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 š¢). 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. š
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 Iām 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 donāt even know how I am going to cope/function with this news. I am meeting with my oncologist tomorrow to discuss whatās 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
Iām 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 ātreating for a cureā however Iām 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.
Introduction...
hi there, Thought I'd say hi and introduce myself. I am 30 years old and have a 7 year old daughter. I was diagnosed on 27/11/2015. It all still feels very surreal and overwhelming. Doctors think I have Inflamatory Breast Cancer so are treating me for this diagnosis. My treatment plan is 6 rounds of chemo, surgery and then radiation. I meet with the oncologist in the next few days to learn more. I'm still trying to get my head around all the jargon, medical terms and medication names! I'm hoping I can find some support and answers to some of my questions here. Kylie
Young Mum
Hello everyone, I'm so grateful for this online community. It's been an overwhelming time for me. I was diagnosed on the 23/12/22 and had a really tough two weeks as I was unable to access any support just being to the time of year it was. I was breastfeeding my 20 month year old at the time, and didn't feel a lump, but just a weird sensation in my breast at random times during the day. I'm so grateful that my GP took it seriously enough to send me for an US. I have Grade 2 ER+ve, PR +ve 11mm x 4mm in my left breast. I'm 32 years old, and my Mum also has metastatic breast cancer (diagnosed at age 69, now she's 72). That wasn't a fun conversation telling her on Christmas Day. Reading through other people's experiences it seems that going public can be quite slow. I'm also finding that. It took about 5 weeks from me first going to the GP to getting my diagnosis, and I just found out today that my surgery has been pushed back from the 30th Jan to the 3rd of Feb. I understand things happen, but I had already organised childcare for my week post surgery and a friend was coming to stay to give me a hand. I do now get to drop off my son for his first day of kindy the day before surgery, so that's a bonus. I just want to get the treatment started so I can get past this part of life and back to being me. Does anyone have any advice over caring for 2 kids under 5 whilst on this journey? I'm so worried about not being able to be the Mum I want to be.
Are you a breast cancer survivor who happens to be childless?
I have been a member of this online network since 2014, just after my diagnosis. At a recent breast cancer seminar at a city near where I live, something hit me like it hasn't in all this time, the subject of survivors who happen to be childless. I thought to myself, "Noone talks about this. Why?" This has led me to do my research, as you do, I found this demographic of women are at higher risk of breast and ovarian cancer. It is explained this way, you are at a lower risk of diagnosis if you have children. Interesting I thought, Nuns are at a higher risk of breast cancer and ovarian, not that I am a Nun but an interesting statistic that gets me thinking. Which brings me to why I am posting. I am putting it out there in a courageous way to see if there is another like me. Courageous because for 30 years after my extensive efforts to go forth and multiply I walked away childless. The one thing I learned was to keep it to yourself as I found there were lots of people willing to give you their advice, just like they do with breast cancer 'cures', an emotive issue is best kept to yourself for your own emotional survival. I am running a personal survey just to see if there are other women within this network who are in the same boat as me. Does anyone else feel a little left out when sitting in a seminar and not to be included in the discussions? I tell ya, there is a real sense of alienation, but culturally we are told to, 'just get over it', which is fine and life for me has been fulfilling in spite of it all. My GP doesn't know of another single patient like me which isn't very encouraging in finding my tribe, my mother always said I am different when all you want to do is be like everyone else. So please step forward if you are like me or if you know someone who has a similar story. I feel it is a subject that needs discussion and inclusion because in society we, the childless women are 1 in 5, by choice or by circumstance. Cheers JanetHormone Therapy advice for young women who want to have children
Hi everyone š Iām seeking some advice on what hormone therapy is best for younger women who want kids in the future. I have Grade 1 multifocal IDC+DCIS, 80% hormone positive, ER- cancer & Iām premenopausal, with no children. I was told after 2 years of hormone therapy I can try to fall pregnant (ā¦but am hoping 1.5 will be enough?) I have been given three options for hormone therapy: ā¢Tamoxifen only ā¢Zoladex + Tamoxifen ā¢Zoladex + Exemestane (Aromasin) All offer similar coverage in regards to my type of cancer, but I was wondering if there are any differences in regards to future fertility? ie. longer detox periods required before falling pregnant, or potential fertility issues after long term use, eg Zoladex or Exemestane? I have also read that Exemestane (Aromasin) is an *irreversible* steroidal aromatase inhibitor. I donāt want to be on anything that could irreversibly damage my oestrogen production.. Fertility-wise, does anyone know if this is something to avoid until after having children? Iād really appreciate any advice & tips for having the best chance of getting pregnant in 2 years! X
