Breast Cancer Now Forum

Hi, I was diagnosed last year with mets to a femur, lung and liver, I'm HER2 positive. Earlier this year I was experiencing on off tinnitus in left ear so I mentioned it to oncologist. He thought it could be caused by the chemo I had last year, asked me if i wanted a head CT to see if there was any damage to ear drum, or small bones in ear. Totally unexpected it came back with enhancements in the brain so went on to have brain MRI. Turns out I have multiple mets throughout the brain but none that look responsible for the tinnitus so it's likely that is caused by chemo or other meds so the lesions in brain have been found by accident really. I had no symptoms prior to this. Oncologist would have expected my balance to at least have been affected as many in my cerebellum, but no issues.  I wish I'd pushed last year for full scan as like you I was only having the abdomen, thorax CTs. With HER2 positive, brain involvement is high risk but they don't do the head scan unless having symptoms.  ... View more

Hi Sam Sorry that you find yourself here. It sounds like you've had a bit of a rollercoaster leading up to this diagnosis which like you say has just floored you, as it did myself when I was diagnosed with mets in april not long after first lockdown began. My primary diagnosis of grade 3 triple positive invasive ductal BC was in 2015 and so I'd been in remission for nearly 5 years and was well and truly putting it behind me. A niggle in my back sent me to GP, I really didn't think it would be sinister. A bone scan showed hotspot on 1 rib and left hip/femur so a CT was ordered and I was devastated to be told I not only had a recurrence in those bones but also my liver and right lung, well I was reeling! I was 39, recently turned 40. In these short months since my diagnosis I have come across loads of ladies who have lived years and lived well with mets and in particular with bone only. I would advise not to look at data/statistics online as these are out of date and do not take into consideration newer meds. Also as there is no collection of data on individual sub types of BC and their prognosis, it all gets lumped into one statistic and an average is determined from that. I'm sure many of the lovely ladies on here with bone only will respond soon, weekends can be quiet on here as I assume and would like to think, everyone is enjoying it, as much as you can in a lockdown anyway! Best wishes, ems x ... View more

Hi Gill Thank you for sharing this, I'm sure many will be grateful to know this, including myself. Haven't got an invitation to have it as yet but will follow this tip when I do. Kind regards.     ... View more

Hi Amanda,  Thank you for sharing your experience. It is very frustrating to read of your difficulty in getting yourself heard, particularly after a breast cancer diagnosis and one very recent, you would hope that you would be dealt with bearing in mind of this history you have.  I had my primary diagnosis in 2015, grade 3 stage 2 triple positive, had the book thrown at me so far as treatment. Last April diagnosed with mets to liver, lung and a rib and top of femur. Only symptoms I had of this was an on/off niggle on my left side so it was only the rib that gave the game away, I asked my onc when would the other sites have started complaining, he just said sometimes it's how it is! I'm sorry to hear of the extent of this disease on your spine and having to give up what you previously loved to do although your determination has lead you to the cycling, good for you. I always used to be a gym goer which obviously isn't feasible with the pandemic anyway, but after chemo last year my energy was zapped for ages even afterwards, it ended in august. Lately I have taken up doing pilates, stretches and weights as I've lost muscle tone, it always makes me feel better mentally too so I'm a great enthusiast of exercise.  Great to hear you have fantastic support, definitely makes all the difference. Take care. Caroline x ... View more

I too find it very insensitive. When I finished my treatment for primary BC in 2015 I was encouraged to ring it by ward staff but I declined and just walked past it, couldn't even look at it. Since being diagnosed with mets in april I've only heard it being rung once whilst I was having chemo treatment. A lovely gentleman declined to ring it a few weeks ago when I was having treatment, he told the chemo nurse that he wouldn't feel comfortable as some people have on going treatment, so some people do understand.  To be honest I look back now to the end of my then treatment and I'm glad that i didn't ting it, not only for the sensitivity towards others but also it would now feel like it was no more than an empty gesture, no real meaning.  ... View more

Gillyflower Thank you for responding so quickly. I am very encouraged by your results, although I'm not on the same regimen as you, it just shows the great response some ladies have to current treatments which is fab to see. Long may this regimen work for you. All the best x ... View more

Gillyflower, Amazing results, thank you for sharing! I think we all need these nuggets of hope to boost us on and as I've got a scan on Tuesday I really needed to read something like this at the moment.  If I may ask, was it determined whether it was definitely progression to your liver? I might have missed something or mixed posts up, but I thought I'd seen you mention a few months ago that there was some doubt. I'm just interested as this is an area I have mets. Best wishes for a fab 2021 x ... View more

Thank you for passing on this news, I am very saddened to hear of her passing. As previously mentioned she always took time to respond to others and offer support. I'm glad she passed peacefully with no pain.  I will certainly miss her posts on here. ... View more

Hi Danny Sorry to hear about your mum but she's lucky to have you reaching out on here on her behalf🙂. From my limited experience since being diagnosed with secondaries this year, I have learnt that blood tests are not accurate for everyone so far as gauging the activity of cancer in the body. Tumour markers can raise when a medication is working as cancer cells are dying they give off a 'flare' into the bloodstream. I had a conversation recently with my oncologist who said that these blood tests are really only used as a gauge for them to know when to scan as it is scans that are more reliable. The fact that your mums subsequent blood tests since starting anastrozole are showing an increase could be just down to the meds. Could she get a second opinion? It would be a shame to take her off a medication that from what you say, scans seem to show is effective. Ideally with secondaries we need to squeeze longevity out of each line of treatment before switching. I've only heard of meds been switched when a scan shows remarked progression.  Best wishes to you both x   ... View more

Hi I had my ovaries removed in 2018 when I was 37 along with hysterectomy after tamoxifen caused issues for me. Recovery was quick, I had 6 weeks off work but only because I was advised to, I felt like I could have returned after 3 weeks. I just needed someone home for the first week to do housework, cooking etc...so my husband took a week off. I wasn't in any pain and when I did get the odd twinge, paracetamol was enough. Best wishes with whatever you decide      ... View more

Hi Elise  Sorry to read about your mum. I would absolutely contact breast cancer nurse/oncologist to flag up these new symptoms. I've not been on letrozole long but I'm familiar with typical side effects which are hot flushes and joint aches, what your mum is experiencing does not sound typical but there again we all react differently to different meds. I hope you get some answers soon x ... View more

Hi kate Thank you for your reply. Good to hear your weight stabilised, I hope mine will too, I suppose the body is just getting used to it's new normal. I've cut out dairy as I'm hormone positive. I do use olive oil in cooking and on salads etc... Encouraging to hear that you are over 5 years on from your diagnosis too! ... View more

Hi Mclaire Welcome to board, I haven't been on here long having been diagnosed with secondary in April to lung, liver and a couple of bones. I had my primary diagnosis in 2015 so was quite a shock to be re-diagnosed. I'm not TNBC I'm triple positive so on a different regimen to you but I think most chemos share identical side effects so I can identify with what you're going through with that. I have kids but not as young as your daughter, it's tough isn't it? I hope you are getting plenty of support and taking things easy, I know that's easier said than done when you just want to be mum and keep things as normal as possible.  I'm sure someone with similar diagnosis will reach out to you here, as has been mentioned, weekends are quieter which is a good thing I guess as hopefully people are making the most of it with family etc.... Take care x ... View more

Hi Since being diagnosed with secondary in april I've cut out white carbs, refined sugar and processed foods. I'm eating wholegrains, nuts, white meat only every now and then, fresh fish. Dont drink alcohol or fizzy drinks so I have lost a bit of weight as don't really have much fats in diet. I've been pondering lately what I can do to maintain weight at least, I've lost a few pounds every time I get weighed at treatment every 3 weeks, nurses never say anything about it but it does bother me a bit but I don't want to deviate from what I am eating.  ... View more

I appreciate that your post is meant to be helpful but I do have an issue with your statement claiming that you know that cancer is an imbalance in personal or family life, nutrition and spirituality, upon reading this it makes me feel (I wont speak for anyone else), as though somehow I have caused my breast cancer. The incidence of breast cancer on both my parents side is quite significant and although I don't have the BRCA Gene's, it is believed that with such a significant amount of people within our family in the past that have had it, there will be a gene/mutation that has not been identified as yet (I have not had any further genetic tests). Unfortunately you can not alter a pre disposition to a gene, particularly if you don't know that you carry one. My cancer has returned after I was given all clear 5 years ago and I have always lead a healthy lifestyle, never been over weight in my life, always exercised and had an active job, barely drank alcohol, dont do take aways or fast food. Drank green tea daily. Friends and family were shocked in the first place and were telling me that I'm one of the healthiest and fittest people they know so if it could happen to me... Some people with cancer already question whether they could have done something to prevent it and yes maybe in some cases that might be so, but putting out such a bold statement as you have will make some people feel worse, that part of your post is not helpful. ... View more

Hi Gemini I am newly diagnosed in april with mets to liver, lung, 1 rib and left hip. My primary was 2015. I am still reeling with shock as I had no symptoms from liver or lung, I went to GP with a slight on off niggle in rib in march, i was referred for a bone scan which picked up low volume spread to those bones I mention. I was then sent for a CT which then showed the spread to lung and liver, I nearly passed out when I was told results which was over the phone at home due to covid. I finished 6 rounds of taxotere chemo in August, a CT at the end of august didn't show any great success in fact some areas in liver and the lung lesion had progressed slightly so I'm now on letrozole and I'm continuing with herceptin and perjeta infusions every 3 weeks, next week will be my 8th treatment of this. I too feel very scared and teary but not as much as I did when first diagnosed.  Coming on here is helpful as theres lots of support and encouragement.    ... View more

Hi there, I am on another forum with women from uk, usa, Canada etc...it was on there that I was informed to look into genomic testing asap as a guide to future treatments, many of these women have had it done. In America if insurance covers they get it done, and here in uk seems to be hit and miss as to whether you get it on NHS, some ladies have, others haven't so paid private, around £2,500.  I mentioned the prospect of it to my onc and we discussed it at length. He said that currently thanks to my recent liver biopsy we had enough information regarding my cancer to go off and explained that I would have to fund it and although it may specify a particular gene mutation and therefore indicate treatments that would target that, I may be left frustrated as that treatment might not be available on the NHS. I already know I don't have the BRCA mutations as I was tested for that 5 years ago at time of primary diagnosis. I will pay for private genomic testing though if needs be. Not sure how to go about it but I can ask on the other forum. ... View more

Treatment not currently being reviewed, I am now on letrozole which was always the plan to start this after chemo finished. Still having herceptin and perjeta every 3 weeks too. Onc wants me to have a scan before the usual 3 months to see if letrozole has got the rebel cancer under control, I assume if not then he will look at something else.😔 ... View more