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 | BCNA Online Network

109 Replies

melclarity
Member
9 years ago
@LMK74 you sound like you're doing so incredibly well considering. I can understand you being really P.....d off!!! From what you said of the size of you and the tumor, to get clear margins is actually huge! so that's great news! For now keep on mending bit by bit...super important keep up those arm exercises, it's amazing how quickly it gets back to normal. Human nature is though for us to nurture and not want to move the arm, but the opposite is true strangely it works and yes the bugs lol all the nerves. xx Melinda
iserbrown
Member
9 years ago
That's for sure! It's no walk in the park!
LMK74
Member
9 years ago
@Kat09, glad to hear your radiation went well. I hope your upcoming surgery is the same. I doing ok, just sore, tender and numb at the same time. I also have a crawling sensation under my arm like bugs are moving around lol. My arm and shoulder have limited movement but I'm doing all the exercises I've been given. My radiation planning appointment is on the 12th September and I need my arm above my head by then, so hoping it will have better movement by then. What a horses arse all this is lol.
Kat09
Member
9 years ago
It's hard not to feel pissed off given the results. I guess like cancer , treatment also throws us all type of curve balls. The radiotherapy went well for me thanks Lisa and my skin had the reaction they wanted..I copped some angry looking spots and some really bad fatigue 2 weeks after it was finished but they did warn me, still wasn't a happy camper though. It has really settled now and it's incredible how quickly it healed. Even though it looked sore there was now pain at all just uncomfortable and wearing gladwrap dressings was so glam, not...I hope that you are recovering well from your surgery, mine's in just over a weeks time depending on my skin...
LMK74
Member
9 years ago
Hi @Kat09, at the beginning they said mastectomy only option because of size and being a small b cup, my tumor was 6cm according to the mri. So chemo first in the hope of shrinking it down to have a lumpectomy. My pathology stated no response to chemo and that the actual size was 9cm . Leaves me wondering did it grow more in that time because the chemo did not work. I know I can't change the outcome, but to think chemo was all for nothing.
Have you recovered from the radiation Kat.
Kat09
Member
9 years ago
Lisa @LMK74 it's tough news that you have just been told but thankfully the cancer is now out of you. With your treatment was the chemo done before surgery like mine because it was too large to operate?. I know it's really shitty knowing that the cancer was still there and thinking that chemo didn't work but maybe it did in the sense that they were able to operate. I have my surgery still to come after 6 months of chemo and 5 weeks of radiation but I look at it this way , when I was diagnosed in December it was inoperable due to the size, now I can have surgery.
Kat x
LMK74
Member
9 years ago
Thanks ladies, I'm mostly feeling pissed off that I was poisened for six months for nothing. Surely there is some way to tell if it's working or not.
MKitty68
Member
9 years ago
good news about surgery, shitty news about the chemo not working though, but great news only 2 nodes affected.
primek
Member
9 years ago
Glad surgery went well and so few nodes.
iserbrown
Member
9 years ago
Well that's not what you want to hear!! Here's to the next course that they set you on and know that we will be willing you along for a better result! Take care