Breast Cancer in the desert....
I have just joined BCNA. I was diagnosed with Stage 2b luminal b breast cancer aged 48 last August. I am currently 7 months into my treatment. I had neo adjuvant chemotherapy followed by surgery. I have radiation and hormone therapy to go. My prognosis is not fabulous as my post-operative pathology report showed substantial residual tumour of an intermediate grade. I travel from Alice Springs to Melbourne for treatment and have an 8 year old daughter with special needs who lives with her father in Central Australia and who misses her mama terribly when I am away for treatment. I would love to hear from other women whose response to neo adjuvant chemo was not great or who have young children or who live remotely and have to travel long distances for treatment. Any support or similar stories would be greatly appreciated. I am looking for some hope so I don't feel so alone in the desert...
Comments
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Hello Lisa
I don't have any of those experiences which must make a hard diagnosis all the harder. But if you want someone to catch up in Melbourne for a chat, just let me know and how to contact you when you are here.
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Hi Lisa,
Welcome to the Online Network. We are here to make sure that you don't feel so alone. Ask as many questions as you need as we have a wonderful community here to support you.
Please let me know if you need any assistance with anything.
~Ann-Marie
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Hi Lisa,
I didn't have neoadjuvent chemotherapy but I live in Darwin so I understand the Isolation you must be feeling, I was diagnosed May last year with Stage 2b Early Stage Breast Cancer but I had 3 Tumours 2 were Grade 2 tumors sitting on a DCIS non malignant tumor almost malignant but was able to be removed, I am 46 turning 47 in June and I have finished Active Treatment as in just over 5 months of Chemo and 6 weeks of Radiation and numerous surgeries, breast cancer alone is so hard to come to terms with but when there are children involved young children it is so much harder.
When I was diagnosed my daughter Angelena was 9 ( now 10 ) and we're very close but we weren't seperated at any time but my biggest concern for me was my little girl and how she was going to handle seeing what her mum was about to go through so I spoke to her school and they were amazing as I have done Volunteer work with the children since our daughter was in preschool, she's now in year 4 we have a very good relationship, I have a very supportive husband and mother in law, in Darwin we have an amazing Cancer Center it's called the Allan Walker Cancer Center and was opened in 2010 they do everything and they even have accomodation across the road from the cancer center maybe you can talk to your doctors and suggest finishing your tretment in Darwin just a suggestion, this is just advice from 1 mum to another but when your at home I know you will be tired at times but maybe doing little things with your daughter like reading her a story, drawing pictures little things you can manage to do with her will mean the world to her, through my volunteer work I have worked with a lot of children with special needs and one of my daughters closest friends Claisse has Autism and she's the sweetest little girl but her mum has leukemia so she understands mum gets tired and that mum is sick. If you need anything you can private message me on here you click on my photo well the lady and it goes to my profile page and you can select message or answer this post and I will reply to your post. You are a very brave woman and a good mother there's a little saying I believe WE ARE WOMEN HEAR US ROAR!!!!!!!! you are never alone on this network the support is endless, sending you a cuddle and a big smile and heaps of positive vibes.
Anita xx
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Hi Anita
Lovely to hear from someone in the Territory. I feel so far from home when I am in Melbourne. Also nice to hear from someone who is through their active treatment.
There was heaps of useful information in your message especially about the radiation facility in Darwin.I would love to send you a private message if I can figure out how to do it. On line forums are new to me.
Thanks again
Lisa
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Hi Lisa,
I am so glad you replied to my post I will send you a private message now, it will come up in your messages from Anita Wickremasena and you just click reply.
Sending lots of cuddles and heaps of smiles.
Anita xx
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Hi Lisa,
If you need any help with the online network just let me know. Anita thank you so much xx
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Hi Lisa. I too had neoadjuvant chemo. My biggest response was a reduction in my ki67. Otherwise, not a lot of response. I have struggled to get information on prognosis. I finished active treatment just over 2 months ago. On another point, I spent 8 years in Alice Springs, from 1992 -2000.
Take care, Lyn0 -
Hi Lyn
Thanks heaps for your message. My biggest response was also a big reduction in ki67 and my tumour went down from Grade 3 to Grade 2. For me it was a quite a shock because my medical team kept telling me how excellently my tumour was responding to treatment. Maybe I misunderstood what the neo adjuvant chemo was supposed to achieve. Anyway I have to keep positive and hope for the best. I have been in Alice for 10 years now, originally from Melbourne which is where I am having my treatment. Recovering from surgery at the moment. Ouch! The pain killers are helping. Missing Alice terribly. Can't wait for that vast blue sky again. Are you on tamoxifen? Wondering how you are going with that? Thanks again for your reply. Take care. Lisa
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Hi Lisa, I've been have some device issues, so haven't responded. I'm on one of the other medications, Femara, as I had previously had a couple of superficial vein clots, so Tamoxifen was out for me. I'm going ok with that, a few minor side effects, nothing major. I hope you're at home in Alice now, resting up before radiotherapy, andcspending somectime with your husband and daughter.
Will send a pm soon, now that I have the technology sorted, lol.
Take care, Lyn
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