Together we will beat cancer

Donate

Refuse chemo - idc stage 2 her2+ estrogen receptive

21 Oct 2019 16:53

I've posted a couple of times here since my diagnosis just under a month ago. 33, invasive ductal carcinoma stage 2, HER2+ and estrogen receptive.

 

I had lumpectomy just over a week ago where lump was successfully removed plus 4 lymph nodes which tested as clear and a further one which had miniscule cancer cells. I am recovering okay apart from what I have been told is pectoral muscle pain.

 

Mentally it is a different story, I am now on sleeping pills, anti depressants and diazepam. I am truly petrified of chemo which is the next stage of treatment they are recommending.

 

I am wondering if anyone in a similar boat has refused chemo. I am currently saying I won't have it as that's the only thing that's letting me sleep at night at all. I don't care about the radiotherapy or any subsequent hormone drugs, herceptin etc. I would even be happy to have a full mastectomy if need be. I just can't face the prospect of chemo, specifically hair loss. I'm young and vain and I refuse to look like a victim. I don't want to feel ill either, I have three kids under 4 and my mental state has already turned me into a ghost, without feeling ill on top of that.

 

I'm absolutely terrified of dying and it returning. Since the lumpectomy I'm confused if I even have cancer now?! 

 

Follow up appointment with surgeon is in a week and in my mind I can't agree to the next stage of treatment. My husband is furious but the more I read the more I'm doubting it's the best option for me or if it's needed. 

Refuse chemo - idc stage 2 her2+ estrogen receptive

22 Oct 2019 17:00 in response to bakervw

Hi

it's the waiting that drives you crazy 

I would only say don't be rushed 

ask all the questions they usually have a multi disapline team who look at all the results and advise you which treatment is best for you 

I had a weeks holiday before 100% deciding 

not that it helped much spent most of it crying 

only you can decide given all the information 

it's a lot to take in 

I hope you find you way through this stressful time and make the right choice for your circumstances 

xx

Refuse chemo - idc stage 2 her2+ estrogen receptive

22 Oct 2019 18:21 in response to bakervw

Hello love

totally understand, it will make a huge difference once you see the onco, they will put all your info in a predict site, and it will come up with the benefit percentages, but ultimately it's down to you. I'm also her2+ and the onco told me it's a particularly aggressive type, so basically I just wanted to throw everything at it...I had the chemo, I won't lie, it's no walk in the park but it is doable....I got through it, with total support from hubby and family....you put your life on hold.....yes, I went bald but now I have the thickest curls in the world! 

Rads is a doddle....and herceptin is the game changer....I'm on a trial and having 9 instead of 18 ...last one due next month.....

here if you need a chat....good luck xxx

Refuse chemo - idc stage 2 her2+ estrogen receptive

22 Oct 2019 22:32 in response to bakervw

Hi

I'm new on here and just saw your post, I was diagnosed in April this year after finding a lump and a few weeks later a golf ball size lump under my arm, after the biopsy was told it was grade 3 her2+ and that it is aggressive and that 8 lymph nodes were affected so they wanted to start straight away with chemo, thankfully I was able to start my first round the following week but blimey that week felt like a month, I was imagining all sorts, all I had in my head was aggressive and when will they do something, and after the first round I felt a huge relief and ready to fight the battle,  I had 4 rounds of thp (herceptin, pertuzumab, trastuzumab) and 3 of EC Chemo, my hair got thin, but I cut it short to get my two young children used to it, and used root touch up spray to help it look thicker I didn't need to shave it until the last round of chemo I was very lucky, I wear a Baker cap as I refused to wear a scarf. I was lucky with the symptoms of chemo I only felt nauseous and tired first few days felt like I needed to be in a quiet place, taste buds went in 2nd week and started feeling better almost normal!

I had a biopsy for research and found that I also have the BRCA1 gene so was advised to have a double mastectomy which I had last week, feel alot better than I thought I would. Soon to start radiotherapy for 3weeks. 

Sorry for the long story but I guess what I'm trying to say is, yes it is very scary I cried so much that first week and I was trying to hide it from my mum who was diagnosed with lung cancer in January, but when I had my mri scan after the first 3 sessions and they  told me it had significantly reduced it was worth it.

Only you can decide what you want to do, but stay positive and focused on kicking that cancer out. Be strong my lovely you can do this x

Refuse chemo - idc stage 2 her2+ estrogen receptive

22 Oct 2019 23:43 in response to bakervw

Hi

im in a similar boat, I’m 34 and been diagnosed with breast cancer. Have had my lumpectomy on the 3rd sept this year and had my oncologist appointment yesterday to talk chemo, it was recommended that I would benefit from chemo after my results were sent to America for oncotype. My cancer was stage 0/1 and grade 3. It hadn’t gone to lymph nodes. For to the aggressiveness and my age it was recommended I have it to reduce the chances of it returning. I’m petrified that it will however as much as I’m dreadingvyhe whole thing she said that it was basically insurance to eradicate and cancerous or ore cancerous cells that could be lurking in the body. This made me feel better knowing that if I have this down it will destroy anything else. 

Ive literally sent myself crazy too. It started off with headaches and even up to last week I had a lump in throat and finding it hard to swallow. My kinds been running overtime and constantly think it’s somewhere else.

Im currently on maternity with a 7 month old so feel like I’ve been robbed in a way of spending time with her.

Dreading the next 5 months but know it’s the best thing to give me a longer future. The thought of loosing my hair makes me cry everytime I think about it but there’s not much I can do and at least I’ll be here. 

You’ll have your ups and down days and you’ll come to a decision you’re happy with xx