Hi,
This is my first time posting, I have recently been diagnosed with lobular cancer and positive with E&P, negative for Her2. I am grade 2, but cancer has spread to lymph nodes and bones. I have been told that I cant have surgery as it has spread, has anyone else been told this? I am waiting to have my appointment to discuss treatment, but the doctor who gave me my diagnosis told me it would be hormonal only.
I am in a state not knowing what next steps are. Although this is stage 4, am I kidding myself that I can get a lot of decent years ahead of me with just hormonal? I have no symptoms, and although a 7cm lump, nothing has been picked up on 3 mammograms or ultrasound. I don’t really know what my question is, just wanted to know if anyone else has had similar x
Hi @elsie5 I wanted to welcome you to the forum and say I’m so sorry to hear of your situation. I am not Stage 4 myself but wanted to suggest that you post in the specific stream for those that do. You can find it here Living with secondary breast cancer - Breast Cancer Now forum and the first subcategory is called Treatments and Medical issues which might be seen by more of those who can answer your question and support you. I also suggest that you call our nurses on 0808 800 6000 from 9am tomorrow (the helpline closed at 4pm) to talk over these points to get some clearer understanding. They are lovely and very experienced and knowledgeable ladies who won’t rush you - I think it will help you particularly at this stage when you have questions but no immediate recourse to answers. I wish you all the very best in the future.
i have a prayer group friend who had said she had but turned out it was benign then recently she got it and refused tx.
The most interesting thing is her daughter was stage 4 but somehow with treatment she said she is in remission with no sign of cancer. i don’t know how or what.
Hi I was diagnosed in December with lobular. Plan was mastectomy due to size confirmed on MRI. CT scan to check for spread found a singular lesion on my spine and then mri confirmed stage 4. I was told surgery was now not possible as needed to get control of disease. I’m on hormonal and a targetted treatment and so far it’s keeping it at bay.
I was diagnosed with invasive lobular breast cancer ER & PR positive and HER2 negative in June 2024. No primary tumour but had metastasised in my bone marrow. Apparently extremely rare. I was very ill and hospitalised twice in June with countless platelets and blood transfusions. I was told it was incurable ( Stage 4) but they would try and control it. I was put on Letrozole which worked swimmingly until Christmas when it started to lose its magic. Six monthly CT scan in January showed lesions on sacrum and pelvis. Up until then paracetamol had been enough to deal with the soreness in my legs but now I was given prescription for Omeprazole and Ibuprofen for pain. The CT scan also showed fluid on my left lung and around my heart so prescribed heart tablets then just recently 2 weeks of steroids to help with fatigue. I am going through another round of blood tests, MRI, echocardiogram, CT scan. Now have to wait for results but I fear that I will be moved onto the next stage of my treatment pathway of monthly Fulvestrant injections (hormonal therapy) and Abemaciclb (targeted therapy). Of course there will be more side effects. Hey ho it could be worse! Last summer I was given a prognosis of ‘unlikely to be less than 6 months’. Here we are over a year later and I am still breathing and planning a birthday party in September. A birthday I never thought I would have. I will be 74.
You are the first person who has been given a similar diagnosis. The trouble is this cancer sets the rules which it can change whenever it likes despite all the effort we make.
To me it feels like getting on a magical mystery tour train but you don’t know where it will stop or how long it will be until you reach your final destination.
The general advice I have had is live every day as best you can.
I wish you well and send hugs. Have courage. Best wishes J
Hi @magnolia1 it’s very difficult to hit the right tone when responding to stories such as yours, particularly in writing, without sounding somehow patronising so all I will say is - the only thing any of us really has, is today. I hope for you a very long line of todays. And, of course, a very happy birthday when it arrives.
I am afraid the results were far worse than anticipated. MRI showed cancer had attacked every vertebra of my spine and pelvis. Bottom half of spinal cord now has no fluid around so I am at risk of metastatic spinal cord compression - given a medical emergency card for this. The progression has also meant a change in my meds to Abemaciclib, monthly injections of Fulvestrant and in addition because of the bone mets I have monthly injections of Denosumab. 8 was given yet another medical emergency card regarding potential infection and sepsis The week before this started I was given a one off dose of radiotherapy to my pelvis and hip to try and reduce the pain. Unfortunately at week 4 it has increased to the point I take morphine 4/5 times a day. I had to have a stair lift installed. Quality of life is now zero as the side effects of the radiotherapy and the three new drugs kick in and my 74 year old body is struggling to cope,
Dear @magnolia1 as someone in the same age group as yourself, I cannot help but weep when I hear your situation. I hope that you have family and friends giving you love and a lot of support as you face these new challenges. A number of Stage 4 ladies of my acquaintance have found some respite at local hospices which offer treatments and support groups on a day basis. Perhaps that is something to investigate? For what it’s worth, I shall keep you in my thoughts.
Yes, I do go to ny local Day Hospice. I am halfway through my 12 week slot. I am the only breast cancer patient. They are lovely and they have upped the support since this latest further secondary diagnosis. Thanks so much Tigress for your kind words.