Not sure where to turn for advice
Having been recently diagnosed with a 7.7cm tumour in my B-cup breast (luminal A, invasive ductal carcinoma) and no detectable tumours elsewhere, I've been scheduled for a mastectomy next week, followed by radiation, and possibly chemo, age 43. I don't want to have a mastectomy or subsequent treatment, for a number of reasons. Psychological firstly. Not having longevity as a goal. Not feeling I can physically show up and consent to disfiguring, aggressive and permanently polluting (of body) treatments - feeling that I'd rather die a natural death. Not fearing death. Not feeling any psychological aversion to what's in my breast, not feeling any pain or physical inconvenience from it currently. And also because if it hasn't spread in all the time it took to get that big, evidence that I've found seems to indicate it's not going to spread. (i.e. cancers between about 6cm and 15cm at diagnosis have about equal chance of also having been found in lymph nodes or elsewhere at diagnosis - the 15cm cancers were once 7cm but no greater chance of spread in all that time? Seems the horse has already bolted and is just hiding out dormant elsewhere in body already, or is just peacefully grazing in its own paddock and will never bolt, so either way what's the point in closing the gate / lopping the tit anyway?) I know this is such an unusual way of thinking and I'm having so much trouble getting relevant advice. If I don't get treatment what can I expect my body to do? I'm also very worried about causing distress to people close to me who still expect me to get these awful treatments, I feel pushed by their expectations to do something major to my body I feel personally averse to, I don't know how to tell them. Wondering how to not distress others in any way, seems to be the cause of the majority of my own distress. Any suggestions for where to turn for more advice, or if anyone has had similar thoughts, or evidence/articles to contradict the idea that cancer spreads early in its development if it's going to at all, or just impressions about this situation you might like to share, I would appreciate it. (I have just started seeing a general counsellor with no cancer knowledge, and have also contacted Cancer Council counselling and made an appointment but that will be in 3 weeks. I don't think they'll have the medical answers I'm after, anyway. More support and sooner and more relevant could be so stress-relieving.) Sorry for long post and weird topic.
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
Psychiatrist / Psychologist Needed - Melbourne
Hi All, I had a lumpectomy due to 3 types of breast cancers in my right breast. But for the last 18 months i haven't been able to work due to my mental health. I am looking for a Psychiatrist and a Psychologist to help me get back to normal. Does anyone have any experience with someone they can recommend in Melbourne please? Really struggling. Any help will be appreciated. Thank you
Depression suicide ideation
Hello, I have had a rough time with agitated depression/anxiety and continue with suicide ideation since being diagnosed with BC in March 23, unilateral mastectomy, recon, infection and chemo, hormone treatment to come. I have a psychiatrist, psychologist and am on medication, I am a mother of two young boys with no depression history. I feel like I am living someone else’s life, so strange. Has anyone else struggled in this way and made it through? Thank you
Why can’t I find a local support group???
I live on the Central Coast which everyone is telling me has the second most prevalent cases of breast cancer in Australia. I was diagnosed with early breast cancer in August and have since undergone 2 surgeries. Currently have the “Dracula” drain which I hate with a vengeance. I am lucky enough to have a very loving sister who has come to help me during this trying time but she doesn’t live close by normally. I am soon to start the radiation/maybe chemo/medication treatments and Iv’e been trying to find a local support group to help me through. I NEED people who have gone down the exact same track as me, who understand the emotional roller coaster the this experience actually is. I don’t think anyone who has not been actually through it, including the medical professionals, who can totally understand the impact on your mental state. I have always prided myself as being a very strong person but this has all brought me down to a feeling of despair.
Supporting a loved one with post-cancer depression
Hi there, I'm looking for some guidance as to supporting a loved one who has developed symptoms of depression after surviving breast cancer. She has actually experienced breast cancer twice, as well as losing a close friend to metastatic breast cancer, all before the age of 50. Since completing chemotherapy the last time, she has really struggled. She's lost all self-confidence, lives in fear of it returning, and feels isolated and angry. When she's feeling really low, she asks "why me?" and feels as though she's being punished for something. I just wish she could be happy, but don't know what to do. I can't say anything that helps because I haven't lived in her shoes. Anytime we mention support groups, therapy or medication to help with her struggles, she becomes very defensive and feels even more isolated. I just don't know what to do. Perhaps if there was anyone who has shared a similar experience would have some insight? If so, I'd really appreciate it.
Feeling very isolated
I am 35, and was diagnosed last year on July 12th with triple negative inflammatory breast cancer. I started AC double dose chemo on the 27th of July and then paclitaxal 21st of September. Early November it became clear the pacli had stopped being effective on the cancer in my breast so I was zoomed into surgery and had a unilateral mastectomy and auxiliary lymph node removal November 25th. I started Carboplatin December 20th and have it again January 11th, before switching to radiotherapy five days a week for five weeks January 31st. After that I’m being told two more Carboplatin, then capecitabine for six months. I’ve had allergic reactions, side effects and difficulties throughout. I think due to covid there has been no support groups that I’ve been put in touch with and the only people I already know who’ve been through breast cancer are in their 60’s and have had a very different journey and experience and support network. I’m single, living in share accomodation in the inner west of Sydney and am currently disabled due to my mental health (and was before my cancer diagnosis). Some friends have been amazing and some have been so selfish and awful it’s hard to believe. I’m just wondering if there are support groups that I’m just not finding. Either for younger people or for LGBTQIA+ people. Covid has made everything harder and I’m really finding it all very exhausting and overwhelming- especially since the world keeps on burning and normal everyday life nonsense keeps happening. I’m exhausted and struggling. Any help much appreciated.Trying to Stay Positive my journey
"You look so well, lost weight" comments from people l may have not seen for a little while. Thank you l say with a beaming smile, they don't know, should I tell them or not, I don't. l have stage 4 metastatic breast cancer incurable and aggressive l've been told, the little devils have been having a great road trip partying around my body setting up camp in several spots in my spine, hips skull, lungs, ribs, nodes. This diagnosis came about totally unexpected after an unrelated ct scan for my nigglying cough. Thank you to my great GP for insisting as I wasn't going to have it only had a slight annoying cough nothing to be concerned about. Radiologist saw suspicious lung rang spots rang gp, gp rang me and within a week after bone scans biopsies etc l was sitting in the oncologist office "best we can do is try to control this" silly me asked the question as I was still thinking this is nothing to be concerned about, how long if I don't have treatment? "12months" so here I am on the treatment. My life turned upside down and inside out in May 2018. I am now on letrozole and Kisquali (Ribociclib) and l am nervously awaiting my scans end of next week to see if this treatment is working. I am usually a happy positive person but seem to have fallen into a bit of a hole at the moment. I find it very hard at times with people telling me you look well, you're an inspiration, bla bla etc etc, when all l want to do is sit in the corner and cry. It's especially frustrating as l've already had bc in 2004, "it's only dcis" treat with radiation but the returned so left side mastectomy/reconstruction 2006, then recurrence right side 2012 "it's only dcis" again radiation and lumpectomy and l can get on with my life and nothing had shown up in my regular breast mammograms BUT some little party going cancer cells escaped and have been waiting and now have had a great road trip around my body. I find it really hard to talk to family and friends about how I am really feeling as I worry about how they are coping, so sharing my story here has already made be feel positive again, reading threads of what all the other wonderful ladies are going through is truly inspiring. I'm trying hard to stay positive for my next appointment with my wonderful Oncologist on 1 Nov and that she will tell me there is no progression. enough of my rambling thankyou for reading my story
TERRIFIED of Treatment
I’m not sure I can convey in writing how terrified I am I’m not sure there is a word to describe it the worry I feel is debilitating, I already suffer from anxiety and this is just exasperating it, i was diagnosed about a month ago and have had a Lumpectomy with good results margins were clear and lymph nodes were clear, my cancer is triple negative and they are still wanting me to have chemo and radiation. The plan is 12 weekly doses of chemo then about 15-20 treatments of radiation along with Herceptin every 3 weeks for a year. I am supposed to go to Hospital on Tuesday for Echocardiogram, Port Insertion and my first chemo. Everday for the last two weeks I have woken up at 6am in what I think is a panic attack I have tingles all over my body and shaking and I don’t want to get out of bed I’m at a point where I don’t think I’m going to be able to get myself to the hospital on Tuesday, and on top of all this I live in Melbourne so we have COVID to deal with which means no one can come to hospital with me I have to do this alone. I am terrified of having the port put in and the thought of it being in my body for so long is terrifying to me I am also completely terrified of the chemo and all the worry it will cause me between treatments having to monitor temperature etc etc will be so stressful for me. I have tried conveying this to various people (Doctors, Family, Psycologist) and all they say is you have to do this and take one step at a time, I feel like no one is really grasping how terrified I am and no one is helping me with the mental side of this, am I the only one that feels this way please HELP me as I don’t think I can mentally survive this and am seriously considering not going on Tuesday.Survey on how you are travelling post treatment .... BCNA benefits too from each survey submitted!
I’ve just completed this survey ..... check it out! BCNA gets $1 for each complete survey too! https://surveys.usq.edu.au/index.php/589267?fbclid=IwAR2jUg0P6-dc2m0vBZYofwKC2fZ2oPs8LZdUFaMPql3daLiw7YitLk27c34
