I knew I had to do it all to give myself the best possible chance at life.

 

I quess i just never want to see anyone back here again in a worse situation than they are now , Sorry if my first post caused offence .

 

All the best to you .
L x

Beebeck
Member

Re: Anyone refused Chemo?

Hi Cornishgirl

 

"Lifestyle changes and useing paraben free products while a good thing from a Physiological point of view (as it can make us feel as though we are doing something to help), will however not cure or keep a cancer at bay"

 

Just for the record, I haven't just ditched the parabens etc because I have BC, this is a lifestyle choice I made a long time ago, along with becoming vegetarian and sorry, but I think what you have said there is actually quite patronising.  What I was trying to convey is that I make a concerted effort not to put chemicals into or on my body,  so the thought of having this toxic sludge coarsing through my veins, slaying everything in it's path is a double whammy for me. 

 

I know what having TNBC means, I have done my homework.  Did you know there is a TNBC foundation website, just for us lucky TNBC ladies?  What I was looking for here was whether there were any other TNBC ladies using this forum who have said no to chemo, but I think I have my answer!

 

Thank you for taking the time to respond to my post.

 

cornishgirl
Member

Re: Anyone refused Chemo?

Hi Beeback,

The thought of chemo to most people is terrifying, but most people will tell you that while chemo is not pleasant it is usealy do-able ,and it could potentially save your life.
The problem with triple neg cancers is that you are very limited with your treatment choices, there is only chemo and radiotherapy available to treat these cancers, there are no other treatment options open to you , as the other ladies have said the radiotherapy will help to kill any cancer cells remaining at the site of the tumour , however , with or without any nodes involved cancer cells can and do still sometimes escape and can set up home in other parts of your body.


Currently there are no tests/scans to be able to detect this, cancer cells have to be the size of your little finger nail to be able to be detected on a scan, having no nodes involved would be a guide that cancer cells probably haven't escaped, but is not a guarantee, having nodes involved means that the risk is much higher and that cancer cells may have already escaped and are on the move ,therfore chemo is advised . A grade 3 cancer is considered agressive /fast growing also, so in this case chemo would be advised aswell.


Cancer can come back as a recurrence ,or as a secondary , if a cancer was to come back as a recurrence you would then have to go on to have further cancer treatments including probably chemo to try and deal with this ,if your cancer came back as a secondary, then you could still have treatments to help control the cancer, but it would be to extend life , and you would no longer be considered curable,
Sometimes treatments for seconadary cancers can keep the cancer at bay for a very long time , but sadly also sometimes they do not, that is unfortunatly the harsh realities of living with breast cancer, so the best shot at treating a breast cancer is always the first one , as unfortuneatly there are no second chances with this disease.


It is not for me or any of the other ladies here to tell you what to do, people can only give you their experience and kowledge of having lived with this disease , and try to help and support you through it all, but please think very carefully before you make any final decisions , triple neg cancers are harder to treat because of the limited treatment options available ,but in the long term when a triple neg cancer reaches 8 yrs without recurrence ,they are usealy considered cured and not likely to come back ,unlike hormone positive cancers which can still come back 5/10/20 yrs later.


A 5-7% benefit with chemo is actually pretty good in terms of improved survival , some people have chemo for a much less % benefit , as even a small % benefit could be all that it takes to mop up any remaining cells.
Lifestyle changes and useing paraben free products while a good thing from a Physiological point of view (as it can make us feel as though we are doing something to help), will however not cure or keep a cancer at bay .


Have a good chat with your onc and be clear on any treatment decisions you make, you will then be able to make an informed decision about any benefits and risks involved , any decision's regarding treatments you make has be your's and your's only, only you can decide what's right for you.
Very best of luck to you whatever you decide, its a big decision to have to make.
L x

cornishgirl
Member

Re: Anyone refused Chemo?

Deleted as jumbled up text grrr , will try and repost!! x

Beebeck
Member

Re: Anyone refused Chemo?

Thanks everyone,

I am going to talk to my ONC again as having had a long conversation with Macmillan about this and the Predict tool giving just a 5-7% margin on survival/recurrence with chemo - I'm even more determined not to go down this route. I want to know how they are going to support me if I say no.  When I had my oncology appointment I thought she would explain all this to me not just go over what treatment I had then tell me that she would not be doing her job if she didn't advise me to have the cocktail of poison!  I really didn't like that for each side effect there was another drug they could pump into you to cure it, as well as the anti sickness drugs and the steroids. Im going to take a lot more convincing than 'I wouldn't be doing my job'.  We are not sheep, we are intelligent women who need to question these things. IF I get a recurrence of cancer, I will not be kicking myself because I didn't have chemo, I will deal with it as I have dealt with this, by questioning and research and talking to my peers.

Lulu34
Member

Re: Anyone refused Chemo?

Beebeck

Triple negative breast cancer is one of the most difficult to treat with poorer out comes than other types due to the fact its negative for the receptors that other types of BC have.... Even where you have cases with nodes involved you can still get recurrence or spread.

I had triple neg bc in 2009 it was grade 3 and no affected nodes.... I had surgery chemo and rads.... 2 years later it recurred in my chest muscle lymph nodes.... Again it was grade 3.... I had surgery chemo and rads....2 years later it came hack again this time it had spread to my lung and nearby lymph nodes.... Now its no longer curable, but it is controllable so after having a research that stopped working after a few weeks im waiting to go back on chemo again.

And i know you dont like the idea of toxic chemotherapy invading your body its still considered by the majority to better than toxic cancer invading and taking over your body.

But you have to live with your decision and only you can decide.... If you have treatment and never get cancer again will you feel you have been over treated.... Or if you have chemo and you do get cancer again will you wish you hadn't bothered.

Good luck with your decision..... Its really not easy when you feel your being pulled in two different directions.

Hugs lulu xx
cornishgirl
Member

Re: Anyone refused Chemo?

Hi , Just wanted to add that the difference between adjuvant online and Predict is that Predict is the only cancer stats tool ( as far as I know unless its changed recently) that takes into account HER2 and KI67 Status ,and also Herceptin as a treatment ,  ( which may or may not apply to you anyway) all of these tools seem to throw out different figures, most oncs use adjuvant online,  though I know some now use predict also like mine ,  stats are predicted on people that were dx 10 yrs ago, so I suspect none of them are entirely reliable and should be viewed only as a guide for treatment, as newer treatments and better survival rates have continued to improve over the last 10 yrs.

Stats are stats at the end of the day , we can use them as a guide, but unfortunately they can't tell us what will happen to each of us personally.

 

L x Woman Happy

stressy_messy
Member

Re: Anyone refused Chemo?

Your welcome poemsgalore 🙂

 Hi Lola65, I signed up to adjuvant online about 6 years ago and haven't had the internet police round yet lol. It is a better tool as it gives you the statistics for those who are alive and cancer free in 10 years. It's all just statistics really and we just have to hope we fall on the good side not the bad.

Xx 

Lola65
Member

Re: Anyone refused Chemo?

Hi,

 

My oncologist uses a prediction tool called Adjuvant! Unfortunately it's a locked website for the use of doctors only. Yours will probably have used this, and if you ask him he will bring up the screen and show you. I used the Predict tool but when I saw the Adjuvant! screen, the results were very different and in my case a lot better because it takes all your circumstances and treatment into account, not just bits of it.

poemsgalore
Member

Re: Anyone refused Chemo?

Whoops, sorry beebeck. I see stressy messy has posted the link I stupidly forgot to add Woman Frustrated

Thanks Stressy. 

 

poemsgalore xx

stressy_messy
Member

Re: Anyone refused Chemo?

Hi although Predict is useful in showing the % benefits from treatment the 5 and 10 year survival rate is of people who are still alive at that time which includes those who have secondary BC.

 

here's a link

 

http://www.predict.nhs.uk/predict.shtml

 

all the bestxx

Beebeck
Member

Re: Anyone refused Chemo?

HI Poemsgalore,

 

Thank you but there was no link on your post and I would really like to use it.

Thanks

stressy_messy
Member

Re: Anyone refused Chemo?

 

poemsgalore
Member

Re: Anyone refused Chemo?

Hi Beebeck

 

I am giving you the link the the 'Predict' tool with which you can work out what benefits chemo will give you. Bearing in mind you can't have Herceptin and can't have a hormone tablet like Tamoxifen etc. I wouldn't have thought you have much choice in the matter. Personally I would rather have chemo than radio - in fact, I did have chemo but not radio. Anyway, here is the tool, use it and see what you think.

 

poemsgalore

Lola65
Member

Re: Anyone refused Chemo?

As you are triple negative there is no other treatment for you other than radiotherapy and chemo. The radiotherapy should kill off any cancer remaining in your breast but as you had cancer in one of your nodes there is a risk it may have spread to your vascular system. Only the chemo can combat this. It is, of course, your decision whether or not to take that risk.  I don't know what family you have, but I suggest you talk to them. Personally, I wanted everything thrown at my cancer or I couldn't have lived with the worry that I hadn't done all I could to kill it off. I finished my chemo last July, had radiotherapy, and have 4 more Herceptin doses to go. I don't regret a second of it. I wish you the best of luck whatever decision you make. xxx

stressy_messy
Member

Re: Anyone refused Chemo?

Radiotherapy will only kill cancer cells that may still be present in the breast area and chemotherapy is for the whole body. When cancer is found in the lymph nodes this shows that the cancer is trying to make a move and cells have got into the blood/lymph system and have the potential to travel to other parts of the body. Chemo isn't very nice but it could be a life saver. 

All the best xx

Lucy_BCC
Member

Re: Anyone refused Chemo?

Hi Beebeck and welcome to the BCC forums

 

In addition to the support you will find here, please feel free to call our helpliners to talk through your concerns and queries about your treatment options.  Our team are here for you with practical and emotional support on 0808 800 6000, lines are open weekdays 9-5 and Saturdays 10-2.

 

You may prefer email contact and we have an 'Ask the nurse' service which you can access here:

 

http://www.breastcancercare.org.uk/breast-cancer-services/ask-us-your-questions/ask-nurse

 

Take care

Lucy BCC

 

 

Beebeck
Member

Anyone refused Chemo?

Hello,

I had a grade three, triple neg tumor which had spread to 1/13 lymph nodes removed in December.

I am now due to start 6 treatments of chemo.  I am really not happy about having chemotherapy.  I don't have parabens in my make up / showergel or fluoride in my toothpaste - you get the idea.  The thought of having this disgusting toxic cocktail injected into me is filling me with dread. Has anyone said no to the Chemo route and just had radio therapy? My hospital will support me if I make this decision but my oncologist said she wouldn't be doing her job if she didn't recommend me having it. I can't believe in this day and age that this one size fits all treatment is all there is.