Recovery with other chronic illness/disease
I'm through treatment (surgery and radiation) and the stress of making the huge decision not to take AI’s (pure mucinous carcinoma) and. Y onco team is fine with that. But I suspect like many, breast cancer is not my only life or health issue. Five weeks after radiotherapy I’m so fatigued I’m having trouble doing much. I also have diabetes, severe kidney disease and heart failure, the latter managed by a device that restricts my heart rate range. Not whinging as these are things I have under fairly close to optimal control. And it is what it is. But I don’t know how to get past this fatigue. I'm exercising in small doses, increasing strength training (also in small doses) but my zest for life has disappeared. Is this normal? I usually paint, and crochet and garden and cook and read and play my guitar. Not sure where to turn to or whether to just wait it out in hope. I’m either under or overdoing it. Ideas?
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
Bone Scan along with 3yr mammogram and ultrasound
By way of a little background I have been getting pain in my ribs off and on for a couple weeks so I was sent for an xray which didn't reveal much. The pain started on the right side in a rib bone directly under my right breast which had the cancer. The last couple of days the left ribs and muscles are sore. I really felt it yesterday picking up my grandson and my night time i had pandadol and a glass of wine. So today my Doctor requested i get a bone scan. I have arranged this for next Wednesday and I have my annual mammogram and ultrasound on Friday so get all the results together next Saturday 4th February. I am in my third year after diagnosis. Today as well my hubby got home from hospital after cancer was successfully removed from one of his kidneys and he is recovering well and resting. I guess I am unloading here as my husband has his own recovery battle ahead. I am a bit upset and anxious but I am ok. I know all the things to do, keeping busy doing things I like , walking, meditation etc. I know not to jump the gun and this could just be nothing at all. Just need a little support and encouraging words please.Interesting facebook video on 'scanxiety' ....
This Facebook mob (The Recovery Room) put up different videos relating to those with cancer .... Click on the 'Video' section on Facebook to see their other topics. Most are about 5 mins in length. They do have a website but you need to pay to join .... as they say .... "FUN, HONEST and ACCURATE!" The Recovery Room has a library of short, positive, understandable, medically accurate videos about cancer & cancer recovery. Cancer PT, Dr. Leslie Waltke's goal, is to make the world better for people with cancer. This one is on Scanxiety: https://www.facebook.com/lesliewaltkept/videos/291362799813810Scanxiety - does it ever REALLY go away?
Does Scanxiety ever really disappear? I think not. It is 4 years in Nov since my ILC tumours were found, by accident, by my GP - as the rural BreastScreen Bus screens totally missed it ..... TWICE. Rural breastscreen buses do not have 3D mammograms - only 2D ones - and they are unlikely to pick up Invasive Lobular Cancer (that does not present as a 'lump' ....) and any cancer is almost impossible to 'see' in those with Dense Breast Tissue. If you don't know what breast tissue type you have, get your Surgeon/Oncologist to tell you - as Breast Screen NSW refuses to do so. If you are able to pull up a pic of your Mammograms .... you'll actually SEE if you have dense breast tissue, as much of the breast will showing as 'white' (rather than fairly clear) and as cancer also shows up as 'white' ..... the dense breast tissue hides the cancer. What followed was 2 years of anxiety as I had a recall on my first anniversary scans, which luckily, were benign .... but being rural, things all take longer to happen. Altho I had my surgery within days of seeing the surgeon (10 days after my diagnosis on Jan 5th was confirmed) it had taken 2 months to get to the diagnosis, with my biopsy being done between Xmas & New Year. The following year, the biopsy was on Xmas Eve .... so 2 x Christmases/New Years - totally stuffed!! For this reason, I brought my scan dates a month early to October - so that if anything needed doing (ie biopsy) I wouldn't be in the Xmas Rush! SO .... I head north today for my annual Mammogram and Ultrasound (luckily, having the resident specialist breast Cancer Radiographer doing both!) I'll take hubby with me & will probably even take him into the clinic room with me (if allowed) to keep an eye on him as he has mod-severe dementia. Otherwise, I'd need to arrange someone to sit with him, if I left him at home. Up til this morning, I hadn't really 'thought' of the scanxiety .... but then it raised it's ugly head again! grrrr. I am not expecting any adverse results - but with this beast, you just never know! I see my Rad Onc next week, also up north - my 2nd last visit to her - next year being Year 5 since detection. Wish me luck!!Second mammogram post diagnosis year 2
Hi everyone, Yesterday I went for my 2nd mammogram and ultrasound post treatment. I did cry this year or feel that horrible scan anxiety. Horaay! Last year I was a complete mess and had tears flowing as I had my first ultrasound post treatment. This year I was a little nervous but ok. My husband patiently waited for me while I went it. I was there for over 2 hrs and my results were given immediately. I am clear. No evidence of disease. Another Horaay. We celebrated with a glass of bubbles 🥂 after the news at a lovely place on the Brisbane River. It was raining but I didn't even notice because I was so happy with my news.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-dc2m0vBZYofwKC2fZ2oPs8LZdUFaMPql3daLiw7YitLk27c34CanCope - an online program to help those with Cancer, cope both emotionally and physically
Woohoo!! Are you feeling down and depressed with your 'post BC body & mind'? Would you like to access a Psychologist but not able to? Monash University is running 2 programs over 12 months - for people with cancer, to help cope both mentally & physically with a cancer diagnosis & treatments. This program gives EVERYONE access to quality psychological help. Tell your friends who have had other cancers too, not only those of us with BC. There are 2 modules - Mind and Physical - and both are FREE!! Matter of fact you will even be sent some $$ for taking part! The CanCope team are a group of researchers and mental health professionals with an interest in cancer. https://cancope.weebly.com The two CanCope programs The two programs are CanCope Mind and CanCope Lifestyle. If you take part, you will allocated to one of the two programs (however, by the end, you will gain access to the content from both programs!) FAQ here: https://cancope.weebly.com/faq.html You can read reviews on the programs here: https://cancope.weebly.com/reviews.html Or you can just contact the chief psychologist directly (see email address on the 'flyer' or the 'explanation sheet', Page 1) I think this will be invaluable for many of our members who normally can't access a psychologist ...... so don't be shy - give it a go! ANYONE can do the programs, so long as their 'active treatment' has been completed. Even after this program has finished, chances are they will be replaced by other similar programs.
Scanxiety management
Hi All, Back again for sage advice and wisdom. I have been doing okay. Survived my first term of teaching after 6 months away. The new issue is discovering how what were once routine procedures that didn’t bother me, now have me crying like a baby and hyperventilating. Scans I had last year during my BC treatment discovered polyps on my lungs - which was discussed at my first presurgical BC appointment last August but I conveniently forgot so had a total meltdown when the letter arrived in January announcing I was due for a lung scan 😳 so I went in for the CT and was completely shocked when , as the machine started up I just burst into tears. Got through it, told myself I was okay. Results came back reasonably clear. But (yay) they found polyps on my thyroid. Same issue during the ultrasound. Crying (very silently) trying desperately to reassure myself everything was ok. So next week I have to go in for a guided needle biopsy on my thyroid polyps ( oh fucking joy) and I know I’m going to have trouble because my phantom boob still recoils at the memory of the damn painful core biopsy last July. And there’ll be the crying which just happens now. Beyond my control. I’m considering ( in lieu of getting rolling drunk) taking a travacalm before I go in. Not sure I have time to see a doctor for a script for anything stronger. Any advice? 😬. Before you say grounding techniques... things you can see , hear, etc.... everything reminded me I was in a hospital!!! Which didn’t help a bit... just triggered me more!!! 🤣🤫 maybe I’ll put a high vis coat on my dog.... take him in as my support 🧐
New boob abnormality
Hi all, I first want to say how grateful I am to everyone for sharing their stories here, they often help when I'm struggling. That said I'm finding things particularly hard at the moment. I was originally diagnosed oct 2019, her2+ er-, with large lump and lymph node involvement. I had ac then Taxol, 2 lumpectomys to get clearance and then radiation along with herceptin until Jan this year. I had a good response to treatment (pathological complete response). But this year I'm finding it so much harder! I was okish last year with a few little hiccups but this year I find myself so much more depressed with life and I don't get why. My son who is 7 has developed quite severe anxiety especially when it comes to me this year and it just seems to be getting worse no matter how much support we get him and how much energy I pour in to him. And now this week, I reported to my breast care nurse some tenderness I had in my boob. I had told the surgeon about it on Nov when I saw him but he just said it was radiation side effects. This week the nurse felt my breast and said it was probably just scar tissue that is pulling now I am doing more exercise but recommended an ultrasound. The ultrasound showed some abnormality in the ducts near my scar tissue so now they want to biopsy which I'm having done tomorrow. I'm trying to stay calm and think that it's all fine until I know otherwise but I'm finding it hard. I don't know how my young kids will cope if it is the worst? My son is already struggling so much. I guess I just am hoping people can tell me good news stories of when they got a biopsy post cancer and it turned out to be ok.
