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

primek
Member
9 years ago
On taxol my hair started growing back on and I had long white hair on my face and neck wtf...definetly. I gained 23kg during treatment . I work in mental health and many of my clients lack the so called social etiquette. One said really loudly in a public waiting area..."what have you done to your hair! " in horrified tones (hatless...silver growth on show! ) and one other commented how fat I was. I did actually laugh at both as at least they treated me just like anyone else and not a cancer patient. I was well on recovery road at this stage though...if they'd said it during treatment I would have burst out crying as I was miserable...and did not work as not physically or mentally fit enough to do it. People constantly amaze me with what they say. Kath x
melclarity
Member
9 years ago
Lmk i lost every hair on my body even pubes haha I loved it! Im fair so not hairy at all. When i finished chemo i was walking through a carpark and it was windy...i kept brushing my face because it felt like something was on it!! Turns out it was the downing growing back hilarious! !! It settled down but i thought how amazing it was. Melinda
LMK74
Member
9 years ago
Lol Zoffiel, my eyebrows and lashes are thinning , certainly haven't lost all the pubes yet unfortunately. I've never had facial hair before but it's now pissing me off the feel of it and wondering if I'll look like a f###ing wolf to top it off. All I can think is it must be the oestrogen shut down maybe. The hot flushes are horrendous and I've got my fan running all night despite it being like 11 degrees overnight.
Zoffiel
Member
9 years ago
I don't know WTF @LMK74 , but that would have to be about the last straw.
Some of my hair kept growing, but thankfully not on my face. My eyelashes fell out 6 weeks after my last chemo and my pubes are (or are not) growing back in some sort of freaky reverse Brazillian where every thing is outside my panty line. See how I cleverly avoided the word bikini...
LMK74
Member
9 years ago
Has anyone else got facial hair growing while doing chemo. I've noticed everywhere, only light in color but i feel so gross because of it. WTF .
Zoffiel
Member
9 years ago
That sucks @Cassina ! Well meaning, my arse (as in let's not talk about the size of it)
Chemo has changed for the better in the last few decades but the assumption still seems to be that we will spend months lying in pools of spew while fading away to shadows of our former selves. That we're now stuffed full of steroids and drugs that make you feel like an inflatable mattress hasn't generally sunk in.
Putting on weight while going through all this shit is bad enough without being reminded of it. Humph!
Cassina
Member
9 years ago
A well meaning aboriginal friend of mine commented yesterday in a crowded room, Wow you are getting fat! I cannot explain how hurtful that comment was ( without I am sure any intent to be) damn chemo, it has reduced totally my self esteem
Dandelion
Member
9 years ago
@Cosette_BCNA, love the T shirt
Cassina
Member
9 years ago
Yes, I too am starting to feel like a zombie, getting fat, forgetful, cold and self conscious, night time is the worst, but each day the end of chemo gets closer, they tell you about side effects but not the grief and loss, and tearfulness. Only hair they say! but its the itching, and painful scalp that hurts, With the support on this site someone is always positive and we turn to others who have experienced the same, rather than those who say "you will get through this", yes but we can whinge a little to help us through!
Cassina
Member
9 years ago
yes indeed a roller coaster and wow you finished Chemo! impressive. I am week 5 then radio and our stories are similar,they found the more agressive cancer on surgery, I guess we are both lucky they found ours early, take it easy and good luck with the radio, my oncologist said any more than 15 days of radio is not worth the tiredness, wonder what yours says?

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