Forum Discussion
K_J_
10 years agoMember
Step 3 (part 2)
The problem with compartmentalising this "adventure" is that your aren't really prepared for the bumps along the way.
After a relatively short wait, my surgeon called me today with pathology results from Tuesday's surgery. For those not following- I had wide excision lumpectomy with sentinel node biopsy 4 days ago. My surgeon and I were very optimistic as the tumour was only measuring 12mm and so for all intents we had anticipated a Stage 1/Clear node/no hormone receptors outcome. I had surgery and knew that I would have radiotherapy. I told my employer that I would be back to work this coming Wednesday.
My husband and I had chosen to acknowledge the known and work with that information. We didn't want to fall into the trap of fatalism and start planning around things that were, in our opinion, unlikely to ever be relevant to us.
Wrong.
Oh my god sooooo wrong. Apparently my tumour has ninja skills and in spite of measuring pea-sized in two separate ultrasounds, that little trickster is pushing out at 40mm. So yeah, that means stage 2. Not impressed. And then of course the naughty node had to get in on the action too. Hormone receptors? Sure, I'll take both!
Needless to say, instead of my glorious return to work I'm planning a mastectomy. And axilliary clearance. And chemotherapy. Far out, this was NOT the plan.
I could probably process all of this if I didn't have a 7 year old and a 10 year old daughter that I now have to tell.
Merry Christmas.
18 Replies
Hey Alsopt. Sounds like our journey is almost identical. I'm headed for my first AC chemo in mid-Jan, post mastectomy, expander and auxiliary clearance surgeries one side, reduction on the other. Just waiting for dates now. Did you do the scalp cooling? I'm going to give it a go, but can't say I'm thrilled about the chemo at all, as I wasn't prepared for it. At every step there's been a downturn. I feel like I'm on an emotional rollercoaster. I seem fine for days then just plummet into tiredness and tears. SO not what I'm like normally and I HATE that! XO
- K_J_Member
Hi Ruth, welcome to the club! This forum has been such a beneficial experience for me - somewhere to vent and really honestly express all the weird emotions that come with this 'life diversion'. The support you will find here is amazing, and it's a safe place where expressing your feelings isn't met with fear and guilt!
I was pretty lucky to get my pathology very quickly. Whilst the outcome may not have been what I had planned, it meant I felt like I had some control in being able to make decisions without hesitation.
I had my mastectomy an a/c less than 24 hours ago and aside from some obvious discomfort, I feel good.
I am thinking of you and wishing you fast and non-shocking results!
Stay strong and fight like a girl ??
- Ruth_BirdMember
Hi KJ
Thanks so much for sharing your story.
This is my first day on this forum. I was diagnosed 2 days after you and am waiting on my WLE + node biopsy results from surgery 2 days ago. While rattled by your last post about the surprise finding with your ninja, have greatly appreciated reading your experience and your honesty.
You can do this.
From snooping around various posts and replies, this seems to be an incredible forum and no doubt you will have great support from people who have had similar experiences.
All the best,
Ruth
- HITMember
Sorry to hear of your results, but you are in the right place here. My sizes too were way under - seems common!!! I didn't join this site until after treatment and regret it. So much real advice from real people - I feel it rivals nurses / doctors. When first diagnosed everyone said to ask questions, but you have to have some knowledge to know what questions to ask. I was so cancer dumb. The booklet was good too, but very general. Kids are tougher than we think - and there is a lot of help/info out there with ways to cope. Chemo sux, but it ends. Radio - not pleasant but okay. Sending you a hug
Pam
- NeMember
I read your post and it pretty much feels like I am reading about my own experience. Mine too was bigger than expected and every time I thought ok, I can do this, they told me more and more unexpected news. Also ended up with mastectomy after a stage 2 diagnosis, 3 tumors, biggest one 3.4cm and hormone positive. Then the news 2 from 4 lymphnodes involved so had to go back to have auxiliary clearance. Chemo followed, hospitalisation due to severe side affects, and finally after 6 months, radiotherapy (was the easiest part).
I have just returned to work after taking 8 months off (which was the best thing ever, I honestly dont know how people work while going through treatment). My hair has started growing back and I was just trying to get used to my new regime of hormonal treatment and the side effects of the medicine and new found menopause when I got dealt a new challenge. My gene test that I have done after treatment ended came back positive for the BRCA2 (breast/ovarian cancer gene mutation)......sigh!!
I'll meet the Gynae Oncologist this week to discuss my surgery to remove my ovaries (I am not keeping those suckers!) And February 2016 will see me having another mastectomy of the remaining healthy breast.
I completely get your frustration and fear. Forgive the long story, but you will get through this. One day at a time, you'll put everything else on the virtual shelve and just focus on one task at a time. We are all here for you for support and you will definitely read other posts that will encourage you to stay strong and keep going. Some of your friends/family/colleagues with great intentions will probably drive you mad at some stage with stuff they say (to supposedly make you feel better), so feel free to come and let it all out here where we all get it and where you will feel understood.
Take thinks easy and don't feel pressured to explain everything to everyone who ask you how you are as this becomes overwhelming at some point. Maybe get a fb page where you can keep people updated and encourage them to write messages of support on there so you can read and respond in your own time.
Also many people go through chemo with little hassle and usually only have a few days they feel unwell and then many they feel pretty ok.
Chin up, you've got this!
Virtual hug, Rene
- K_J_Member
Thanks Tonya. I now have you on my list of fellow mastectomy victims ??
- AlsoptMember
Xxx yep way too many of us hope you are doing a tad better today I forgot to say when I was first diagnosed I called cancer council and was put into a phone buddy system I had a lovely lady call me weekly whom had gone through the same you only get 6 or so calls but that really helped me especially through all the questions our last call was after my 2nd chemo we had lots of laughs and a few cries on my end xxx
- TonyaMMember
Hi K J, sorry to hear your news- goal posts got shifted on you big time! This is the nature of this crap journey and it's hard to plan your life in and around treatments.I've done the journey twice- 2003 and again in 2010- lucky me! I'm fine now and finished my' Tamoxifen tour of duty' only to be told I really should take it for another 5 yrs- well you can forget that,Im done!!! A mastectomy has it's issues so just blog back if you have any questions. Best wishes and big hug. Tonya xx
- K_J_Member
Thanks for your kind words, yes it's pretty sucky but I can't change it. The support I'm receiving from this site is amazing. But at the same time incredibly sad - how can there be so many of us??? It's disgusting. But also inspiring... I read things every day about women just like me who find it in themselves to fight and fight and it gives me confidence that I can too.
Sending you love xoxo
- K_J_Member
Oh my god, you are so right - about everything! It is the most surreal feeling. I'm in more shock now than initial diagnosis. I think that shit just got real.
No choice means no thinking; kids mean positive focus.
I'm doing mastectomy first - meet with my surgeon on Tuesday to book for that. Then chemo and Tamoxifen. My surgeon is waiting on radiotherapy oncology consultation to decide whether or not to do radiation on my chest wall too.
How long did you do chemo? How crappy was it? Did your eyelashes fall out?? I'm starting to compile my extensive question list!
I genuinely appreciate you taking the time to reply to my post. I'm wishing you a speedy recovery from surgery and many arse-kicking years ahead ??