I was diagnosed in March this year with Metastatic breast cancer which has spread to my bones (HER 2 neg, oestrogen +).
I am 30 years old and it all came as bit of a shock, as there was no primary diagnosis previously. I kept going back to the doctor with back ache, eventually got fed up and went to the hospital for a scan, and the bone defects showed up of that! It took a long time to be diagnosed as breast cancer, as the breast lump was very small and first couple of doctors missed it.
Since then it has all been a bit of a whirl wind, as I’m sure you all understand, and I’m just starting to make sense of my treatment plan.
Currently I am taking Zoladex and Letrozole as hormone therapy and then denosumab for my bones. This all seems to be working reasonably well at the moment, as my scan results shown slight improvement in the bones and I feel a lot better.
My main query is regarding the role of surgery (lump removal or mastectomy) in women that did not have this done as part of their primary treatment, and whether this benefits people with secondary cancer. I have posed the question a couple of times now in my appointments with my Oncologist about the possibility of having surgery and he seems quite reluctant to go down that road. He seems to think it obviously won’t cure me, so what is the point. I too do not want to but myself through an unnecessary operation if I don’t have to, however, I am reasonably well at the moment and so if surgery did have any benefit in slowing down the spread of the disease then to me it would seem sensible to peruse it.
I would be grateful if anyone that has been in a similar position could comment, or maybe let me know if you have had similar conversations with your oncologist.
I would also like to mention, that it has only really been the last few weeks that I have started to look at some of the thread topics, and I have to say I find it really useful and in a lot of cases very encouraging that some women seem to be getting on so well with their treatment.
I too have bone mets and am her2 and er pos. I was diagnosed with a pathological fracture of my left femur in May 2013 and have a few other small bone mets. From the start of all this I was so certain I wanted surgery. I had a second opinion at the Royal Marsden which did suggest that further down the line the possibility of a WLE may be investigated. I have since been seen by the breast surgeons at my local hospital where I am being treated. I have had a mammogram and another biopsy. The surgeons, like yours do not recommend surgery but would be prepared to perform it if it is what I want. Also because there are 2 areas in the breast of cancer cells ( admittedly much much smaller) they are saying that if surgery was performed then they suggest a mastectomy. To be honest I am unsure what is the correct decision. I don’t know if you have heard of oliogmetastic disease. There is a lot on the web which suggests if you are aggressive with the cancer and there are only a few areas of mets it may be possible to achieve a long term remission and even a cure! I don’t know if this is just wishful thinking. You are only young and I wonder if your team should be aiming for this if it is a possibility. Or at least to take your views into account. I have read so much but still don’t know what to do. I know there are long term Mets ladies who have not had the breast lump removed but then there are ladies that have despite being secondary and are again doing well. I also think things are complicated for me because I feel quite well at the moment on the herceptin, pertusumab, tamoxifen and denosumab and I don’t want to jeopardise this!
Sorry if I haven’t helped much and I wish you all the best with whatever you decide.
I am 36 and have also just been diagnosed in the past three weeks and have been asking the same questions. I can’t feel that I might benefit from surgery to remove my primary breast tumour and if possible a private op to my liver. My onc is advising that she doesn’t believe this would help. If it would give me another year it may spend 8 months of that year recovering with no chemo treatment available the cancer would be left to spread elsewhere. I am taking a second private opinion at this stage I need to know all my opinions…
Hi, I replied to your thread on the Living forum but here’s my reply copied here, best wishes. X
So sorry to hear of your diagnosis and at such a young age Amy. I was diagnosed with bone mets and breast cancer when my hip spontaneously fractured and I’m er+ and her2- I was in my early 40’s at the time. I have not had my primary tumour removed and I have had, so far, eleven years of living with this. My primary has hardly changed in all that time, most of the time it’s been small and hardly noticeable. Best wishes. X
Hello Amy. This is just my story, may help you to see as many points of view as you can.
I had a RMx and node removal after a routine mammogram…I opted for a reconstruction before Mx and so they did a reduction on my left breast at the same time. However after the op they discovered that I had cancer in my Left side as well…this did not show on the MRI scan, they told me that I had -‘numerous tumours - too many to count - spread throughout the breast like grains of sand, all less than 2mm in size’-
apparantley they said that less than 2mm does not show on MRI. I also had a skin lesion about the size of my small fingernail removed at the same time…this was just under my right breast, this also had breast cancer cells in.
After more scans I was put on LETOZOLE, the surgeon said that it would be futile to do a bilateral (I had a temporary implant in the right side) it would be futile because the cancer had spread. Three months later the BCN rang to tell me that there had been a dramatic drop in my tumour markers, and at my next consultation I asked again for full mx on both sides. Surgeon once again said no - he said another concern was that I may have eruptions because of the skin lesion. I gave up then until a few weeks later when I told ONC that I found it psycologically distressing to have this breast full of cancer. He arranged meeting with BCN, surgeon, me and my husband and himself of course. (there was also a psycologist there who was introduced but never spoke) Onc was very supportive…said that if any skin eruptions occurred they could deal with them by radiotherapy. Could see my point of view, he said, because he had patients with healthy breasts who on diagnosis wanted both removed. He also said he could see surgeons point of view because they fear (and are indeed trained not to) cutting across cancer cells. He also said that they weren’t saving me surgery because they would have to operate to remove temporary implant and put in a permanent one…which is what the surgeon wanted to do. I didn’t want that - just wanted bilateral, no reconstruction.
So I had the op. No regrets, but I am in my early 60s- perhaps that made a difference to the way I felt.
After the decision was made the surgeon was very good, I had full faith in him and he carried out the bilateral op with no probs. Skin hasn’t erupted. Haven’t seen that onc for over a year now, but he was brilliant. I may ask to see him next time I go…
Regarding surgery options ets for bone (and liver) mets - I have both - and I still have my primary breast tumour. I’ve had no surgery to breast or armpits though my original fine-needle biopsy (in 2006!) showed cancer cells. Not had radiotherapy either. Had a lot of treatments, chemo and hormonal - letrozole and capecitabine have worked well for me.
I hope people reading this may be reassured that it is possible (though probably unusual) to survive this long with bc still there. I am treated at the Marsden and have confidence in my team. (I was told a few years ago that I would be offered breast surgery if I needed it).
Hi Amy-Lou sorry to hear what you are going through at such a young age. My name is Maria I am 64. My diagnosis is identical to yours. I posed the same question to my oncologist. She told me that the letrazole & denosumab treatment is working to reduce tumour and try to stop further spreading. I have widespread bone metastasis which they are trying to contain also. She has referred me to a surgeon as I posed the same question as you with regard to the possibility of full left mastectomy slowing the disease down. I am happy to proceed should that be the case. I think you should try to persuade him to at least pose the question to the surgeon and let him tell you if he thinks it’s worth a try. Sincerely wishing you strength and courage for your journey. Blessings for all of your days too. Xx