IBC in WA

Hello Hillburn,

Very best wishes with your treatment.  I was diagnosed with IBC in August, so just a month ahead of you.  I had chemo for 5 months and am about to have surgery.  

The internet site that was recommended to me, and that I found most helpful, was breastcancer.org.  It is an American site - and much of the best information is on international sites.

Kind regards, Kathryn

Hi

I was diagnosed in December 2008 - had chemo, mastectomy, lymph node removal, radium, herceptin, trial drugs but I am still here, yay!  Surprisingly, there is much more information available now than there was in 2008.  This was the year the first ever International Conference about IBC was held in America.  My Australian surgeon and oncologist had just returned from the conference, having been told that they may never see someone with IBC when I arrived!!

Whilst I read a lot of things about IBC and did research I just want to warn you that much of the information available is very depressing.  This is why I decided not to continue with my research.  I simply tell people to trust your instincts - do not rely on mammograms (I had only had one 8 weeks prior to diagnosis which was apparently perfectly clear) and make sure you insist on further tests if you feel something is not quite right.

Not many doctors know of IBC either, I am constantly 'educating' them about it too.

Good luck in your journey.  Make sure you have time for you - there will be plenty of time later to advocate for others.  This time now is yours.

Best wishes

Corinne

Good on you for educating people.   I do this everytime someone asks about my cancer, I slowly tell them about IBC and how rare and fast growing it is.

I'm sure that many people have now  got the message in lots of different circles of friends and now if one of their family gets symptoms they will be on to it quickly.  I've done my chemo, surgery and radiaton.  It's now 2.5 years after diagnosis.  I'm on Arimidex, and having treatment to control lymphadema,  having foot troubles from the chemo but Im grateful to still be here.

Wendy

Hi Wendy - sounds like you are managing the on going symptoms.  It is one of the things that I do say to people - the information about the damage of chemotherapy etc. was not fully provided to me before I started treatment  (I know BCNA has been looking into this).  Although I am obviously glad to be here - I now have a number of side effects from the tough treatment.  I am thinking this is why a number of people say they would need to seriously think about treatments if they needed any more in the future.

For me the biggest one is severe irritable bowel syndrome.  I am a teacher so I am guessing you could imagine how difficult this is for me.  There have been a few times I have come close to resigning from my much loved job.  I am currently seeing a new nutrionist who specialises in a new approach developed here in Australia (FODMAP diet).  Must admit it has improved some of my symptoms.

Lymphadema is not too bad for me except during the night and goes down before the morning.  I still have tingly numb feet and pains/cramps there as well.

Speak again soon.

Corinne

Hello Hillburn,

I hope you're coping well with the arduous treatment. Just do the best that you can - remember that you're NOT Superwoman - and, try really hard not to smack the next person who says "It's important to stay positive" ...fair in the gob :)

I agree with Kathryn888 in that the American site is a good place to start to find out practically anything you need to know about IBC. They are a much larger and well organised unit.

Having said that - I applaud you and WendyA for attempting to get as much information available to Aussies as we can. It was slim pickings when I first went to find out more (March 2010 - my first bout with IBC).

Try to remember that what is written about IBC - especially statistics - are just that - statistics. The references obtained by taking how long some women have survived, is obtained by considering all... ie some women have passed away earlier than others - some many, many years later. We don't know what stage they presented at, upon diagnosis.

There is one woman with the IBC group in the US who has just passed her 22nd year mark, I think - it may be one year more or less- her name is Virginia, she can clarify that.

As you are probably aware - IBC can and does behave differently to "normal" breast cancer.

After my treatment and mastectomy in 2010 - I made to 2yrs and 3weeks from the first diagnosis, when I saw the familiar pink rash on my remaining breast.

The 2 year mark is important, as 80% of recurrences will happen in the first 2 years - from diagnosis. Therefore you need to be reasonably vigilant with your own health. Attend the check-ups as your Dr's require. You will - like most of us - not be able to have a simple headache or ache or pain, without thinking "It's a metasasis" lol. Trust me... you do eventually - and sometimes you need to force yourself - learn the difference.

My cancer "had behaved bizarrlely" ( to use my Radiation Oncologists words) and re-presented in the other breast - not metasasising in any organs. Last year I went through chemo and surgery once more. All nodes (22) were clear and I again had a complete response to chemo. The Radiation Oncologist said there was not enough evidence to show that radiation would be of any benefit - and so we agreed (me rather happily) to forgoing it.

There are always advances being made in the field of cancer - especially IBC. Dr Cristofanilli being one, Dr Dennis Slamon (Herceptin) and many others.

We can thank God that we live in Australia, where we have such a good health system.

Lastly... try to keep your sense of humour intact!! ......personally - I'd like to know who thought of looking in the ovaries of the Chinese Hampster for a cure for IBC!!!

Love and Light to you - and us all..........

Hi Sandra

Many thanks for your comments.  Had the new Chemo today and still feeling fine (fingers crossed).  Sounds like we have a similiar diagnosis.  I am so pleased to hear you are in remission, what a strong woman you must be.  I have all the info now and had more questions for my Oncologist today.  So NO fears, all positive and looking to the future.  I understand there will be set backs but I have so many wonderful things and people in my life my intention is to give it my all and like you be in remission.  I also wish everyone peace, love, and there is always hope, be strong, be positive.  I met a wonderul couple  during my first " chemo experience" in the Chemo ward.  They have been going through all of this for 24 years, she has had some recent bad news but what an ispirational person to the new comer.   She is fighting hard and has been very lucky to have a good husband who has made her journey - his.

To those of you who are struggling I extend my hand and walk with me, I have strength for two.  Help to educate all those you come into contact with IBC , to give encouragement to those who need it as Sandra 53 has to me, so thank you once again.  Cheers until next time.  Hillburn.

Hello, hope your treatment goes well for you!!
I was diagnosed with stage 4 metastatic IBC in may 2005. Given 2yrs to live, 6 rounds of 3 types of chemo, followed by 35 days of radiation. I am on aremidex, still have my check ups every 6 months at RPH. No ops for me as my cancer had gone to my blood and bones.
But by the grace of God I am still here. It's keeping the drs guessing and scratching their heads!!

So look after yourself both in body and spirit, keep your sense of humour and laugh lots.
Prayers and blessings
Lyn