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All TopicsForum: Australians and New Zealanders Affected by Breast Cancer → Topic: Australian Sisters

Topic: Australian Sisters

Forum: Australians and New Zealanders Affected by Breast Cancer —

Australian health care, clinical trials, and life in general in the land down under.

Posted on: Dec 15, 2010 11:13AM

Trisha-Anne wrote:

Calling all Australian Sisters!

I'm in Canberra and have just done my second chemo treatment.  I'm have 3 cycles of FEC then will have 3 cycles of Taxotere and 12 months of Hercepten.

It might be nice to see how many of us are in Oz and if we aren't too far away from eachother try to organise a meeting.

I have made a long journey and been to a strange land and I've seen the dark man very close ... Thomas Wolfe Dx 9/17/2010, ILC, <1cm, Grade 1, ER+/PR+, HER2- Dx 9/17/2010, IDC, 2cm, Stage IIA, Grade 3, 1/6 nodes, ER+/PR+, HER2+ Dx 11/4/2015, IDC, Right, 2cm, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jun 1, 2017 11:35AM Ginplius wrote:

Hi Chrissy and everybody else!

Wow... thank you for your time and all the information and advice, you did answer to all of my questions, I am very very appreciated! I was fine until now, but when I found out that it is Her2+ and did a bit of research, the enormours fear landed on me. I just hope today will be a better day and I will be back to normal at least for some time without fear hitting me;) Yes, I think a professional assistance would help me to go through this journey... I think I have no idea what is waiting for me and how I will manage it;) I am scaread of reacurrence or spreading to the other body parts, scared of how my body will react to all those medications.

They did some scans of my breasts and armpit when locating the sentinel lymph node before surgery. They did ECG and blood test and that is it. Maybe onc will do more scans before treatment.

Thank you for all your warm and encouraging words and welcoming me to your community!:)

Thsnk you;)

Gin

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Jun 1, 2017 01:02PM chrissyb wrote:

Gin, I understand fully your fear of spread........I think it's the biggest fear for all of us.

Speaking from experience, (my cancer spread to my bones and was found in 2009 after original diagnosis in 2003), I can tell you that even if it does spread you deal with that too. You do what is necessary on a daily basis and learn to live life to the full.

Some of the treatments are pretty harsh but our bodies manage reasonably well. In order for us to get through it all there are many drugs available to help minimize the side effects and it is the job of your oncologist to give you what you need to do just that.

The worst of the side effects are nausea, diarrhea, fatigue and hair loss. Rest, drinking loads of water and taking the meds that your onc will give you will ease these problems. You will find that you don't feel really bad all the time, just for a few days after each treatment.

Deep breath lovely, you can do this.

Love n hugs. Chrissy

I found my peace which gave me strength. 52 at dx. Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Jun 1, 2017 01:23PM Trisha-Anne wrote:

Hi Gin, sorry you had to find us, but you've found the right group of women to help you along the way.

Where in Australia are you?

I had triple positive bc in 2010 and did three rounds of FEC then two rounds of Taxotere (should have been three but my body couldn't tolerate it) and twelve months of Herceptin. The FEC was doable - not wonderful, but I got through it. Taxotere was a nightmare for me - but other women have found FEC a nightmare and Taxotere easy - we are all different. Herceptin was almost a walk in the park - apart from some fatigue and diahorrea (and more towards the end than the beginning). I worked through all that treatment, although at greatly reduced hours during chemo. While just on Herceptin, I worked full time.

You should have had full body scans before your surgery to see if the cancer had spread to any part of your body - did your breast surgeon or oncologist not order this? If not - I'd be chasing it up.

I had a mastectomy in 2010 - I had both IDC and ILC in the same breast, so didn't really have a choice, a lumpectomy was never going to work for me. I also chose not to have reconstruction.

I actually wanted to have a double mastectomy in 2010, as I didn't want to have to deal with the fear of it coming back in the other breast. My breast surgeon at the time refused to remove a "perfectly healthy breast".

In 2015 I found a lump in my other breast, this time it was triple negative. So had that breast removed, followed by six months of pretty brutal chemo. I'm 13 months out of that second lot of chemo now, and doing fairly well. I didn't work during the last lot of chemo - I couldn't have. But I'm back at work now, and enjoying life.

After the first lot of bc, I worried a lot about recurrence. Triple positive is pretty aggressive - but Herceptin is a game changer and I don't worry about that any more. Having a second diagnosis absolutely floored me though, and triple negative is also very aggressive, but there's no drug like Herceptin to add to the arsenal to fight it. There's just chemo and hope.

I've learned not to worry. I do occasionally, but 99% of the time, I refuse to worry about something that might not ever happen. If it does then I'll worry about it then. If it never happens, I'll have wasted time worrying about nothing, and life is too precious. I enjoy each day - I have a lot of health issues now after two lots of chemo in 6 years, but a lot of the time I feel happy, healthy and contented.

We are all different though - and you may need help to get to the stage where you don't worry - your GP should have set you up with a health care plan that includes visits to a psychologist to help you cope.

Please make sure you let us know how you are going - feel free to rant, cry and laugh on here with us - we are all here for you.

Trish

xoxo

I have made a long journey and been to a strange land and I've seen the dark man very close ... Thomas Wolfe Dx 9/17/2010, ILC, <1cm, Grade 1, ER+/PR+, HER2- Dx 9/17/2010, IDC, 2cm, Stage IIA, Grade 3, 1/6 nodes, ER+/PR+, HER2+ Dx 11/4/2015, IDC, Right, 2cm, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jun 2, 2017 07:27PM Ginplius wrote:

Hi Chrissy,

You are such a sweetheart!:) Thank you! You are so strong like a rock. How are you today? Are you cured? Do you still have fear or you found a away not to worry?

I am feeling much better last few days and trying to stop any negative thoughts entering my head;)

I find it annoying when friends try to comfort me by saying I know everything will be fine, you will fine... and then I think to myself... you have no idea how I am feeling or how I'll be... I find it hard to talk to others who did not have this experience because you cannot relate to each other ... or others start sharing their relatives cancer experiences & how well they are...and I cannot relate to that as well as every cancer is different, a person is different and a treatment is different. So I prefer not to talk with my others about it. Did you have similar feelings as well or I am a bit not normal... haha;)

Thank you Chrissy... I really hope you are well now!

Xxx & hugs, Gin

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Jun 2, 2017 07:48PM Ginplius wrote:

Hi Trish,

Thank you so much for sharing your story with me! I can learn a lot... and makes me feel much better!

Nobody asked me to do full body scans. I asked my surgeon about MRI, but he said I do not need it. I am going to see my onc in two weeks and surgeon on Monday. I have not seen my GP yet since diagnosis. Whom should I ask to do all the scans surgeon, onc or GP and which scans? I read that others get MRI, PET, CT scans and bone scan? Is it right? I definately would like to get full body scan especially with Her2+.

I had a wide local excision surgery, but seriously consideting mastectomy as well. Awaiting for my genetic test results as my grandma had ovarian cancer:/

I am trying to reduce my working hours and arrange work from home, that would help me in the begining to deal with all the life routine changes and so many doctor appointments.

I will ask my surgeon or GP for pdychologist referral.

I am so impressed with your attitude towards life and your strength. I really wish you live in peace and you never need to go through this again.

You are so all supporting and empowering and you make me feel that is all okay and doable! Thank you so much for your big & warm heart!

So happy I found you;)

I am based in Sydney. I think you are in Brisbane?

Have a lovely weekend!

Xxx

Gin

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Jun 2, 2017 07:51PM Ginplius wrote:

Hi Trish,

I mixed up I see you are in Canberra.

One more question:)

Was it very painful after mastectomy... maybe it is a silly question:/... how bad was the pain and for how long?

Thank you!

My warmest regards,

Gin

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Jun 5, 2017 12:59PM Trisha-Anne wrote:

Hi Gin

My breast surgeon organised my scans prior to surgery. I had a CT scan as well as a bone scan (full body). MRI isn't used much for staging in Australia (too expensive, when the other two will do the job). Your GP is the one to organise your health care plan for a psychologist.

A mastectomy is painful, but not overwhelmingly so. I had pain the first 24 hours or so, but after that it was more discomfort. I couldn't find a comfortable way to sleep, and it felt like someone had tied a rubber band around my chest really tight. That discomfort gradually decreased until you don't notice it. I can't remember exactly how long that lasted for - at least four weeks though. It doesn't stop you from doing most things - but you can't drive, lift or do anything heavy for around 2 to 3 weeks.

Yes - I'm in Canberra! :-)

Trish

xoxo

I have made a long journey and been to a strange land and I've seen the dark man very close ... Thomas Wolfe Dx 9/17/2010, ILC, <1cm, Grade 1, ER+/PR+, HER2- Dx 9/17/2010, IDC, 2cm, Stage IIA, Grade 3, 1/6 nodes, ER+/PR+, HER2+ Dx 11/4/2015, IDC, Right, 2cm, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jun 8, 2017 01:11AM kyliet wrote:

Hi everyone,

Sorry I haven't been around much, just wanted to say hi!

Lucy, sending hugs for your grandson xxxx

When life gives you a 100 reasons to cry, show life you have a 1000 reasons to smile. Mulitfocal, ECE, lymph. channel invasion, Chemo. RADs. Arimidex. Monthly Zoladex. Dx 11/11/2011, IDC, Left, 1cm, Stage IIA, Grade 1, 3/26 nodes, ER+/PR+, HER2-
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Jun 11, 2017 01:18AM Ginplius wrote:

Thank you Trish!!! One more question :) did you get second opinion about your treatment plan?

Thanks, Gin


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Jun 15, 2017 02:03PM Ginplius wrote:

Hi ladies,

I hope you all doing well! I am feeling much better and looking forward to start my treatment.

I am starting my chemo next Friday 12 rounds of Taxol on weekly basis and Herceptin every 3rd week for 12 month.

I was told that I will be fine and should not feel many side effects and most likely will not lose my hair, just thinning.

I hope that is how it is going to be:)

My warmest wishes to all of you!

Xxx

Gin



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Jun 15, 2017 05:34PM chrissyb wrote:

Yay Gin! So glad you have finally got your treatment plan and a start date........it's scary but doable. Don't forget to tell your onc and or the chemo nurse if you have side effects as they can give you things to help.

Stay in touch and ask questions. ......we are here to support you through out. If you want my phone number just let me know and I'll PM it to you. ......sometimes it's good to hear a voice rather than just reading words.

Love n hugs. Chrissy

I found my peace which gave me strength. 52 at dx. Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Jun 19, 2017 11:16AM Trisha-Anne wrote:

Hi Gin

I'm sorry, I haven't been on here for a while! No - I didn't get a second opinion for my treatment plan. The first time around, I knew it was the standard of care in Australia. The second time around I knew much, much more, and also knew it was the standard of care for that type of cancer.

I see you are getting Herceptin - you must be triple positive. That's what I was the first time, I had Herceptin for 12 months too. When you are having the Taxol infusion, make sure you suck on ice. It can be ice or an ice-block. I found that doing that (it has to be while you are getting the Taxol) it helps with the horrible taste change. Herceptin is relatively easy. I found that the majority of the infusions I didn't have very many side effects. I did get headaches and diarrhoea for the last 4 or 5 treatments though.

I'm not sure how the hair loss will work on just Taxol - I had FEC first (the first time around) and it's that combination that makes your hair fall out. My hair actually started to grow on Taxol, it was light and fluffy and not my normal hair, but it was growing! It will be interesting to see how you go.

Have you had a port put in? It makes the infusions so much easier.

Please let us know how you are going.

Trish

xoxo


I have made a long journey and been to a strange land and I've seen the dark man very close ... Thomas Wolfe Dx 9/17/2010, ILC, <1cm, Grade 1, ER+/PR+, HER2- Dx 9/17/2010, IDC, 2cm, Stage IIA, Grade 3, 1/6 nodes, ER+/PR+, HER2+ Dx 11/4/2015, IDC, Right, 2cm, Grade 3, 0/5 nodes, ER-/PR-, HER2-

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