Scared !!!

Hey, five months in from my diagnosis, I so know just how you feel. Shock, gut wrenching fear, shock, did I mention shock?!

Really sorry to hear you've had this crap card dealt...but on the good news front, a stage 1 diagnosis is as a good as it gets -- well apart from the no cancer at all of course!

What treatment you will need will depend on all sorts of things -- the size, whether it is hormone receptive, whether it is HER2 positive or negative, whether you have a mastectomy or a lumpectomy.

Happy to hold your hand through this as much as I can, but do you have any other information on what they've identified at this stage? Do you know what the results of the biopsy found (this usually tells you the hormone status though it is subject to confirmation once surgery pathology is done).

That you've found your way here is a fantastic first step. If you doctor has not given you one yet, the next great thing to do is register to obtain a my journey kit from this fantastic BCNA site (if you do a search for my journey kit in the search area at the top right hand side of the page it will take you to the link). It is full of really useful information that I clung to, patricularly in the first three weeks post diagnosis when shock was the a constant, and it really helped to calm me down.

Breathe. Breathe. You have to try to breathe. 

Hugs.

x

It's wonderful you have ana amazing husband at your side, and little people to love and live for.

Usually with a mastectomy there is no radiation.

Until the pathology of the tumours is known, they can't work out a treatment plan (as this works out what is best for you, if you need hormone therapy and some chemo just to zap any stray cells that might be out there, or just hormone therapy, or perhaps surgery only). I know it's hard, but baby steps. Try to leave that to the side for now, and focus on getting ready for surgery. Do you have a date for this yet?

Happy to report recovery from this was swift, and you have youth on your side which will help with this too :-).

Major cancer cetnres all have an oncology counsellor and I think it's really important that you contact the centre/hospital taking care of you and make an appointment to see someone as soon as possible. Tears are normal -- cry all you wish and need to -- but it might help you to deal with things a little better, be a little easier for you, if you talk to a professional who can guide you through all.

My approach to my diagnosis was this: shock. shock. fear. gut wrenching fear. shock. Once the diagnosis was confifmed (a messy week long process I won't bore you with here) I was really happy that it had been found early (and I'm stage 2, later than you), I felt like I'd won Lotto that it appeared not have been in my lymph nodes (confirmed during testing in surgery), and I took the veiw that I had to think of it as mastectomy would physically remove the cancer, chemo would zap any stray cells and the hormone therapy to beat my oestregen levels into submission I will start in about 6 weeks, would keep the bastard at bay.

I'm not saying I always think like this, but for the most part, five months post diagnosis, that is how I think.

It is a very very personal thing for each of us. We all handle these sorts of things differently, but all I can say is thatit will get easier once the shock passes and you havea treatment plan in hand.

Speakingof which, I write to you day 8 after my third round of chemo (only one to go, woot, woot), and must dash as work beckons!

Be gentle on yourself.

x

You worry about if you will die from this, which is beyond understandable, but your Mum went through this and is still with you, isn't she :-).

Hi,

Feeling for you,  having been diagnosed 6 months ago.  For me the unknown was the scariest thing of all.  Once I had met with my team and knew my staging and the plan, I started focusing on each step and not looking any further than that.

i am stage 2, with 5 nodes involved.  Had an axillary clearance and lumpectomy, which ended up not having clear margins , so a partial mastectomy was performed.  I have just finished 6 cycles of chemo and thankfully had minimal side effects.  I start rad on Monday (30 days!) and will begin hormone therapy.

Def get the BCNA kit, helped me alot to in the first few weeks of diagonisis. When you go for your appointments, take a pen and p

Hun, take each day as it comes, let the tears flow (better out than in) and be kind to yourself. 

Focus on surgery and getting over that.

Sending massive hugs to you and know I'm thinking of you and here for you anytime.

xxxxxxxxxx

Hi,  I'm sorry to hear about your diagnosis.  I was diagnosed in October last year with a very large area of DCIS in my right breast.  I had a mastectomy and at the same time a sentinel node biopsy which actually found Grade 4 in my lymph nodes.  I went back in for a second op and had a left mastectomy (to be absolutely sure) and a right axillary clearance.  Scary yes... but a lot less scary than thinking it may not have been found.  I am extremely grateful I am still here to tell the tale and see my daughter grow up.

From my understanding you have chemo if they find invasive cancer cells.  You have radiotherapy if they find more than three lymph nodes that have cancer in them.

I am having both chemo and radiotherapy at exactly the same time.  I am almost at the end of the radiotherapy  and hopefully starting my second course of chemo today.

The radiotherapy is all very easy - just like an xray - just a pain having to go to the hospital every day Monday to Friday.

The chemo is also really quite easy although has more side effects.  I have nearly lost all my hair and have had some nausea, but that's all for now.  I think the symptoms might get worse as you go on.  We'll see.

Don't worry too much.  Look towards the positives.  They have found the cancer and they are treating it.  It's also Grade 1 which is great news.  It hasn't developed too far.

Which hospital are you going to?  I'm being treated at Sir Charles Gairdner.  They have been fantastic. 

Good luck with your journey! x

I was diagnosed in September last year and my initial reaction was how to explain to my husband and two adult sons that I had breast cancer but that it was all going to be ok due to early detection.  The fact that I had worked a stint in the Breastscreen Perth office a number of years ago meant that I was comfortable with the knowledge I had gained on the subject and also with the expertise of the medical fraternity who would be involved in my "journey".  I decided to completely avoid the temptation of surfing the net on the subject and to be honest I haven't even bothered to read much of the material supplied to me thus far.  In other words, I am just going with the flow!

To this point in time I have had two breast conserving surgeries with the second involving sentinel node biopsy during the procedure which showed no spread.  My specialist decided I should start on a course of Tamoxifen to put balance into my hormone situation and this I commenced two months ago.  Apart from the odd hot flush side effect I have had absolutely no problems with taking it.  In fact I believe that it has worked so well that I am no longer experiencing migraines which I now believe were related to menopausal hormone issues.  I have now commenced a 6 week course of radiation therapy and apart from the inconvenience of travelling back and forward to the treatments I am feeling great.  I go to the Perth Radiation Oncology facility in Wembley for my treatment and because it is for private patients I find that my appointments are on time and I am in and out within half an hour.  The staff there are wonderful.

I've experienced many emotions in my journey so far including fear, severe anxiety and even anger but what helps me is to keep busy and make sure to catch up with friends for a coffee and chat and spoil yourself every once in awhile.

Sending lots of good vibes your way!

Vicki

Hi Tan!

It really can be a bit scary when you get such upsetting news, but the supportive gals here at BCNA are SO amazing - Being able to hear everyone else's stories, both sad and funny, definitely help make it a bit easier... You're far from alone in all of this, and it sounds like you have a strong and supportive network of people around you which will help so much too!

It's going to be scary, sure, but if you're strong and you have people who love you by your side, you're going to pull through and come out the other side of this... Catching it so early means you get the very best results, which is definitely a huge positive, and knowing people in your family have done exactly the same thing means you have people who know you, and how you feel, and what to do to make you feel better as best they can.

Please keep us updated on your progress, we'll all be thinking about you and if there is anything we can help with - we're always happy to do so. Be sure to ask your doctor anything you might be worried about too, they are the professionals and I am sure they would welcome the questions - every bit that helps put your mind at ease is a little bit more time where you can rest and not worry. :)

*HUG HUG HUG* Be brave and strong, you definitely have it in you! :)
Tim

I am not sure, I think it really depends on what they remove and what shows up in the months after... Most people seem to go for a mascectomy, as it's a more surefire way of removing everything! I think it can be different for each person, but reading the stories above they all have similarities, so no matter what you go through there is someone who has hopped through it all before and will be more than happy to tell you the best and worst parts, so you're as prepared as one can be. :)

If you do have treatment you should be pretty okay! I meet lots and lots of people who are going through treatment all the time and people are generally bubbly and happy and actually getting on with things... It's not like when one of us guys have the flu and we have to take a month off work, and complain... You girls have more strength and determination and fight a lot harder :)

If you do happen to have to deal with hair loss, please ask me anything you need to know. I can take awesome care of you, help you find the right replacement, answer any questions about your situation - Happy to do my bit to help make your epic battle as easy as it can be!

Number one rule is to look after yourself. Ask questions and don't be afraid to speak out. Trust your doctors. I was diagnosed late August. Grade 3 triple negative. Had mastectomy then 6 rounds of chemo and now halfway through 5 weeks of radiation. I have found that I am tougher than I thought I was. Yes the chemo was yucky and yes I lost my hair BUT I am here and at the end if the day it was all worth it. Lean on your family and friends if you have to and don't take on too much. Listen to your body. It will tell you what it needs. We are all here for you anytime you need us. Remember this. And take care x x x

What has your surgeon said? When is your surgery and where are you having it? X

If you need more support than we can give you, I would suggest using some of these links. They will have more facts to help you. We can only give you our experience.

<a href="http://www.cancerwa.asn.au/patients/support-and-services/cancer-counselling/" title="http://www.cancerwa.asn.au/patients/support-and-services/cancer-counselling/">http://www.cancerwa.asn.au/patients/support-and-services/cancer-counsell...</a>

Remember to remain positive, be a strong role model for your children and husband. They will also be learning life lessons through this journey. My daughter has taken everything in her stride... Just like me. They love you because of who you are and that hasn't changed.

Xxx

Hi again everyone.

Happy to report that I am feeling good today, ready to tackle this thing head on. I know that Im going to be okay, just have to tackle the journey as well as i can.

I think the initial shock just takes a few days to go away or settle down. But now I'm ready for whatever life throws at me.

I have an appt with my surgeon on Wed next week, Ill know more then i guess. I am in country W.A. Im guessing most of you are in Perth?  I think Im coming to Perth for my surgery as if Radiation is needed I will have to come to Perth for that too.

My children are 6 & 9.....Does anyone have any advice for what I should be telling them.  My daughter is 9, and very switched on, they have already sensed that something isnt right, I just dont know how much to tell them..

xx

Glad to hear you've turned the corner and feel better about getting ready to tackle this. :-). Because you will. And you will surprise yourself how well you'll do.

I can't really advise you on what to tell your children, as I don't have any unfortunately, but for what it's worth, I would perhaps wait until after you meet with your surgeon, have all the information you need, know what's ahead for you with treatment Iif anything beyond surgey), and then you can look them them in the eye, tell them what you need to and be able to answer the questions they have.

I know chemotherapy has been a big concern for you, but it is not very common for this to be needed when BC is diagnosed at stage 1. Similarly radiation is not usual with a mastectomy unless more than three lymph nodes are involved, which is unlikely to be the case with a stage 1 diagnosis.

Did they give you any more information about the type? They have definitely caught it early and that is something to celebrate when the fear hits, ok? 

Hope you have something lovely planned with your family for the weekend.

x

Glad to hear today is a good day!

I have a 13 and 9 year old.  We sat both kids down and told them I had Breast Cancer and what that meant.   We told them I would need surgery, chemo and then radiation.  My hubby and I then briefly explained what each of these meant and how it would impact on me.

We spent a fair bit of time crying, hugging and it eventually turned to laughter.  We have always been honest with our kids (9 year old has had his fair share of medical problems from birth)  9 year old asked "would i walk funny with one boob"  LOL

You will find the right words when you sit down with them.  

Thinking of you and wishing you a peaceful weekend xx

Hi,

Just read your post regarding telling your children. I was diagnosed with breast cancer at age 36 almost 18 months ago and struggled with what to tell my children who were 5, 8 & 10. It was early breast cancer so I didn't have to have chemo but did have radiation so my talk with them was a little different as my hair didn't fall out so I wasn't going to look any different (from the outside!). I spoke with them after the surgery once I knew what we were dealing with. My biggest piece of advice would be to tell the kids that they will probably have other kids telling them about it and saying stuff to them which may not be true (which happened to my kids) but because we told them early and advised that just because I have breast cancer doesn't mean that I'm going to die and not everyone that is diagnosed with breast cancer will die from it. This helped as over time some kids at school were trying to tell them that I had cancer and I was going to die but my kids said "No that's not right." This made me feel much better that they weren't caught offguard with what these kids said. I asked them if they had any questions and then answered them. I made our talk short and to the point with the facts which my kids seemed to respond to. You can only do what is right for you and you know your kids. You know what they can handle. Trust your gut. Good luck with everything. xx

So...its 3:27AM !!!  Cant sleep so im in the louneroom with the laptop, dont suppose anyone else is as mad as me and wants to chat right now.

Today my surgeon appt is at 11am, so many thins racing through my mind, so many things i want to ask him, in fact i just want him to book me in for surgery ASAP !!  Have to have my right breast off cos I have mulitfocal so Im telling him to take the left one too.

Anyone have any advice about tissue expanders?  Should I have immediate reconstruction if possible or should i wait?

What do i pack to take to hospital, will i need bloused with button fronts, loose tops? Leggings?

xx

Thinking of you today!

x

Saw the resident surgeon here today.

Referring me to Perth, so Im off to Perth tomorrow on Skywest for an appt with the Breast Surgeon and Plastic Surgeon.  Having bilateral Mastectomy with expanders.

Surgery booked for 19th March, was hoping for sooner but thats the best they can do.

Anyone want to tell me anything about expanders.

xx

oh Tan :(  What happened??

oops (hit enter before I had finished)

I also go to the Mount. I see Richard Martin - surgeon and Prof Arlene Chan - Oncologist.

.

Heard good things about Peter (he's married Arlene)  You are in good hands hun.

Will be thinking of you x

Arlene Chan ??  Wow, thats made me happy, thank-you

x

*married to

Yep, Arlene is amazing, straight to the point and very thorough.

x

I had Peter Willsher (Arlene's husband) and Arlene Chan at the Mount and my plastic surgeon for the reconstruction was Tony Connell (amazing man!!). They are a wonderful team so if you've got any of them, you will be in very good hands!!  I actually went to see Arlene yesterday for my annual check-up :)

I have had breast cancer twice - firstly at age 35 (mastectomy and TRAM flap reconstruction) and then again at age 42 (mastectomy, immediate lat dorsi with expander reconstruction, chemo x 4).  What do you want to know about the expander surgery?  I had very little pain, if that is any help! And the result was great :)

When I had breast cancer the first time, my kids were only little (6 & 8) and I just told them that I had to go into hospital for an operation on my boobie.  They didn't really want any more info and were happy to just give me hugs.  I stayed VERY positive through the whole process though and definitely put on a brave face for them.  It helped them cope with the whole journey very easily (and my husband too!).  The second time, they were older and I told them that I had breast cancer and that I would probably need chemo and lose my hair.  They were a bit clingy during this time but still coped really well because I was so positive that I was going to beat this thing.  I truly believe that a positive attitude not only makes the people around you feel better about what is going on but also helps you heal and feel better more quickly too.

Feel free to ask any questions,

Louise