Post surgery Rehab options
Hi all, hope you all are doing fine. I wanted to share my experience in y BC journey and also want to get some expert advice/ help if you have been thru this already. I was diagnosed with a stage 3 Triple positive BC last July. Since then I have been going through Chemotherapy and targeted therapy as advised my Breat surgeon and Oncologist. I recently completed my 6th cycle of Chemo and have my surgery scheduled this Saturday on. 6Dec. I will need to undergo full Mastectomy on my left. This will be followed by immediate reconstruction- will be a lengthy process I have been told. While understandably we are all nervous , I am also hopeful that I have been thru half of my battle. I am also a mother of two, and younger one is only 2.5 years old. I am also really anxious about the post surgery situation. My Doctor has told that I should not be taking stairs post surgery after I go back home. Given that I have little kids at home and none of our bedrooms are at downstairs, I am really keen to see if I can stay at a Rehab after I am released from the hospital. This would allow me to heal for few more days and would not endanger myself with the little one ( she jumps on to my lap anytime she wants). That would also help my husband who is my only carer at this stage. Love to get some ideas and advice how can I avail the Rehab facilities. I was also told by my Insurance provider that I have restrictive coverage for Rehab. I am in a tricky situation ( and am sure many of you are ) and wanting see what support can I get at this very difficult time. Many thanks and wish me luck!
Resources for my kids
Hi everyone 👋 I'm 34 years old and recently diagnosed. About to start chemotherapy and want to find some books or resources to help me talk to my young kids about it when I start. I think my 4 year old daughter is going to be particularly shaken by the hair loss and visible impacts of chemo. Any recommendations?
Papillary Lesion - overwhelming anxiety
Hi Everyone, Sorry if this isn't the right place for this post, but I'm feeling overwhelmed and very alone right now. I have been a member here for 13 years and it's crazy to think that it was initially to help support my mum with her breast cancer. Now, here I am with my own possible issue... My mother developed her breast cancer (stage 2c) at age 46, the same age I am now. She's alive and well after treatment (partial mastectomy and hysterecotomy), but it's also meant that I get my boobs checked regularly via mammo and/or ultrasound. This year, they found a 'papillary lesion or complex cyst' - that's what it says on my GP's referral for me to get another U/S and a core biopsy if needed. I mean, it's hard to NOT know someone who's been through a breast cancer journey these days. There are so many women who've experienced it. I've always felt like my turn was just around the corner. What's probably made me even more anxious is that my dear cousin is battling Stage 4 MBC and I've been in contact with her frequently to try and support her. She and I are in very similar circumstances (ie. living alone with kids) so I can't help but feel very deeply for her. I think holding that emotional space has done a number on me... Compounding the issue is that I have pretty severe PTSD which I've got under control for years now, but suddenly I'm having panic attacks and struggling to do even the most basic tasks. I have no idea what I'll be like when I get the results of the second scan/biopsy. I live alone with my 17-year-old (who has special needs). Frankly, I'm terrified and the fear is paralysing me. GP is urging me to make mental health appointments to get it under control. What will happen to my child if I get sick? Sorry for the ramble. Any advice or wisdom would be so appreciated. I feel better just making this post. Thanks, Effy.
Emotional Guidance
Hello 👋 I was just diagnosed two weeks ago with HER2 Positive BC. I’m 36 yrs old with two young children and a wonderful husband. I’m struggling with the mental, emotional side of it all and wondering if anyone could recommend a book to read to help me through. I’m struggling with big feelings of sadness and anger. I seem to have lost my want to get up and do every day things. I just want to sleep to forget. I don’t like this feeling and would really like to read and understand coping mechanisms to get me through. thank you x
Questions to ask 'Post Surgery' of yourself - to your Specialists - Tick Sheets - Self assessment
I know that after my own surgery, I didn't always quite know what questions to ask of my surgeon and 'the team' that we all see regularly for the first 5 years following our treatment - so I set about looking for 'tick sheets' that would help me, as these appointments approached! I came across some really interesting files. They are all 'multi paged' so I've put a 'sample page' from each document to give you an idea of what is in it. The first booklet is available at most Cancer Clinics and was put out by the Cancer Council - 'Living Well After Cancer'. It is a good one to give to friends & relatives to read as well - to give them an idea of the longterm affects of cancer even after successful treatment - as they often think that once you've had your surgery, chemo, rads & tabs - that you are now 'well'. We all know that that is NOT necessarily the case! :( It really is a lifetime sentence. This booklet covers a lot of areas that concern us all - and may be able to help answer questions in many situations that we face. (sample page) The 2nd one is: "Questions to ask 'post cancer' " - a 'tick sheet' - these questions could be spread across the whole team - your surgeon, Onc and Rad Onc as well as GP. Tick the ones that are relevant to you in the lead up to your individual appointments. (sample page) The next is "Self Care Specific Symptoms" - this sheet could also be for any of your team - with the 2nd section relating more to mental health issues that may impact you. (sample sheet) And finally - a Survivorship Care Plan - virtually a ''Self Assessment Yearly Checkup'' sheet .... which has more specific symptoms that you may be concerned about and also has pages for noting yearly checkups required re Dexa, Mammograms, Colonoscopy, MRI etc - almost a 'diary' to keep re future appointments. (sample Pages) Write down the dates you've had them, and when the next one is. Add any other exams that are not already there You can use any or all of these documents to track how you feel you are progressing - date them & further down the track, you can compare them to see how you are travelling. Take care & I hope these sheets help in tracking your health - both mental and physical. xxx
Well, there's that then, meta-what?
Self diagnosed lump, x-ray, mammograms, ultrasound, infiltrating mass, biopsy, estrogen +ve, progesterone +ve, HER2 -ve with follow up labs, chest pain, enlarged nodes left arm, CT scan, bone scan, biopsy 2, marker uptake in sternum and liver. Liver ultrasound tomorrow with view to biopsy, if unable, then biopsy sternum. Next appt., 20/12, with view to immediate hormone therapy, depending upon results, start chemotherapy. "It's not good news" "You have metastatic cancer" I have no idea what that means. I've gone from phase 2 infiltrating ductal carcinoma, to "metastatic" - google: stage 4 metastases in the bone and liver - cheers, pending results, in about a week. All I can think about is, who is going to look after/ love my child if something happens to me? He has a delayed learning disability and autism spectrum disorders. He is a gorgeous boy, starts school next year, how much does he understand about what's going to happen to me on chemo/ hormone therapy. All I can think about is him. What am I going to do about him? What can I do for him? Other single Mums, how did you deal with this fear?Support and Family
Hi all, I have already posted my recent diagnosis story. Still going through the very early stages and I see my breast surgeon for the first time tomorrow. Today has been a bit tough. My son (15) was already suffering from anxiety prior to this diagnosis (although through meds and psychologist he was starting to get better), but it has really sent him in a spiral. He didn't want to attend school today and that was a real battle to get him there. I feel guilty that he is going through this and the problem is that things for me will certainly get worse before they get better (not to be negative, but I don't think the treatment will be a walk in the park) and this will all impact him. He says that when he is at school he cannot focus and I feel so bad for him. He is in Yr 10, but doing accelerated maths (so has started the year 12 component there). With all the anxiety he has had recently his work had already started to go downhill and now with this it is really suffering. My sister is incredibly supportive and positive, but I feel that I am ringing her constantly with my issues and didn't want to share this with her. I know that they want to be there for you, but I don't want to impact other's mental health. This doesn't only affect us, it also affects everyone around us. Does everyone feel like this when first diagnosed? I am sure it gets easier to navigate down the track. Yesterday my son asked if I was dying. It is difficult to answer this, since I don't know whether it has spread or not myself. Obviously, I do not say this to him, but how do others talk to their kids about this?Diagnosed last week- 1yr postpartum & still nursing
Hello, Sadly like many I'm new here! My story started in 2009, I was 32 & single when I was first diagnosed with invasive cancer. I was treated at the time with a lumpectomy, radiation & 5yrs on Tamoxifen. Seven months after my diagnosis I celebrated being cancer free with an overseas trip where I met my now husband. In July 2022, after 7 years of trying, & with the help of ART, we welcomed our little one, & she's a gem! Last week, just two days prior to her first birthday party we got the phone call advising me I have the same cancer again. I'm still nursing her 5-6 times in 24hrs, to any ladies out there in a similar boat, did anyone manage to keep nursing? I'm guessing we'll end up weaning quickly but the thought of that is heartbreaking (even though I know she's resilient & old enough, she just so little 😢). Side note, I'm still pending my treatment planning meeting but given the preliminary biopsy grades are higher than 2009, I can't imagine the road is going to be any easier than my first go around. Thanks in advance for any words of wisdom, especially when I comes to parenting litle ones during this time. 🙏Stage 1 hormone sensitive to Stage IV
Diagnosed last week with stage 1, hormone sensitive BC in my left breast after I came across a lump. I am 41 with 2 little sons, 4 & 6- it was a massive shock. After CT, bone scans & MRIs this week, my diagnosis has now changed to stage IV oligometastatic BC after finding it had spread to one vertebrae. To say I’m devastated is an understatement going from a curable stage 1 cancer to this. I am beside myself with worry on what this means for my kids- not being there for them, the battle ahead, continuing to work/pay mortgage & health bills and what being diagnosed with stage IV really means, particularly in regards to life expectancy. I don’t even know how I am going to cope/function with this news. I am meeting with my oncologist tomorrow to discuss what’s next- perhaps this will help. I did have surgery planned for mid April but this may change now. I would love to hear any suggestions on coping with your diagnosis, esp those with metastatic breast cancer. How do you stay positive to get through it? Thanks so much xFeeling alone and scared
I’m 36 with two young kids, newly diagnosed with lobular carcinoma. Have had a single mastectomy with axillary clearance. Pathology report shows 120mm (12cm) tumour (clear margins) and 23 lymph nodes removed, 10 with cancer. Starting 20 weeks of chemo in a couple of weeks, then radio, then hormone therapy (10 years). Doctor and oncologist use the term ‘treating for a cure’ however I’m still afraid about what the lymph node involvement means for my future. Im looking for stories of people in a similar position and how you are looking at the situation and stories of inspiration of people who had lymph node involvement and how they are getting on down the track. Thanks.
