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The other comment I have is my mum passed away from breast cancer. She was Grade 3, stage 4 with METS. She got 15 months from diagnosis. This is the only script I have in my head. I really need to hear stories from people who are similar to me and what their treatment pathway looks like.
Lastly, we are a family who lives with high levels of stress and caregiving roles. We are a blended family with five children between us. One adult child was the victim of a crime against her and had to be placed in witness protection. We spent a lot of money protecting her and her children and moving them from one end of the country to the other. We followed to support her. She is in a new relationship with a lovely guy and she has two additional children to him. Her eldest daughter was the victim of sexual abuse and the perpetrator is now in jail for his crimes. My anxiety and emotions will rise when we learn that he is granted parole. Two of our adult sons have a severe intellectual disability. They live at home with us. They are generally very good with good structure and boundaries. My daughter lives at home with us with her little boy who turns 4 soon. She is doing her teaching degree. We also have started to support my nephew and his girlfriend. They have just moved in and we are not asking for board or rent in lieu of participation in household chores and their share of cooking. We plan to support my nephew into his first job and his girlfriend into the TAFE course that she wants to do. That’s a lot on our plate in addition to my diagnosis, but I think it will work.
Any stories that describe the treatments that was recommended to you and snippets of wisdom would be really helpful and appreciated.
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Welcome, so sorry you have to be here but, as you say, your diagnosis indicates that your bc is very treatable. Clearly you already have an enormous amount to deal with and you do not need this. But there it is. My diagnosis was different from yours and I am sure others will be able to talk to you in much more useful detail. But it may be worth noting that my cancer was more advanced, had spread to one lymph node and that 5 years on I have no evidence of disease. There are sadly no guarantees, but there are other scripts! A family that rallies around and supports each other is a great thing, and you sound remarkably organised and ready to start licking this one too. Best wishes.3
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Hi @Janine60 and welcome to the forum. Goodness you have a lot on your plate but hopefully everyone will be able to chip in to assist you and help get you thought this. I was diagnosed May 2016 with early stage BC think it was dcis, but it wasn't clearly identified. I had a 2.7cm malignant tumour and a satellite lesion in the left breast (lesion was benign). I decided to have a mastectomy simply because the benign lesion was abnormal cells that I didn't want lurking in my breast waiting for them to attack!! I was told that my tumour was aggressive and that I would definitely need chemotherapy and depending on whether there was any lymph node involvement would dictate radiotherapy. Because of where the tumour was my surgeon suggested a skin and nipple sparing mastectomy and I wanted immediate reconstruction with an implant which she agreed to. Had that done June 2016. Tumour turned out to be grade 1 stage 2. Lesion benign. No lymph node involvement. Because I had chosen mastectomy and no lymph nodes were involved no radiation. Because it was grade 1 with no lymph nodes no chemotherapy. I too am Er/PR+ Her2- so have been on Tamoxifen which has pushed me into menopause (was 50 when diagnosed so would have been facing menopause anyway!). Next July I will be swapped to an aromatase inhibitor as I am now in menopause these tablets will be more effective in stopping a recurrence. Am doing beautifully, thoroughly enjoying and appreciating life to the max. Have you joined the reconstruction group yet?
http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction there are photos about ladies reconstructions should you choose to go down the recon path. You just have to write why you'd like to join. More than happy to answer any questions. Xx Cath (sorry about the novel!)
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Mine was aggressive carcinoma grade 2 and unfortunately after a single side mastectomy I had one lymph node positive. I had further surgery to clear all the nodes but they all turned out negative for cancer cells. Because I had the axillary clearance and the mastectomy they said I didn't need radiotherapy however I did have 4 lots of chemo. Since I am er+pr+ I am now on Tamoxifen and am a 2 year survivor.0
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hi Janine60
here is a link to help you use the forum
http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p10 -
Welcome @Janine60,
I too have a blended family of 5. I have twin daughters and my husband has 2 daughters and a son which have all lived with us since they were little. They are all young adults now (18-22) with 4 still living at home. Blended families can be tough at the best of times which I am sure you know. You must be one organised, generous, caring wonder woman as it is! It never failes to amaze me the strength and selflessness that women have.
So sorry to hear about your mum, but as you read through the posts you will see everyones story can have similarities but are all unique in there own way and there are many many woman on here down the track a number of years cancer free and back doing everything they love.
I had a 19mm breast lesion and 25mm lymph node one (I found this one first) . IDC & DCIS ER/PR+ HER-. I had lumpectomy and lymph node clearance. Pathology came back as grade 2 stage 2. Turned out there were 5 nodes involved.
So lumpectomy, re excision to get better margins, 6 months chemo and 6 weeks radiation was the prize for that one. Hopefully you will luck out on the chemo.
I have been on hormone therapy for 5months. 15 months on and all scans clear.
Lots of hugs and take some time to look after yourself. XOXOXO1 -
Hi Janine,
I'd love to be able to help you figure out what your diagnosis means and what to expect, but the one thing you learn very quickly is that no two people are the same and that while there may be similarities between your disease and someone else's, you will absolutely do your head in trying to make comparisons. Not helpful, I know, but neither is misinformation (which you are likely to get a shit load of too)
When you finally get to talk to your oncologist be mindful that they have to inform you of all the treatment options available to you. That's a bit of arse covering in some respects, but it does mean you are fully informed and no-one is making decisions on your behalf about what may, or may not, be acceptable to you. It is incredibly stressful and confusing. We have women who are frantic with worry because they have been told their level of disease doesn't warrant chemo and others who won't have it even when it can make a significant difference.
Wait and see what options are given to you, then come back and let us help you think through them, Once you know what is recommended in your individual case start researching. It takes years and years to be an oncologist, you can not possibly learn about all the variations in the next week. wait until the field narrows a bit.
Best of luck, Marg xxx
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Thanks - and yes, you are right. My step-daughter was an oncology nurse and she read my report this morning. She no longer works in the area. I see you are in regional Victoria, I am as well. Are there any groups - meeting for lunch and things like that? Although I do realise that they would be governed by how tired people felt and what stage of treatment they are at. I am worrying a bit around whether my disease warrants chemo - only because I want the highest possible rates for not recurring. I think once I sit down with the oncologist, we can make decisions. It’s just the waiting..... thanks again.1
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Your breast care nurse will be able to tell you about support groups in your area. They seem to be particularly good at this sort of stuff in regional areas as they are more connected to their communities. If you haven't been in contact with a breast care nurse, give a shout out and someone will pop up a link for you (I'm hopeless at that stuff)
I don't get involved with support or social groups apart from this one; I am far too grumpy to find lunch appointments appealing. Even if I do go I want to go home half way through the meal--I'm a right pain in the arse like that. A wee bit antisocial. I'm happiest when people come to visit me, then I just go to bed when it suits and leave them to it
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If you use the BCNA website, as opposed to this the forum, you will be able to surf around and find an area for support groups in your area - there's lots to explore or use the Search on the right hand side of the page
Here's a link if you are miles from anywhere
https://www.bcna.org.au/health-wellbeing/support-in-rural-areas/
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@Janine60
The what and how thread.
http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1
Breast Care Nurses
https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx
My Journey Kits and other resources.
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Thank you.0
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Hi @Janine60, welcome, but sorry you have to be here.
Wow, your place sounds busy! But I hope that having everyone around will help you cope thru treatment or certainly be good distraction for you.
As far as your path report goes, get your oncologist to go through it all with you. We are all 'experts' in our own story and each are individual. We are all here for you xx1 -
Distraction works well. Today our youngest granddaughter came round with her little brother. I took her to a craft shop to get some scrapbook supplies and she played with my kids and families. We have such a lovely blended family. ❤️❤️❤️1
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my kids are adults. My nephew was showing our 2 year grandson how to fire the nerf guns. He came out to try and shoot poppy.1
