Today I met with my surgeon, I'm booked in for right mastectomy and full node clearance for 15th August. He told me chemo has failed and done nothing. Hearing that had my head spinning. I've just spent six long months being poisoned with toxic shit for nothing. I'm due for my very last chemo next Tuesday and unless my oncologist can give me one good reason why I should do it, they can get f##ked. All I can think of is if for the last six months it's done nothing then where else has it spread in the meantime. I feel so pissed off right now and am in tears. Also he said the risk of lymphedema is high given I'll be having radiation as well. Does this mean you have it for life and permanently have to wear compression sleeve. I was told at the beginning of all this it would be just the sentinel node, but seeing as chemo failed the lot have to go. Screw CANCER, there is just so much to look forward to.

Your reactions are utterly understandable - this is a big disappointment. I can't speak about radiation as I had none, but lymphoedema is, as far as I am aware, not inevitable if you have lymph nodes removed. Like so many other things, it's variable (unfortunately in your case so was the chemo!). If I had been told when I started treatment (surgery, chemo, Herceptin and hormonal treatment) that I would get lymphoedema and wear a compressson sleeve, I might have balked at the treatment. Which would have been a really bad move.Knowing you have a risk is frightening, but it also means you can keep a steely eye on things and get treatment as soon as possible if it occurs. Early treatment is more effective treatment. But you may not get it at all.No, there is not a cure at present - there are a number of people advocating for more research and more awareness. I do wear a compression sleeve, it doesn't rule my life, and it doesn't affect almost anything I do (I look a bit daft in a hot spa keeping my left arm out of water but I can live with that!). You are understandably feeling let down, miserable and angry. But if you can, in those circumstances, don't see everything in the future in a dismal light. Coping with things when they happen takes enough energy, you don't have to start coping with things that haven't and may not.Thinking of you.

@LMK74 That really sucks!! Sorry to hear you have gone through chemo to have it not be successful. How disappointing, frustrating and scary for you. Just another shock to your system. I had three lymph nodes removed which is nothing compared to a full node clearance. However I do seem to have oedema of the breast not my arm. It is annoying, but it doesn't necessarily mean you will get lymphoedema in your arm (fingers crossed I'm hoping). As for your last chemo, can you see your medical oncologist? I'm sure they're in contact with the surgeon and can give you further advice on why you would need your last chemo session.Here's hoping you get some answers and will feel at peace with the decisions to be made.Lisha xx

That is rotten news. No wonder you are upset and pissed off. I cant help as i havent experienced this but Afrasers last paragraph above seems like great advice for all of us tho. Sending you hugs. Xxx

@LMK74 I can understand why you're so angry, frustrated and disappointed! Chemo sux, but most of us get to walk away feeling it's acomplished something. Cancer is shit. The goalposts are always moving. I'm sorry. I had a mastectomy with axillary clearance and will have rads too. So far so good. Not even a seroma after surgery and healed like a champ. No one even mentioned lymphodema, just gave me a pamphlet in my pre-op pack. Maybe you won't get it. Hope you can find a way to process it all and move forward xxx

@LMK74 I am so sorry, what shitty news!!! You have every right to be pissed off big time!! That's how I felt at my recurrence in 2015...to be told radiation and lumpectomy I had 4yrs prior and tamoxifen for 4yrs didn't work!!! It blew my mind!!! Indescribable the rage I felt, so I can only imagine how you feel. I did chemo 2015 4.5 months it was HELL!!! I don't see what benefit then is doing the last one at all if he said it hasn't helped. I would be very upset, so take some time to gather your thoughts...scream and cry and let it out, give yourself some space to digest and regroup to what is next. Sending a huge hug!!! Melinda xo

Got told today chemo failed

Afraser
Member
8 years ago
Your reactions are utterly understandable - this is a big disappointment. I can't speak about radiation as I had none, but lymphoedema is, as far as I am aware, not inevitable if you have lymph nodes removed. Like so many other things, it's variable (unfortunately in your case so was the chemo!). If I had been told when I started treatment (surgery, chemo, Herceptin and hormonal treatment) that I would get lymphoedema and wear a compressson sleeve, I might have balked at the treatment. Which would have been a really bad move.
Knowing you have a risk is frightening, but it also means you can keep a steely eye on things and get treatment as soon as possible if it occurs. Early treatment is more effective treatment. But you may not get it at all.
No, there is not a cure at present - there are a number of people advocating for more research and more awareness. I do wear a compression sleeve, it doesn't rule my life, and it doesn't affect almost anything I do (I look a bit daft in a hot spa keeping my left arm out of water but I can live with that!).
You are understandably feeling let down, miserable and angry. But if you can, in those circumstances, don't see everything in the future in a dismal light. Coping with things when they happen takes enough energy, you don't have to start coping with things that haven't and may not.
Thinking of you.
EarthWalkerLish
Member
8 years ago
@LMK74 That really sucks!! Sorry to hear you have gone through chemo to have it not be successful. How disappointing, frustrating and scary for you. Just another shock to your system. I had three lymph nodes removed which is nothing compared to a full node clearance. However I do seem to have oedema of the breast not my arm. It is annoying, but it doesn't necessarily mean you will get lymphoedema in your arm (fingers crossed I'm hoping). As for your last chemo, can you see your medical oncologist? I'm sure they're in contact with the surgeon and can give you further advice on why you would need your last chemo session.

Here's hoping you get some answers and will feel at peace with the decisions to be made.
Lisha xx
Vallerina
Member
8 years ago
That is rotten news. No wonder you are upset and pissed off. I cant help as i havent experienced this but Afrasers last paragraph above seems like great advice for all of us tho. Sending you hugs. Xxx
Molly001
Member
8 years ago
@LMK74 I can understand why you're so angry, frustrated and disappointed! Chemo sux, but most of us get to walk away feeling it's acomplished something. Cancer is shit. The goalposts are always moving. I'm sorry. I had a mastectomy with axillary clearance and will have rads too. So far so good. Not even a seroma after surgery and healed like a champ. No one even mentioned lymphodema, just gave me a pamphlet in my pre-op pack. Maybe you won't get it. Hope you can find a way to process it all and move forward xxx
melclarity
Member
8 years ago
@LMK74 I am so sorry, what shitty news!!! You have every right to be pissed off big time!! That's how I felt at my recurrence in 2015...to be told radiation and lumpectomy I had 4yrs prior and tamoxifen for 4yrs didn't work!!! It blew my mind!!! Indescribable the rage I felt, so I can only imagine how you feel. I did chemo 2015 4.5 months it was HELL!!! I don't see what benefit then is doing the last one at all if he said it hasn't helped. I would be very upset, so take some time to gather your thoughts...scream and cry and let it out, give yourself some space to digest and regroup to what is next. Sending a huge hug!!! Melinda xo
primek
Member
8 years ago
Try to get an earlier appointment with your oncologist to talk all this over.

My sister in law had metastatic endometrial cancer, very advanced on diagnosis. Chemo got rid of all her distant metastases, just didn't shrink her primary. What I'm saying is...it may not have done what the surgeon hoped for, but it may have destroyed those strays. Surgery will be rid of the primary. Your oncologist may well have another plan in mind.

I can fully understand your devastation ar the news. We are here to listen. Kath x
Zoffiel
Member
8 years ago
Ok @LMK74 we need to define 'failed'. I'm with @primek This is a shit of a disease and there are absolutely no guarantees that any of the treatments will work as well as hoped but there is a chance, albeit slim, that you haven't completely wasted your time and that the chemo that didn't shrink your tumor may have helped check the progression of your cancer.
You know, I reckon one of the nice things about this site is everyone tries to be nice but sometimes someone needs to say it. Fuck, fuck, fuckity fuck. My apologies to anyone that may be offended. Margxxxx
Molly001
Member
8 years ago
Well said @Zoffiel
Glemmis
Member
8 years ago
@LMK74, that is really crap, the chemo probably kept it from advancing & hopefully surgery will get the rest. I had a full axillary clearance & developed lymphodema but my lymphodema therapist thinks it was due to chemo. My reading has reduced from 22 to 9 which is now normal. I wore a sleeve daily but now only have to wear it for 2 hours at night & if still same in 6 weeks no more sleeve. It may not happen to you, it didn't to anyone else I know.
Glemmis
Member
8 years ago
@Zoffiel, you have it in a nutshell!