Firstly Im really sorry for this long post.I met with my oncologist for the first time on Thursday and here is what I understand.The surgery I've had is left breast mastectomy + 10 lymph nodes taken. 1 lymph node tested positive.Type of cancer is:ER - positive intensity 3+PR - positive intensity 3+HER-2 negative Score 1+Below are the statistics based on the "f*%#$er NOT coming back within 10 years.Surgery (done) and walk away now with no further treatment (no hormone blockers) 83%.Surgery (done) and take hormone blockers (tamoxofin ?) 85%Surgery (done) chemo 4 cycles 3 weeks apart - docetaxel and cyclophosphamide, perhaps radiation for 5 weeks but definitely tamoxofin ? (not sure if I've spelt that right). 90%I know I'm not the only one but chemo frightens me it is my worst fear much bigger than my fear of spiders (and that's pretty big).For me loosing my breast was the easiest decision in this whole fecken nightmare. Is 7% really worth the side effects? Im totally spent I have been crying for 2 days now and not sleeping thus the other 4 attempts of trying to post this discussion.Never ever been so bloody scared in my entire life.

Purely on the statistical side, for me, when faced with the same decision as you now are, I looked at it from different angles. One of the scenarios for me was this. I was in a room with 1000 women who were told that they had been diagnosed with my type and grade of breast cancer. We were all told to have such and such surgery, which we did. We were then taken back to that same dreaded room and given a card with a number. Then 830 numbers were read out, and those women were allowed to leave the room and go next door for a celebratory cup of tea and slice of cake....considered cured (10 years). The other 170 shocked women looked at each other with dread. Just then the compere said...."Oh sorry, I forgot, I have another 70 numbers to draw, that is the women who had additional chemo, they can pick up their bags and join the others". If, perchance I was one of the 100 left behind to the future of stage four, would I wish that I might have been one of the other 70, or would I go "Que Sera Sera..." and accept it? For me the answer was "Fuck no" bring it all on, and if the wheels still fall off, at least I would have given it my best shot, and not have been left with the perhaps..." Each of us has to weigh it all up, make our decisions and then go forward. As Afraser says, having started chemo, you can always stop. But it doesn't work the other way. Best of luck.

The user and all related content has been deleted.

Chemo is the big bogey man. For some it's not so bad, for others it's not so good. 7% doesn't sound much but as my surgeon said every point or two counts if it's the one that makes the difference. And which point matters? Of course we don't know. If you can think about what scares you most about chemo, you may be able to get some information that will help you decide. I dreaded fatigue and chemo brain, didn't get either. I didn't like the idea of nausea/ vomiting and not being able to work. Never even felt like being sick and worked through treatment. I did get a heart irregularity (possibly partly attributable to age, eminently treatable and affects nothing - I work, travel, go to the gym etc) and peripheral neuropathy (improved but not gone but the impact is not significant). I am also five years post diagnosis and no evidence of disease. Sometimes it's not the things you worry about that are the things you have to cope with! Final thought - if the chemo side effects are too much, you can stop. No-one can actually hold you down and administer chemo against your will! You will have given it your best shot, which is as much as any of us can do. Best wishes whatever you decide.

@AllyJay great way to look at it. @Kerry66 My thought were I didn't want to have regrets of I wish I'd had the chemo 2 years down the track. It wasn't easy. But the medication resolved a lot of side effects and 12 months on I have a full head of hair and don't really remember much about the experience of chemo now. I'm alive. I choose to believe I am cancer free and have picked up my life again...but appreciate a lot more having that chance. Goodluck with your choice. But make the decision on your best chance not just fear of it. I don't believe the Shannon Doherty advertising of her chemo to have been helpful except for her supporters. For most ladies it is not like that at all. And I cried at diagnosis. After being told I needed chemo for sure and during it. But hell...I still did it. Some people get angry, I cry. Doesn't mean your not strong enough. Kath x

Hey Londog, I decided to have the chemo and started on the 13th January. I'm not gonna lie this has been the hardest thing I've been through and trust me like everyone I've had my fair share of tough times. My type of chemo was TC 4 cycles 3 weeks apart, the drugs were Docetaxel and Cyclophosphamide. I just finished in the 17th March. After Round 1 I ended up in Flinders Medical Centre as I had Febrile Neutropenia basically my body didn't start making white blood cells and I was ill. I had to stay 2 nights while they pumped me full of antibiotics. This DOES NOT HAPPEN TO EVERYONE - please understand this. Because I went neutropenic I was then given an injection the day after chemo for the next 3 rounds (i gave it to myself) and this did not happen again. As I went through the public system I was not offered the cold cap the public system do not offer them as yet. I have to be truthful here my hair did start to fall out exactly 14 days after my first round and I did come undone I cried buckets, however I contacted my hairdresser to have it shaved off as I knew I wouldn't be able to cope with it falling out. This was my effort in taking some control back. Round 2 wasn't as bad as Round 1 however rounds 3 and 4 hit me like a Mack Truck and I was pretty much bed ridden for the week after chemo. For me it was the taste - it was and is horrendous and because of the taste nausea, but they do give you nausea medication.For me I would start to come good around Day 10 after chemo.I'm not sure what is next for me - I meet with my oncologist on the 9th of April. I'm hoping I've done enough. 2 lots of surgery and chemo. I just want my life back. Feel free to ask me any questions I will try an answer as truthfully as I can. None of us want to be here but alas here we are!!! It is crap but I've also had some of my most positive experiences since diagnosis as well. All the best and take care. Kerry66Oh and I forgot to mention chemo brain - this is just a blast but it has made for some funny moments. You really just gotta laugh otherwise well crying was just to exhausting.

To chemo or not to chemo? | BCNA Online Network

28 Replies

kmakm
Member
8 years ago
@Kerry66 Ah! Finger crossed for us both.
Kerry66
Member
8 years ago
I’ve only just finished chemo so I have the peach fuzz atm
kmakm
Member
8 years ago
@Kerry66 Snap on the crown henna! And the year of birth if that's what the 66 is :)

Tell me, did your hair grow back as thick? Mine was thick. I've just finished chemo and am wondering how it will be when it returns. I suppose my chemo induced menopause will cause it thin somewhat. Sigh...
ThereseE
Member
8 years ago
Thanks Kerry66, I also have really thick hair and the feeling of it coming out is horrid. I’m muscling up the courage to have it off tomorrow ! X
Kerry66
Member
8 years ago
I was neutropenic after round 1 of TC and I was so ill. 2 night stay in hospital. In regards to when my hair fell out exactly 14 days after my first round. As soon as it started to fall out I rang my hair dresser and had it shaved off (number 1)
My Hair was thick and I had lots of it. I couldn’t stand the sensation of it falling out. I cried buckets the day of and the day after but then I accepted my newly bald head and had a henna tattoo done. It was my way of saying up yours BC.
Afraser
Member
8 years ago
Sorry you have been in hospital, that's not what you wanted. Can't advise on the neutropenia, but the sensitive scalp usually stops after the hair falls out. I didn't fancy shaving it when it felt so uncomfortable, so I just got it cut really short (No 3 clippers). That way my scalp wasn't hurt any more than necessary, and hairs that fell were really small and hard to see. I wore a sleep cap in bed to protect my sore scalp and hair collected in it overnight - easy to tip out in the morning!
Finch
Member
8 years ago
Sorry to hear you ended up back in hospital @ThereseE , you're a week ahead of me on the TC train so I'll be interested to hear the advice given to you. I've still got my hair, I keep looking at it, thinking surely not. It's been so itchy and tuggy. X
ThereseE
Member
8 years ago
Hello everyone, thanks for your stories and info. I’m learning a lot from you all and feel comforted by the community feel here. I also have just started 4 xTC and have round 2 next week. I ended up back in hospital on Easter Sunday with febrile neutropenia.. the Neulasta injections helped so much that my neutrophils jumped from .0002 to 15 - so now I’m neutrophillic ! Has anyone experienced this ? My hair has started thinning and coming out in small sections.. it’s the most distressing part of chemo for me, as prior to Easter I’d not had any real side effects. I’m thinking of having my hair shaved off as my scalp is really sensitive, but wondered whether doing this reduces the scalp sensitivity ? Appreciate your thoughts x
kmakm
Member
8 years ago
@jewel-ee Yes, it's the club to which none of us want to belong...
jewel-ee
Member
8 years ago
Thank you @Kiwi Angel, @Finch, and @kmakm for your warm and generous welcome!

Great to know that several of you have just begun the chemo trip and we will be forging ahead together :-) all the quicker to get to that finish line. Every time I get to end of one event another appears - wt??!! I'm vainly trying to learn the art of patience.....
So many firsts and unknowns: the first time out with drains, first time out with the 'knitted knockers" and I'm still learning how to position the damn soft form prosthesis so that there's some semblance of symmetry lol

Well done @kmakm for finishing - woohoo! and thanks for the heads up about TC chemo - i will do a search and learn much more.

I am very thankful that there are only 4 cycles and once I manage the first cycle I am sure I will feel much better - once more it is the unknowns.

I appreciate all of your generosity and warmth and even tho I would prefer not to be part of this group I couldn't imagine a better lot to be with!!!
Jewel

Forum Discussion

To chemo or not to chemo?

28 Replies

Recent Discussions

How soon after mastectomy can unusual scar be "tidied"

Predict - Breast Cancer app

What to expect - AC after Carbo/paclitaxel/pembro

Monash Health or Peter Mac

Microcalcification biopsy