First visit to Breast Cancer Clinic, after small red spot on nipple. Surgeon no 100% not cancer, we do not know what that is, never seen anything like it before? Come back in 6 weeks and if it is still there we will do a biopsy.Guess what? you have cancer, told by the brand new intern on his first day, after a 5 hour wait ......reminder him I was a nurse and on staff, so he said I will call the Surgeon. Surgery done, and oh we found another breast cancer, the aggressive one, so need to go back to surgery again this week. More 5 hour waits, and we got it all, no need for chemo, too small, radio now, then keep an eye on it! All good, see the Oncologist anyway just to get his opinion.... no need for chemo, may not help, all good, comes back 5 mins later, well lets try small dose to stop any cancer returning! You will not loose your hair and you are better to keep working! Monday working feeling great after first dose, no issues, Today Friday bald, in pain and every symptom waiting to go for weekly chemo, too sick to work, everyone knows I have cancer and chemo, yes I will get through this, no I am not angry, but once the world knows I find nurses praying for me, everyone has advice re diet, work, hair, well meaning but never thought the journey would be so up and down and never though hair loss would be so depressing and signalling to the world You have cancer, you are now a patient and we feel sorry for you! I can cope with the long term outcome but wonder if anyone else has had a confusing journey?

@"not keen on chemo" I am really sorry to hear your confusing journey! We are riding on a very bumpy roller coaster. I was diagnosed late last year from the day I felt a lump to now, it's been almost 5 months. I am still on the roller coaster and waiting for the big scary turn, hopefully after that I will be heading towards the end of the journey. I had lumpectomy removed 2 lumps soon I was diagnosed late last year. I was offered radiotherapy or single mastectomy based on my post op histology reports. I struggled to make decisions. I was referred to genetic testing and MRI as I was worried about my opposite breast. MRI found another lesion in my opposite breast and radiologists commented my breast were"nightmares ". I am booked for double mastectomy next Friday. I am a nurse as well. It's certainly feeling weird being a patient now. I had nipple delay procedure done yesterday. I had the nurse who looked after me when I had lumpectomy. She said she will request to look after me next Friday after my double mastectomy. A very kind nurse! All the best with your journey! Gentle hugs for you! xxx

@"not keen on chemo" Welcome!! I think there are plenty of people here with plenty of confusing stories yes!! My first diagnosis was 2011 and 2nd in 2015. I think ive seen it all in that time. One thing I learned was having had lumpectomies, biopsies, sentinel node biopsies, radiation and chemo is...I wouldnt do a biopsy again as every time I had one they were benign! so pain and suffering for nothing. Lumpectomy was the only way of getting definitive pathology for diagnosis. Its so hard then too when you get conflicting opinions on treatment, so its important to deal with just the Oncologist. I find it odd about the Chemo, he said you wont lose your hair? and you could work? what is your Regime? If you did just Taxol theres a good chance you may not lose your hair however on FEC or AC you absolutely would. I too found it confronting that part but had a great wig that nobody could tell. I was very ill on Chemo and could not work. Im now 16 months post and still suffering side effects, but I have a full head of hair and on my way LOL. I wore wigs for that reason, I so didnt want the attention (pity) from people, I just wanted to deal with it personally. hard to hide when I lost eyelashes and all hair all over my body, I really did look like that typical cancer patient and HATED it! I would ask a heap of questions so you can be ahead of what is going on and going to happen so that you will be able to cope a little better. People think they are helping and being well meaning, but they really aren't nobody gets it like we all do because we're all going through it. Its an amazing supportive community and a wealth of experience and knowledge and love!Keep talking, and sing out if there's anything that doesn't make sense that we can help with. Hugs Melinda xo

Hi! Sorry you've had to join us but we are all in this together and between us we will help you through the doldrums of it all. I can only imagine having a nursing background sets your mind off racing, information overload! Hopefully you've been through the formalities on this site and ordered your My Journey Kit and have a breast care nurse as your go to. There are other resources that are there for you to take advantage of, Look Good, Feel Better https://lgfb.org.au/ and the Otis Foundation. There are lots of posts and resources within this site that you will find helpful.As you would be well aware through nursing others we are all different in the way our bodies react to treatment. Wishing you well with your treatment and surgeries and hopefully it is not too bad!Take care

@"not keen on chemo". Half the problem is not being able to effectively hide what is going on. This disease is no more deadly than heart disease, but we can't disguise it. Which somehow makes us public property. Very annoying.

@ not keen on chemo what a rollercoaster. One day you are happily working the next day you have cancer. Your fine and then you are not. I think how are you supposed to trust your body ever again. No obvious symptons nothing. I tried to tell as few people as possible I had cancer. Suddenly I am treated differently. Same no hair sick limited in activity. Guess what a year on have hair, no cancer in my body and activity levels rising. It will get better.

breast cancer roller coaster | BCNA Online Network

48 Replies

Hopes_and_Dream
Member
9 years ago
Well said @socoda!!
socoda
Member
9 years ago
Doesn't give anybody the right to be gung-ho, mouth-flapping, down right obnoxiously tactless and rude. If anyone is that insensitive tell them that at least you can do something about the condition (lack of hair, weight, etc etc) they unfortunately have no hope in hell of having a personality transplant!!! (@#$%@%^!'s) - sorry if I put down the words I actually think of these people I would be banned!
Cassina
Member
9 years ago
Rapunzel, thanks yes I have been open, however now I am over it! I agree it seems to be their way of not coping and fear it could be them next
Rapunzel
Member
9 years ago
I actually went through a few days of feeling that I just didn't want to be labelled as Cancer Chick.... so, @Cassina I get it. At it's worst if felt like I had a whopping big sign over my head saying "Cancer!!! Beware!!! Treat with kid gloves!!!!". I can laugh about it today, might not be able to laugh tomorrow. Sending hugs your way and the only practical thing I can suggest is that you try being as open with everyone as you can. They need to find a way to cope too. I hope the one who said you were fat is feeling a bit mortified, it's very easy to be unthinking and blurt out all sorts of rubbish but that was pretty bad.
primek
Member
9 years ago
My long white facial hair and neck hair seems to have settled. Now though I have heavier darker lip hair so have learned to wax. I just keep thinking...ffs what next?. (Eyebrow hair grown back in weird areas also...such is life) Not to mention white pubic hair to start with...now grey and much less...possibly aramatose inhibitor contributing.
Annedipa
Member
9 years ago
@Zoffiel absolutley! Thoughtless fools indeed...and i dont think anyone has the right to use your story without your prior knowledge.
Annedipa
Member
9 years ago
@socoda great idea!
Zoffiel
Member
9 years ago
My lecturer today chose to use my circumstances as an example of how leaders are resilient and able to function through adversity. One one hand, I can see his point, the other hand squealed and thought 'How dare you assume you know what drives me.'
This is my second trip on the cancer train and it is the second time I have decided to not hide myself; it's interesting how that seems to signal that my story is now public property. I can be the exclamation mark on someone else's conversation ( I stole that quote, but can't remember who from)
We are tougher than they can imagine and there are more important things to worry about than thoughtless fools.
Cassina
Member
9 years ago
I think they think, this will not happen to me! and do not realize the impact it has on our already fragile self esteem,
LMK74
Member
9 years ago
Wtf is with people being so down right rude.

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breast cancer roller coaster

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