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Re: what to do??
Hey Cate, Just wondering if the rash has gotten worse since starting Xeloda & that the extreme heat you are experiencing is also something new ? Given that you have had this rash since Christmas, have you noticed that the symptoms/rash/side effects are worsening ? Yes, hand & foot syndrome falsely leads us to believe hand & foot only !!! As Xeloda is tablet form, I guess it is prescribed from your oncologist directly & that the oncology dept where you are having treatment could be a go-to option is not an option ? @Cate64, I am so sorry that you are having so much grief here. Perhaps some of our lovely admin ladies could provide some help here (or Cancer Council) ?? Big hugs xxxRe: When to have your ovaries removed
Hi there all - thought I would share my experience. After early bc diagnosis in 2003 (partial mastectomy; chemo + rads), I had a recurrence in 2007 & had a full mastectomy. For a couple of years prior, I had some occasional generalised pain so went to my ob/gyn who advised that it was possibly a good idea to have the ovaries removed given the recurrence. Again, as said previously, 1 less area for it to spread to. In 2008, I had the same procedure as @Nikkid but also had my uterus removed so recovery a little bit longer but all laparoscopically & in hospital a few days. Was unable to drive for a few weeks and the "referred pain" in the shoulder was horrendous (from the gas). Also felt like I had been in a "smash-up derby" truck expo ! The follow up visit proved it was a wise move - just like @nikkid I also got some graphic photos which looked like the crater of the moon ! In the words of the ob/gyn "they were a bit "lumpy", glad I took them out & pathology all good". Prior to this I was peri-menopausal for several years following chemo + I was taking Tamoxifen. Post surgery, full on into menopause with all the delightful symptoms + on Arimidex. Fast forward to 2015 and secondary bc in the bones. Well, the little blighter did show up somewhere else. I have not been tested although my Mum was diagnosed with bc after me. @fairydust I wish you the best of luck with whatever choice you make. Sometimes you simply need your body to heal and recuperate & take a temporary break from the endless doctor's appointments. Best wishes, Sheryl :)1View0likes0CommentsRe: Nads - needing some encouragement
Hi there @Nads - is today your last rad day ?? If so, woo hoo. It is amazing that when the end is in sight that it seems like an interminable amount of time has elapsed since you felt remotely "well" and not sore, blistered, exhausted and just battered and bruised. I hope that with the end of this week that the painful sores and blisters will slowly heal and allow your body to become rejuvenated. Best wishes, Sheryl xx6Views0likes0CommentsRe: Feeling lonely
Hi there @Lillan67 - whether you were having a moment or not - you are allowed to - give yourself permission and you don't even need an excuse. Some days are easier than others and some days you feel so overwhelmed by the smallest thing and other days you can climb mountains (depending on how bad those bony mets are, right ?). As all our lovely ladies have shared we have had similar experiences. Friends/family that we think that we can rely on seem to vanish and yet others are a bright, beautiful ray of sunshine in our lives who make us and our families feel important. I have often quoted this on the forum "If people all of a sudden can't cope with your diagnosis; become strangers; disappear into thin air; send random or no messages at all - that is their problem and don't make it yours". You and your family have enough to deal with (and being like most Mum's you want to be able to feel as though you are contributing to the house when normally you just do stuff on auto pilot !). @Fairydust - have you secretly become part of my husband's family ? Since my diagnosis 18 months ago with secondary bc, my in-laws (parents) have come to Sydney once (they live 3 1/2 hours away) and that was for a specialists appointment in Sydney. My brother-in-law has also been to Sydney several times during that period - doing stuff with his kids; taking them to Luna Park; beach - not once has he called in to check if we will be home). He has my mobile # - he sends me photo's of his kids - not once as he just sent a text - "How are you doing?". Or simply for my in-laws to give my husband the support he desperately needs. It is heartbreaking for me to see that my wonderful husband receives more support from our fabulous friends than his own flesh and blood. Lillian - I hope the girls play date goes well and sets up some ongoing contact for you and your family and the support you all need and deserve. Big hugs to you, Sheryl xxx2Views0likes0CommentsRe: What NOT to say to people affected with breast cancer
Ladies a friend of mine (who also has metastatic breast cancer - we have been mates for 30 years) shared this on Facebook over the w/e. See link below - http://https//www.theguardian.com/commentisfree/2016/mar/26/do-not-tell-cancer-patients-cures-they-could-be-doing I am sure there will be many familiar sentiments that each of us have come across. Of course there are the favourites I am sure we have all heard - "Is there family history of breast cancer" ('cos only women with a family history get it, right ? and so I had a choice in who my parents were anyway ?) "Try yoga; meditation; organic food; eliminating sugar; eliminating meat; only eat greens; juice everything" "I know a friend/work colleague; neighbour who had breast cancer & she is fine now" "I couldn't do what you are doing ?" - like I have a choice ? "Can we bring our newborn baby to see you because you are having chemo and you might poison him with the chemicals" - from my husband's brother (my in-laws wonder why I have a distant relationship with them !!!) Over the last 13 years I thought I had heard them all but, nope, I still get new ones .... "Try asparagus, it cures cancer" "There is a doctor who operates and cures lymphedema" (yeah - not curable - and most programs will not even considering you if you have secondary bc) "How long do you have ?" - not even mention of prognosis and this came from an upstart who I was training to take over my job so that I could ease into part time work ! So, incredibly frustrating but it simply makes me more determined to grit my teeth and just get on with it. @Zoffiel - just love your response to the person enquiring about your prognosis !!! :)2Views0likes0CommentsRe: Tomorrow is day
Hi @Bowie - there is nothing that anybody can say or do that will help erase your shock, pain, confusion, anxiety & fears. The only thing that is normal about a bc diagnosis is that there is no normal at all - what & how you are feeling is perfectly ok for you. Sure, you may not feel OK and feel as though you can't cope & don't have the strength. Try not to think about tomorrow, next week, next month. The best piece of advice that I was given was to breathe - long, deep breaths. At least 10 of them. I found myself doing this after diagnosis; before surgery; before scans. I still do it now - at night; walking along a corridor at work. Bowie we are not warriors - I can assure you. Like your Mum I have had a bc diagnosis 3 times and it shakes you to the core each and every time. It does not get any easier. In some respects it is out of our control but you can gain some control back by speaking about it - you said you did not develop a good rapport with your breast care nurse. Perhaps you can ring BCNA on 1800 500 258 and ask to have some telephone counselling. I did and found that it made a difference and I was recommended to contact and speak with a psycho-oncologist (somebody who specifically deals with patients or loved ones who have been diagnosed with cancer). I had about 6 one-on-one sessions. You may be able to get information through the Cancer Care Centre where you are having your treatment. Also I found to ask lots of questions whenever I had an appointment. Before each appointment I would write down a list of questions. I would only google certain sites - this site and Cancer Council. My very best wishes to you & virtual hug for tomorrow. Sheryl <32Views0likes0CommentsRe: PET Scan costs?
Hi @Lisa50, I can advise you that the CT scan came up with the results that we already knew - I have secondary bc in the bones. The bony mets that showed up on the CT scan were in those areas we already know exist. A PET scan was recommended as there was a "lesion" in my lung after a lung infection that had me admitted to hospital 12 months ago. Lesion size & shape unchanged in that time. I was advised that a PET scan would show up any "hot spots" (bit like a bone scan but more comprehensive as it shows organs etc). The PET scan did not show us anything new/positive that was not shown on the CT scan that we already know about. However, in hindsight it is one thing that has been ticked off the list of scans for comparison and measure. All the best Lisa with your upcoming appointments.8Views0likes0CommentsRe: PET Scan costs?
Hi @Lisa50 - I had a PET scan on 10th March. Nor sure what state you are in but the only places in "Sydney" (that is greater metro area too, I believe) that offer a PET scan are hospitals RPA; Liverpool and St George. I had mine @ St George and I was out of pocket $600. Yes, B CA is not covered !24Views0likes0Comments
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Living with metastatic breast cancer
This is group for people living with metastatic breast cancer (also called stage 4, secondary or advanced breast cancer). This is a safe, understanding space to connect with others who truly get what it’s like to hear the words that you are living with metastatic breast cancer. Together, we offer each other strength, compassion, hope encouragement and a place to talk openly—whatever you're facing.
