Hi everyone
Hi,
I was just diagnosed with IBC 3 weeks ago which came as a bit of a shock to me as there is no breast cancer in my family.
I am 42 yo mum who is married and has already undergone 1 lot of chemo and is due for the next one next Friday.
I have just started to notice my hair is slowly coming out today this has come as a bit of shock didn't know or should I say hoping it wasn't going to happen so early.
I've joined this group not only for support but it feels good that I'm not the only one going through all this.
Comments
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Hi Tanya,
My name's Fleur and I was diagnosed about 3 1/2 months ago, I'm a mum of two and yes the hair thing is a shock! Mine came out two weeks to the day after first treatment, my hair was so thick so I got it cut short even then it was gone within the week. Of all the chemo I've had 5rounds now) my hair loss is the one thing I truly hate but knowing I have one more treatment and then it will grow back is making me happy. I hope your managing it all okay it took me a couple of weeks to adjust and now I see each chemo as one step closer to getting my life back. Sending hugs xxx0 -
Hi Tanya,
My name's Fleur and I was diagnosed about 3 1/2 months ago, I'm a mum of two and yes the hair thing is a shock! Mine came out two weeks to the day after first treatment, my hair was so thick so I got it cut short even then it was gone within the week. Of all the chemo I've had 5rounds now) my hair loss is the one thing I truly hate but knowing I have one more treatment and then it will grow back is making me happy. I hope your managing it all okay it took me a couple of weeks to adjust and now I see each chemo as one step closer to getting my life back. Sending hugs xxx0 -
Hi Tanya,
Welcome to this blog. I've not been long on it myself having been diagnosed last December and only in the last few months have I got up the courage to start blogging. But I must say its the best thing I have done for my 'journey'. I have gained so much from our pink sisters. When I first started seeing the words 'pink sisters' I thought it was a bit much but now I know how important those words are.
My hair started falling out two weeks after my first round and I hear (from our pink sisters) this is the expected time. Even though its awful at the time (I cried and cried) you do get used to it. Your family and friends will get used to it too. It amuses my husband having been bald for a lot of years (he thinks we are now twins) and he also thinks the peach fuzz on my head now is cute.
I will have the last of eight chemo cycles next Friday and I can't wait to say "it's over, yay". Though my journey continues with a mastectomy and reconstruction soon, I can honestly stay thank goodness the chemo is finished.
Whatever 'journey' this takes you on, concentrate on the positives and stay strong. Laugh a lot and be kind to yourself. This journey isn't funny but humour is really important to get you through.
I'm 54 years old but I still consider myself a young woman and I have a lot of living to do. And like you I want to live my life to the fullest.0 -
Hello Tanya,
I was diagnosed with IBC in late 2010 and I'm now NED (no evidence of disease). I was/still am a single mum with a 7yo daughter and my heald would spin with how I was going to manage everything alone, the hospital counsellor helped so much.
I never went the chemo, surgery, radiation route as I did not respond to the chemo. I went on to do curative radio and I've been clear since mid 2011.
An American IBC friend recently told me that when she asked her insurance if the would pay for her $150.00 wig, they declined but said that if she was depressed from loosing her hair they would pay for her therapy??? Therapy would cost more than the wig. Have to laugh at all the convolutions we go through fighting this disease.
I'd love to find out where you are in Australia, what hospital etc...I'm in NSW and attend RPA
Angela
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I too are brand new at all this, late May I got the call...at 43 and fit and active, you just don't expect it. I haven't seen the oncologist yet, as I've just had to have some more scans after the 2nd op, but I'm not too stressed yet. When the surgeon initially told me that I should have chemo, I was devastated....yes, I'm proud to admit...I'm slight vein and just the thought of hair loss and possible weight gain was not something that came easily (especially after busting my butt earlier in the year to lose 5kg).
But I've got over the vanity now and understand the bit that it's for the long term is far more important....I do want to see my girls marry and hound the crap out of any son in law, so well worth the short term inconvenience.
Being in Cairns, we can at least now have all the treatment here, where as only a couple of years ago it was off to Brisbane.
Good luck, I've already checked out wigs on line ready for the shedding. I tell the girls look at it on the bright side, I'll be able to do my hair for work the night before work and save heaps of time in the morning
Cheers
Sal
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Was just wondering what curative radio is? I've almost finished my chemo and then I have my mastectomy end of August followed by radio in sep. quite frankly at this stage I'll be wheeling myself into theatre to get my boob off, good riddance I say. Did they try the chemo and nothing happened? Fleur x0
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Yes being diagnosed does come as an awful shock. I am 47 and had always been healthy until this (diagnosed day after Mother's day this year).
You have done the right thing in joining this network. It does help so much to connect with others going through similar treatments and I have found it gives you the strength to face the tough times. Knowing so many others are going/have gone through this helps you to get through what you have to.
I have found that the treatment, I have had a mastectomy and will have 3rd Chemo next week, is going really quickly. There are some pretty awful times but I have been lucky to not have too bad a side effects so far. Losing your hair is sad but it is only temporary. The most important thing is to keep your focus on appreciating the times when you feel ok and know that you will get through this.
Wishing you all the best and hoping everything goes as smoothly as possible for you.
Deanne xxoo0 -
I was diagnosed with IBC in Sep 2010 at 46yo with one 5yo daughter in prep. Like you, no family history of breast cancer so a huge shock. I am now almost 3yrs down the track & so grateful to be 'in remission'. I did the 6 rounds of very tough chemo first & lost my hair after my first one. When you see those huge tuffs of hair floating down the plughole, it all becomes real. Wigs are so lifelike these days & it is great that private health (if you're in it) does cover some of the cost. Not sure if they still do it, but QLD cancer council also contributed some funds toward the wig cost. I also never got my periods again so essentially I went into menopause at this stage. This was good for me because my cancer's 'favourite food' was oestrogen. The chemo was tough but I visualised it as the soldiers running around my body & wiping out the cancer with their machine guns! I recently read an article about Anna Bligh, ex QLD premier who is currently undergoing treatment for lymphoma & she had a similar visualisation. Very powerful stuff.A few weeks rest before a double mastectomy even though my cancer was only in the left side. This was partly because I had huge breasts & it would have been ridiculous with nothing on one side & a size H on the other! I looked at them as traitors anyway & was pleased to see them go. Summer was always so uncomfortable with such large breasts. The other reason is that I believe, IBC can come back in the other breast so I was glad to be rid of them.Next was 6.5wks of radio which was easy after chemo & surgery. You just need to keep the Moo Goo cream up to help minimise the burns & bleeding. I was really lucky & didn' suffer from this too much.Now on Femara tablets for 5yrs to keep my oestrogen suppressed. There are a few different alternatives depending on where you're at with menopause etc. They all have various side effects but the way I look at it is, I'm still here, I'm pretty healthy & my daughter is now 8yo & in year 3. Sometimes, you just need to put up with the negatives of treatment to get your life back. After all, we all know IBC is life threatening & you're already Stage 3 on diagnosis.Another thing I found very powerful was repeating a positive affirmation to myself whenever I remembered. Mine is 'Let my lymph flow freely, let my treatment be kind & gentle to me & my cancer be gone forever!'I hope this helps. As you get further down the track, you stop thinking about cancer 24hrs a day, you stop looking over your shoulder at every little 'twang' that 'could be' a secondary and eventually it starts to become some nightmare that happened a long time ago.Yes, and make use of any support group you can find, IBC or regular breast cancer (if there is such a thing). I turned to this forum as I wasn't meeting anyone in my support groups with IBC & I wanted to see how others were going as there's so little information on the internet. My oncologist said to only read the .gov or .org sites as anyone can put anything on the internet which could be absolutely rubbish & worry you unnecessarily.Take care of yourself & let those who want to help you, help. I didn't keep it a secret (like some others I've met) even explaining what was happening to my 5yo & this worked best for me. People just want to help & don't know how to approach you. By not being afraid to talk about your breast cancer (& educate other women) the help just pours in.Terri (Brisbane)0
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Well done for getting onto the BCNA Website where you will be scooped up by lovely ladies who have been through your experience, and totally get it. The world of Breast Cancer is like suddenly moving to another planet, but as the Queen of hair-drama, and 20 years of hairdressing behind me, I really get your emotions with your hair. I have a picture I will put on here to give you an idea. I always had long hair too, and wasnt a massive fan of of grey hair. I hung onto my hair to the last minute. My Mum was the lucky one to shave it, on that morning I was feeling too sick to care. I recommend the cotton caps from the Cancer Council to collect the bristles. I bought a wig, but couldnt wear it for a long time because I had a scalp infection, which is rare Im told. Now my hair is growing back, its about 2 cms long, and clearly not the colour I wish it to be. I made a new friend on the last day of my Chemo, she is a hairdresser (I havent been for 5 years now), and we clicked. So soon I will be having a colour, so I can feel younger again! Also, my darling husband said, on the night we went out for dinner to celebrate end of treatments "I prefer you without the wig, you look like some-one else with it!" So what a change it has been since Nov 2012 !
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Fleur it was so good to hear from you. Getting my haircut tommorow real short, I also have long hair and I'm getting used to it coming out now but that first day was a bit of a shock. Did you exprience a burning feeling all over you scalp the first day it started coming out.
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Hi Janey235,
I was so happy you wrote back, blogging is new to me too, so glad that you've nearly finished your chemo I've just got the experiences from the first one. Felt pretty fatigued, had bad headaches, and 3 very restless nights with not much sleep. After 5 days of the first chemo I felt like my old self and everything felt normal again. Did your chemo get worse afte each one? You mentioned that I need to stay positive that's exactly how I feel and are still working full-time which keeps me motivated and around a lot of people who care, which feels great. About the laughing, my husband has been great he contiually cracks me up and keeps me laughing all the time, Without him and my son who's nearly 18 they make this journey much easier for me.
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Hi there Angela,
So good to hear of your story, and that you got through it. It made me even more determined to fight. I have a boy who's just about to turn 18 I can only imagine how hard it was for you to have such a daugher and having to go through all this by yourself. So when the chemo didn't work you said you had curative radio is this a kind of radiotherapy ? I live in Point Cook and are getting chemotheraphy at Footscray Hospital in Melbourne.
Tanya..
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The feeling I had wasn't exactly burning it was more a feeling of my hair being pulled and a tingling feeling. I kept grossing my sister out by showing her my new party trick. She's 40! And was like stop it stop it! Once you've had it cut tomorrow you'll feel soooo much better. I also went and bought a wig straight away while I still had a little left made me feel a bit better.xx0
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Hi Sal,
You sound so much like me. An active person who wonders how did this happen to me. Breast cancer was not in my family so when I woke up one morning to find my left breast double the size of my right I panicked called the doctor to make an appointment that night. I went to work that day and looked on the internet BIG MISTAKE. The symptoms I had were the same for premenopausal mastitis and inflammation breast cancer. The doctor put me on penicillin and then antibiotics and they did nothing then went to a breast surgeon and he quickly ran heaps of tests th following week. It wasn't till the following Thursday the 20th June that we were told the bad news I had IBC and it had moved to my lymph nodes under my arm and up to the clavicle region below the base of my neck .
You live in one of my favourite places in Australia you lucky thing, love Port Douglas also. I went to have my wig fitted and cut yesterday and feel pretty good about it. I'm getting my hair cut short tommorow hoping it will be easier to manage before I lose it all.
Take care Tanya..
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Thanks for writing back Deanne. How did you feel after having a mastectomy ? I've recieved so many messages of support and it's really helps knowing what other people go through also. Just yesterday I had my wig fitted and cut ready to be used when needed. But at the moment still have enough hair to get away with it.
You are so right about appreciating everything when you do feel great and all the best to you also with the 3rd chemo next wek I'm having my 2nd next Friday...
Tanya xxx
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