67 Male Metastatic Breast Cancer
Good Morning My 67 year old dad was diagnosed at the end of February with Her2 negative breast cancer. He had a mastectomy of the left breast and sentinel lymph nodes removal in March. A week later he had a second surgery to do axilla node removal as 3 of the 5 nodes removed were positive for cancer from the first surgery. The second surgery removed a further 17 nodes all were negative. He had a PET CT scan just before first surgery which came back all clear except for some haemangioma which was not mentioned to us at the time. He was classed as a 2B stage and referred for chemo, radiation and hormone therapy. Things looked positive. At the first appointment with the medical oncologist she booked dad in for chemo, but also mentioned that the PET scan he had done previously showed an area in the T 1 of his spine that should be investigated further as it could be a possible metastasis or a haemangioma. No idea why the breast surgeon missed that in the PET report. Dad did a MRI which unfortunately showed possible metastasis in his T1, T6, T9 and L1. He then had a bone scan which showed same results along with 2 small spots on his ribs. Oncologist has canceled chemotherapy and radiation before it’s even started and put dad on tamoxifen and abemaciclib. He will start denosumab bone injections in about 2 months as he had to pull 2 teeth out to be able to get dental clearance for them. He did a bone biopsy of his L1 yesterday even though oncologist was adamant he didn’t need to do it as the metastasis is confirmed with the scans. Results are pending. His bloodwork is ‘normal’. No radiation has been recommended for now as dad has no pain. The last 2 months has been an emotional rollercoaster. There is very little information out there on male breast cancer. We’re unsure why the PET scan was cleared by the breast surgeon but it turns out there is actually metastatic disease on his spine and ribs. We’re not sure the wait and see approach is ok with us. Do most metastatic breast cancer patients receive chemo and radiation or just hormone blocking therapy. Also not happy bone injections are delayed for 2 months but nothing is replacing it for now. We’re tempted to see another oncologist for a second opinion on treatment. What are your thoughts on dad’s situation?
Capecitibane
Hi there I now have secondary breast lung cancer nodules. My oncologist has trialed me on Pablociclib and Abemaciclib however nodules have continued to grow and increase in number. They are now suggesting a few other options, one of them being Capecitibane. Again symptoms sound awful, especially hand foot syndrome 😞 I would appreciate any accounts of personal experiences with symptoms and results after use. Thank you in advance 🙏🫶
New to the Team- not exactly happy about it
Hi, 03Dec had a lump checked- invasive lobular cancer, left breast. 09Dec- MRI and spot detected right breast followed by biopsy- same cancer although non-palpable. 19Dec bilateral partial masectomy plus sentinel lymph nodes, and conservative reconstruction. 04JAN results back- MBC!!!!!....PETscan tomorrow. I feel like I am standing in a well listening to grenades go off. I don't know how I got here although I don't think that matters. I am terrified for the future and how short it may be, but then I see some of you with MBC post 6 years,or 9 years, diagnosis and I wonder if that could be me. I used to be a microbiologist before I moved into law (these days I manage risk-imagine managing risk for a living and getting this diagnosis!). I read about the science which is ever changing and getting better at longevity and quality of life and the personalised approaches available for my situation (whatever that turns out to be) but I don't know when the sadness and fear will stop or if this is my life now. I know I am not dying this week or next week or even next year, but the overwhelming feeling is that I might, and so I have organised a council pick up and getting rid of all my furniture that isn't essential, and giving away or selling my clothes BCS I can't see which way is forward, or if there even is forward. I contacted my BCN today and asked for a psychologist BCS I need something to hold onto and this diagnosis vortex is chaotic.
From bad to worse, but getting better.
I remember writing in these forums when I first had early breast cancer. I’m back! I was diagnosed MBC last year in March. It’s been a crazy roller coaster! My original cancer was triple positive IBC. It came back in my liver only. It was riddled with them and some were huge. And just six weeks after my reconstruction, when I was “putting cancer behind me”. Anyway I had an amazing response to 3 months of THP and a holiday in Greece last year and they vanished. There was an unfortunate incident involving a hot water bottle that gave me third degree burns to my reconstructed breast. I also had to get a seroma drained ten times (it’s still there). In November I had two small tumours come back, progressing after just six weeks on HP. I went to USA and accessed a new treatment called histotripsy that blows up tumours using only sound. We blew them up and they were gone and I moved onto Enhertu. After six months we saw new progression so I went back to USA in June and blew up the biggest two, which had grown so fast (to 3cm from nothing in two months since a clear MRI). I still have a few in there but hopefully less aggressive ones. Now I am facing a situation where I have discovered I was not offered or given the first line treatment after chemotherapy, and now, I am not entitled to ever receive it on the PBS. I am self funding Perjeta for now but hoping my appeals to the PBS people and to others might help in getting it subsidised or under compassionate access. I feel I am being penalised for my oncologists “mistake”. The truth is I think he did it (called my cancer HER2 only and treated it as such to give me the best chance to access T-Dxd early in the piece I have also now been advised to consider Palbociclib based on the Patina results but this is also not on the PBS for my type of cancer. So somehow on top of the 150k I have spent on blowing up tumours I am expected to find another 100k per year for medicine? Or just accept inferior treatments? Life with MBC can be hard. This week I got an MRI that was interpreted as major progression. I cried I ran off to the hospital to fill the palbo prescription then came home and realised the lesions (extremely suspicious for metastatic progression) were actually the three treatment zones I had targeted (phew). So there are only babies that will hopefully now start shrinking from standard of care 15 months late and largely on me. I’m considering going to India for cheap palbo or back to California for more liver bombing. I never knew cancer would turn me into a jetsetter. I am also a mother of two girls 10 and 13. Keen to hang around as long as I can. Well that was a long story! I remember I got some good support here when I was going through it the first time. I’d love to meet others in the same boat in Melbourne.
How do you know if its progressing?
Hi Everyone, just a bit of a dumb question... I'm Stage 4 De Novo with bone/spine mets. I've been on Letrozole/Ribociclib/Denosumab for about 7 months now. I'm having restaging scans every 3 months... The first set of restaging scans showed "significant improvement" in my breast tumour and no further commentary re lymph node or spine mets. I'm about to go in for my 2nd restaging scans in about 2 weeks time. I don't feel much different than before I was diagnosed (except from the side effects of these drugs). So far, so good :) I'm just wondering, aside from results that may show on scans/blood tests, do you feel any different when the cancer starts to progress please? Should I be looking out for something? Pain? Or something else? What else have people encountered please? Any experiences shared would be greatly appreciated. Cheers
Starting Xeloda and would appreciate any insight and shared experiences / success stories please :-)
This is my first post to the on-line Network although I frequently read the wonderful and raw posts you all share that unite us and provide strength and inspiration! I was diagnosed 3 years ago with liver mets and had my ovaries removed and started femara.....which has been successful up until now. Liver mets now count 20 with 19 only 1cm and unsure whether they are all active but one at 5.5cm which is active hence my oncologist has opted to start me on Xeloda and that treatment began today. I am taking 5 x 500mg daily .....two weeks on and one week off. I visit him in 3 weeks for review of how I am responding. He is confident I will do well. I feel blessed and like I am living the dream given that I am 3.3 years down the track albeit I am using lots of energy at the moment to stay optimistic and positive given I was hoping for a liver dissection last week which the surgeon declined to do upon discovery of multiple lesions including new ones post my original diagnosis. I have a 22yo son (only child) who lives with me (still at Uni) and I am a single mum. He is my everything. I am not afraid for me....but I am scared for him. I know this emotion will settle but would appreciate any feedback members may have as keen to give the Xeloda a very good run and hoping symptoms are manageable so as I can show him daily strength and continued capacity to be as well as possible. Keen for anything anyone may be prepared to share re their own experience in terms of symptoms, management and success. Thank you my cancer sisters. Tracey (aka Traleee) xx
Olivia Newton John now has metastatic cancer
Just read this on facebook and i've got to say i'm very saddened by this news how dare cancer come back after so so many years. For Immediate Release OLIVIA NEWTON-JOHN POSTPONES JUNE CONCERT DATES May 30, 2017 - Las Vegas, NV — Olivia Newton-John is reluctantly postponing her June U.S. and Canadian concert tour dates. The back pain that initially caused her to postpone the first half of her concert tour, has turned out to be breast cancer that has metastasized to the sacrum. In addition to natural wellness therapies, Olivia will complete a short course of photon radiation therapy and is confident she will be back later in the year, better than ever, to celebrate her shows. "I decided on my direction of therapies after consultation with my doctors and natural therapists and the medical team at my Olivia Newton-John Cancer Wellness and Research Centre in Melbourne, Australia,” says Olivia Newton-John. There will be no interview requests accepted at this time as Olivia’s focus is on her treatment and healing. Ticket buyers for the upcoming concerts should contact venues directly about refunds. Rescheduled concert dates will be posted at OliviaNewton-John.com in the coming weeks. # # # ##
Update on stable bone mets but increased tumour markers - Part 2
Hi all, You may recall I posted yesterday about my stable bone scan but rising tm's and fearful of possibility of going onto chemo. Today I went to see my medical oncologist and she did a little "happy dance" in her chair. When I asked her about the rise in tumour markers - up from 71 to 143 in 3 months, she advised that tm's are not viewed in isolation. White cell count, kidney function, vitamin D, calcium, haemoglobin, protein levels were all good. Was also a timely reminder of where I was in January with tm's - 941. Given that the blood test was taken 2 days before my sore throat and mouth ulcers that I was affected by last week, possibly had more to do with it. If I had new or persistent bone pain, less than favourable bone scan and generally poor blood results it might be an issue. Given that I look well, energy levels are ok, bone pain is manageable - she is happy. "Have a great Christmas and I will see you next year" were her passing words ! Thanks to all those for your support. Sheryl :) <3
Feeling scared and uncertain
3 years ago I was diagnosed with stage 3 breast cancer and underwent a right mastectomy, chemo radiotherapy and then started on tamoxifen. Whilst always living in the shadow of it returning, I got on with life, saw my stepson marry, my son become a father and my daughter is just completing year 12. I thought I was ok. Then 5 weeks ago my world crumbled around me when I discovered the cancer had returned in my scar tissue and I have now been told I have advanced breast cancer. I consider myself lucky it hasn't spread to my bones or organs but I am terrified that it will. My oncologist is putting me on levistol along with a new clinical trial which she says has amazing results in the USA. She sounds very optimistic and assures me that if my cancer doesn't respond to these drugs there are plenty of others. So why do I feel so scared this time round? I guess I am now facing my own mortality and that scares me. I am only 52 and have so much more living to do. I understand that many women live with secondaries for years, I would love to hear from you and how you coped with this news. I am a positive person, I have to keep fighting as I don't fancy the alternative, but realistically I feel I have just been handed a death sentence. I am sorry if this sounds blunt, but this is how I am feeling right now. Any guidance or words of support would be greatly appreciated. Also, I live in Perth so if anyone can recommend any good support groups that may be a help to me. Thank you xx
Shades of Grey
Now I haven't actually read shades of grey but I am sure my past week, while a feel a week in shades of grey was not as "riveting". Once of the things that stands out to me since I began this journey on 22nd February 2011 is how grey everything in Breast Cancer is. I expected medicine, science to be black and white. You diagnose, you cut it out, your medicate and you are cured - that's what happens isn't it? The Dr knows all because the science backs it up. How wrong I was. I would be a wealthy women if I had a gold coin for everytime I have heard the answer "We don't know" , "The studies are not clear on that", "We don't have that information", "We don't understand why..." This week I had a new experience in the shades of grey in dealing with my cancer. I had progress scans - 12 weeks into trial - i have them every 6 weeks. My first lot at 6 weeks showed stable disease (i.e. the cancer is pretty much the same - minimal growth, no new disease) - in fact one of my mediastinal lymph nodes had significantly reduced during the 6 weeks. There is a process when you are on a trial - they identify target lesions. Target lesions should meet RECIST criteria and be at least 1cm preferably 2cm in size. Fortunately for me my lesions have always been small - the issue though for me is that I have "innumerable" lesions in my lungs - effectively so many nodules that they don't bother counting them. So, they have 2 target lesions for the trial - both lung nodules. (I have lung disease and some mediastinal nodes that have been inflamed). So, the first report is done by a radiologist who has a quick 10 minute look and writes a short summary. I had seen the films and thought they looked bad, left a message for my private oncologist - she returns my call at night saying it would appear I hae progression, the radiologist is saying that there is new disease and the nodule he reports on has grown 20-25%. I then spend the next few days dealing with this news, working out next steps and go to my appointment with my trial oncologist who says he has looked at the films, the trial radiologist has done the measurements and within the trial criteria my disease is stable - the growth of the target nodules is around 15%. He meticulously goes through the films with me, pointing out that the new scans are done on a new machine with higher resolution and he does not beieve the progression is significant. He cannot find sign of new disease. I had asked for a third opinion from the radiologist I trust the most, the one who knows my lungs back to front. He reports differently again commenting and measuring the 6 lesions that have changed the most - all within the vicinity of 20-25% but numerous are unchanged or marginal increase. So 3 radiologists, three differing opinions. This information is what I need to make a decision. If I decide to stop the drug I can never get it again. Have I got full benefit of the drug yet? Am I a sow responder? My trial oncologist was honest - he would like to see some shrinkage by now and it seems I am slowly progressing. Add increasing tumor marker numers that are unreliable and we have a mixed up story. So, shades of grey - I decided to stay on the trial - rescan in 4 weeks - wonder what we will see then - black, white, grey? Amandax