Further Spread
Hi, I was diagnosed with breast cancer in 2008 & underwent mastectomy & axillary clearance, which showed spread to lymph nodes, so had the chemotherapy & radiation regime. I was proud of how well I managed, still holding down my job & not having many of the side effects. Though did go through a rough patch with Taxotere, which got changed to Taxol. No radiation burns thanks to Vegesorb (vegetable based sorbelene as normal stuff is petroleum based) & I am very fair, so again, happy. Continued on Tamoxifen. Then in 2015, went to my GP with a little wheeze, which I put down to adult onset asthma, being the only female in my entire family not to have suffered. But no, on a routine check up with the oncologist, lung cancer was found, multiple nodes. Fortunately was able to start a round of hormone tablets, then as it continued to grow, medication changed & Groselin injections added. All going good. Finally decided to take a holiday & tick something off the bucket list. Came back with a cough & was diagnosed with pneumonia & a virus. Cough continued despite all sorts of treatments & medications. Another scan, this time the cancer had grown & more areas in lungs. To be sure we weren't dealing with another type of cancer and still related to BRCA spread, more tests. Yay, low & behold I now have the starting of bone cancer. Am feeling a little woe-is-me at the moment & full of questions & self doubt & persecution. My oncologist & team is fantastic, but as this latest diagnosis is just days old, I am still digesting & processing. Is anyone else going through similar & how do you find your happy place again? I feel everytime I look forward, the cancer makes me stop again. I did read that there are specific exercise programs for bone cancer pts, does anyone know of anyone dealing with that in the Cairns FNQ region? Thanks for listening
Anyone else on Herceptin & Perjeta indefinately???
Hi Ladies Hope everyone is doing well, it has been ages since I last visited. I was wondering if there are many out there who are undergoing herceptin and perjeta treatment every 3 weeks with no end date like myself. I have now been doing it since about April 2016 and while my side effects are fairly minimal; I have started thinking about what I might expect if things continue the same. I imagine the build up in my system will increase the side effects, so far my heart function is fine....but wonder if it will stay that way. Most people I have talked with only stay on this treatment for the 12months, but as mine travelled into my spine the oncologist says this treatment will remain as it appears I am "responding to treatment". Thanks, KariChest looking like it has caved after double mastectomy
hi everyone. Just wondering if anyone has experienced this? for the last few days I have been feeling a "tugging" sore feeling over my mastectomy scar (double mastectomy 18 months ago, no chemo or radio). I checked the chest and I have an area beneath the scar on the chest wall that looks to have sunken. Any ideas what this could be?
Is anyone taking Zoladex injection and Letrozole tablet?
hi, I recently been diagnosed stage 4 breast cancer and the cancer cells already spread to several spots in the bones. The surgeon and oncologist advise that surgery and chemo are not suitable for my case as I'm HER2-, ER+ & PR+ So oncologist gave me the Zoladex injection monthly and Letrozole tablet daily. He said that it might help to control the cancer not to growth or spread any further, but no way to fully cure. Jut wonder anyone have the similar case as me or having the same treatment? Would this hormonal therapy work? Anyone can share the experience? many thanks
Mum recently diagnosed
Hey all, I've joined this forum in the hopes of connecting with others. My mum is 69, diagnosed with breast cancer 2 months ago and now has been diagnosed with metastatic BC in spine and possibly lungs (they arent 100% sure on the lungs) as the spots are so small. Shes started oral chemo and hormone therapy today and will see the oncologist again in 5 weeks. She seems to be handling it well so far but she's not feeling sick or anything yet so i guess time will tell. Im sure its going to be a long journey and I'll be here to support her every step of the way. I currently live with my mum so im glad Im here to be there for her. I just wanted to pop in and say hi.
Adjusting to bad news, staying hopeful, changing habits
Hi, I am a 44 year old mother of two girls, 3 and 7. Was diagnosed with breast cancer on Tuesday evening after a mammogram and ultrasound in the morning. On Wednesday I saw a specialist who sent me for biopsies and scans. On Thursday afternoon I learnt that I have HER2 positive BC in my right breast (3x3cm with two smaller tumours nearby), and one lymph node biopsied because it was enlarged was also cancerous. A lump on the left was benign. It does not appear to have spread to bones, pelvis, liver etc however there were two 5mm nodules in my lung that might be BC. I am hoping they are something else but have to be prepared in case the cancer already is stage 4. I remember the doctor said it was grade 2-3 but not sure if that is the same thing as stage 2-3. I have somehow lost the reports, so I can't look over the details until they are mailed but I have an appointment on Wednesday with a different specialist to plan treatment. I am glad that things are moving quickly but am still reeling from the news and wish the appointment was sooner. I think I will be having preadjuvant chemo and/or targeted treatment, followed by a mastectomy of the right breast in several months (with optional rebuild), however I have not met with the oncologist so am not sure what to expect. I should have gotten to a GP weeks ago as I had noticed hardness over many months (which I had thought was related to it being dominant for milk production) and had a sore breast in early July, however because I was breastfeeding and fairly ignorant of BC I mistook the symptoms including a swollen lymph node for mastitis. Only when all pain went way and I noticed the boob seemed bigger and misshapen with a prominent lump did I get myself to a doctor. Waited a week and a half for the scan that showed it was as suspected a malignant carcinoma. Strange thing is it only started hurting again after I learned what it was. I don't know much yet but am trying to learn a bit without scaring myself too much or googling into the night. My youngest daughter has weaned herself, and on the night of the diagnosis she accepted bedtime without breast, understanding that I have sick boobies and the doctor said we should stop. In the middle of the night she was desperate to breastfeed, and I allowed this briefly. That is the last time I fed her, and she has been proud of herself for giving it up but has wanted to kiss it and hug it today. Next move is for me to give up smoking, a bad habit of mine for many years off and on, which is not easy when it has been a response to stress and I have been quite stressed at times. It must be done, as I understand that it increases the risk of metastasis (if it has not already happened) and I wouldn't want to invite another cancer along right now. But I am trying to be gentle with myself when I occasionally light them only to put them out shortly thereafter. I hope to eliminate this habit fully by Wednesday. I have to clean up my diet and prepare for the treatment. I was a lifelong vegetarian until my early thirties however I have eaten a tiny bit of fish in the past ten years. I eat lots of fruit and veg. However I do have too many sugary things and processed stuff so I need to cut the crap out of the shopping list. Emotionally I have been struggling a bit and I should arrange some counselling to work through my feelings. My mother and friends have been amazing, my husband has been a good support but doesn't like to see me crying, which I think is just a normal thing from time to time in such a circumstance. I am being open and honest with the kids and have been giving them lots of love and sweetness. Honestly I am sometimes very scared but I am trying to be strong for myself and for everyone around me. Sending love and understanding to others with BC, and those who have recently been diagnosed, it's pretty tough to take, huh?Fragility
I just wanted to share with you all that today is a sad day for my family. We have learnt that cousin, not too much older than I, has lost her battle. Primary was Breast cancer but in time her body rebelled; the duodenum was where it was detected. She is now at peace. Just a reminder how fragile we all are. Today is a reminder for me to take stock around me, be thankful that mine is under control and not to become distressed (scanxiety) over the constant tests. My next round is 30 June. Take care all xx
Duration of MBC?
Hi ladies - hope this question isn't too confronting, but I'd love to know how many years some of you have gone with "mets"??? One thing I struggled with at the outset was the "how long" question. I was diagnosed in Feb this year. The first oncologist mumbled about 10 years.... Obviously they don't know, and from what I gleaned last week at the seminar, there is concern when there is progression to the liver because that is where drugs are metabolised. Interesting because previously my concern was brain. Of course that being said, women respond differently and one of the first ladies I was put in touch with has gone 16 yrs post diagnosis - having lobular oestrogen positive breast cancer like me, and it was in bones AND liver - but stable and has been managed well over the years. Also she has travelled extensively. So, the 64 dollar question is to know how many others are in this 'exclusive club'??? Hope you don't mind me expressing it that way?! best wishes, Elaine
I’m Not Cancer but Cancer is a Part of Me
I have been living with cancer now for nearly 10 years. It would be stupid of me to say that cancer has not changed me over the years. My illness is terminal but treatable and I still have a very good quality of life. I now accept cancer as part of my being. It has certainly affected me physically and mentally. During my journey there have been 8 events that profoundly affected and changed me. Having said this, I do believe I have never lost myself. “Cancer” has challenged who I am but through it there has been a lot of self-discovery along the way. Some of it good some of it bad. My circumstance has not allowed me to forget “cancer". Living with cancer, you overcome one hurdle, feel good for a while, then it’s back again. Because of this, I have lost my personal sense of safety and health. This year my intention was to take some of that back by undertaking gym work under the supervision of an exercise physiologist, which I enjoyed. Then was faced with another hurdle. Through long term use of bone density drugs, my femur shafts become brittle and fractured. This resulted in having femoral rods inserted in each femur. Following my operations, I refractured twice so this “hurdle” has lasted since May! Easily my biggest test living with cancer. None of this is character building, it tests your resilience. Thankfully I am turning the corner. Ok you may say oh poor Karen, but you always meet someone worse off than you. My gym sessions were at a Rehab facility where you see people severely traumatised. I admire their courage and determination to gain some mobility. Because of cancer I now have bucket loads of self-discovery, teaching me to be more tolerant, slow down, be unselfish and compassionate. I am still working on “me” time. I think this is difficult for women. I have greater compassion for people facing illness and adversity, particularly those who do not have the same level of determination, positive attitude and fighting spirit which I seem to inherently have. There is one aspect of my behavior which I’m not proud of. My life goal has always been to be gracious and seek the high road, but at times my actions prove that I am not quite there. Truthfully, I work hard to ensure that I don’t look like a cancer patient or inflict my predicament on those around me. After all, it’s no one’s fault that I have metastatic breast cancer. At times I have made some pretty bad jokes about dying. I have often been flippant with my husband about my mortality not thinking how this affects him. I have jokingly talked about my mortality to my friends in a non-sensitive way. I now make a conscious effort to not do this. It upsets them. I read this quote somewhere and it resonates with me “You are not dying from cancer; you are living with it!” It’s so right, and I have embraced that sentiment. For many years I saw my career as being a big part of my identity. As my disease wasn’t going away, in the end I was treated differently which affected me emotionally and financially. What had been my normal lifestyle was turned up-side-down. Myself and my family had to adjust to this big change as I was the major income earner. This has and still does test our resilience. Technology is keeping us living well despite our underlying disease, yet we are finding we cannot work. I would like to see a flexible workforce for people who are living well with cancer who can work are encouraged to stay working in some capacity rather than eat away at their life savings and ultimately find themselves prematurely on a pension. Now I focus on my health and my mindset. I have been an excellent advocate for myself and have actively participated in the management of my treatment. I am a BCNA Consumer Representative and have enjoyed the assignments that have come my way. By nature, I am an optimistic person, I am very thankful for my blessings. I have two wonderful adult boys and a supportive husband, sister and extended family. I also have great mates that are a shining beacon. When you are faced with a terminal illness, its these relationships that are your focal point. Bricks and mortar and material things have become irrelevant which have been replaced by experiences shared with family and friends. I know it sounds clichéd, but I take nothing of granted and enjoy every day. You never know what curve balls life is going to throw at you, and it's how you deal with them that defines who you are. For now, I am living with cancer. It is my hope that we obliterate it, but I am not wasting time worrying about it. Anyone that has cancer knows that life goes on and it’s up to you to go with it. Karen Cowley Cancer Lifer for 10 years
Immunotherapy for er+pr+ HER2-
it's wonderful to see that there are trials for triple negative metastatic bc. Are there trials for er+pr+ HER2- happening here at all? I have just returned from the Hallwang Clinic in Germany where I was given the GP2 vaccine as the Clinic tested my tumour which they sourced from Australia and I tested positive for HLA antibodies and this made me eligible for the vaccine, which is both used for HER2- and HER2+ bc. I have bone mets and am on Faslodex and Xgeva, both of which are recommended with the GP2 vaccine. It's interesting too that in Germany I am slightly HER2+ but here I'm HER2-, just different testing, but makes me think that really no one knows for sure. I'm hoping that the GP2 works as I'm NED in my organs, but have bone mets. It is like having my own immunotherapy trial, wish HLA testing was available to everyone here.
