New!Devastated/Questions

Hiya Honey,

So sorry you've found yourself joining an elite club nobody wants to be a member of.  I completely understand where you're coming from.

I'm 54, but have a 13yo son with my husband of over 30 years - he's our miracle as I was PCOS and have a bleeding disorder.  He was unplanned but a very welcome surprise.  We're now feeling cheated by my diagnosis, also Invasive Ductal Carcinoma, but ER+, HER2-. Mine too was caught early, am M1, and my breast cancer secondaries (metastases) has gone to my bones - spine, rib and pelvis, though only small.  This is treatable but not curable with current medications and technologies.  We're praying every day that the millions of pounds/dollars going into research and development that a cure, or longer term medicines are released to give us a longer, better quality of life.

Please be assured that this is not a death sentence.  It's scary sounding, but the surgeons are amazingly skilled, and your oncology team will do what is best for you, and your specific situation, as everyone's different.  I'm also on thyroid and blood pressure meds, so needed a different prescription to someone who might have the identical cancer, but not have those considerations to be weighed up on when working out the best path forward.

My diagnosis was late September, and immediately put on the hormone inhibitor, Tamoxifen, to stop my oestrogen feeding the tumour.  I had a lumpectomy and sentinel node removal (at that point there was no evidence on ultrasound it had metasticised) so after lab results from surgery revealed it had - all 4 nodes removed had cancer - I had to go back for second surgery 28 days after the first for axillary node removal.  At that point too, I was ordered a CT scan.  The CT showed that the cancer had not gone to any other soft tissue or organs in my body, but there were 'fuzzies' on my spine.  A full body bone scan was ordered, and confirmed that there were shadows consistent with secondary breast cancer on spine, pelvis and a rib. After I'd healed from the surgery about 6 weeks later (I'm a slow healer due to a blood clot disorder - my factor 8 is low, and therefore wounds take longer to 'seal up'), I stopped Tamoxifen and was switched to Letrozol, a different hormone inhibitor that works better with Palbociclib which is the oral med I'm taking to inhibit the cancer spreading/growing.  That's all I am having to do 'treatment' wise, though at the beginning of this treatment, and every 12 weeks from now on, I go to the Macmillan Suite for an infusion of Zoledronic Acid which will strengthen my bones while it's fighting the cancer.  I'm being so well supported by all concerned.  I have a blood test at the end of each 'cycle' of Palbociclib (it's 3 weeks on, 1 week off) and towards the end of the 1 week off, they take a sample of blood to test that all the levels are right before proceeding with the next cycle.  At this stage too, I get to consult with my advanced oncology nurse who is amazing, and answers any questions, as well as checking to see how I'm coping with it all.  Any side effects (so far, just a bit tired - not complaining about that).

My mother, by contrast 21 years ago diagnosed with the same cancer as me, had to have radical surgery - complete mastectomy of her left breast and axillary node removal (all lymph nodes from the left underarm) which took her months to recover from, then radiotherapy and oral chemo medication pills which she had many to take throughout the day for different times, before/after meals etc.

It all does sound quite daunting and scary, but I can assure you, once you have a plan and know what's going on, and you have the confidence of your medical team and get started with it, it does get easier.  Try not to focus on the 'darkness' of the diagnosis.  You're in good hands and your team want the best outcome possible for you.

I was terrified, as I was 33 when my Mum was diagnosed, and we only had her with us for another 6 years, and she was very ill from treatment during that time, though I was thankful we had her that long given her diagnosis when they really didn't have the options available to us today, to treat her.  I want to see my son grow up, and want to be a grannie one day myself, so here's hoping things continue well.

Sending you and your fiancé and family, much love and hugs as you come to terms/process the weeks/months ahead.

Hi, sorry hou've had to join this club! My cancer was also Grade 3 invasive and is HER+ which means that it feeds from a certain protein (human epidermal receptor) that's in our bodies.  To combat this, a drug called Herceptin is usually given to slow down / stop the HER protein from being present, so therefore the cancer can't feed from it.  I hope that helps, it's my simple explanation.

I had 6 cycles of chemo with Herceptin and then I am having a further 12 Phesgo injections, these contain Herceptin but are quicker to give than traditional IV drip.

My biggest learning from the last 12 months is that we are all very different and treatment is quite bespoke so it's hard to say exactly what your treatment will be, but I can share that chemo shrunk my lump and then I had surgery and radiotherapy and I am doing well.

Good luck, in my view it gets a little easier when you have a clear treatment plan so hope you get this soon

Hi. Mine is/was 19mm, invasive ductal, E8, HER2 Positive. Had lumpectomy 20th Jan, sentinel node removal. Was on Anastrazole prior to op, to try and prevent growth/possibly reduce. Initially told Grade 3, downgraded to Grade 2. Had clear margins, no spread to lymph nodes. Started FEC chemo March 15th,  not doing too badly at all. Plan is FECT x 6, Herceptin injections alongside cycle 4 every 3 was for a yr. Then Anastrazole tablets for several years, all to prevent recurrence. Sounds a lot, as in my head I'm now cancer free. Not had any scans. I'm 63, post menopause. Hope thus helps, first chemo felt surreal. Headache, indigestion, but eating normally etc. Taking all the anti sickness meds as prescribed so no nausea. Day 13, pistol chemo, no sign of hair loss yet, had it cut short ready. Got my wig sorted few weeks ago. We CAN do this. Jo x

Thank you Irishgirl for your reply, I'm sorry to hear you are going through this but are doing well during treatment thats so positive!

Thank you for your Information, it really does help to know some of the possibilities of treatment, I understand we are all different & have bespoke treatment. 

before finding my lump I have been suffering from gallbladder issues, i've been having horrendous 12 hour gallbladder attacks when eating fatty foods , I'm now on a no fat diet & already have lost 3 stone, i'm now 7st 6lb ,  i've been diagnosed with multiple gallstones &  currently waiting for surgeon to ring me on the 11th April to discuss treatment for gallstones, surgery is the only option to stop the attacks ,  but i'm not sure now weather this will be put on the back burner with now being diagnosed with breast cancer. Maybe it's all connected who knows only time will tell when I go back to see the consultant. Another lady mentioned M1 mean's possibly spread so i'm concerned that my gallbladder maybe affected.

I've also a frozen shoulder which i've been having trouble with for a very long time. it's been one thing after another this year!

I also have Mitral regurg floppy heart valve which I've read on the nhs website that if you have heart valve problems then you may not be able to take Herceptin. so many questions I have which I will write down and ask my consultant. 

Like you said i'm hoping i'll have a clearer picture of treatment soon! 

Thank you again for your reply its not so lonely being connected to others going through the same. Such an emotional  rollercoaster! xx

Thank you Jo for Information & sorry your going through this! can i ask what does FECT mean ? 

such a lot to go through, so many medicines to take, our bodies seem to have to take a beating but worth it to get rid of cancer! pleased you have no sign of hair loss! you seem like you have it under control with having your wig ready to go. your very brave. Honey xx

Hello Brainy, Thank you for your story & Thank you re M1 information. I'm sorry to hear you have your Diagnosis & it's M1. such devastating news but positive you caught it early. 

I'm sad to see you said it's treatable but not curable, must be hard to accept , how on earth do you deal with that news,  I guess you cope as best we can. sounds like you have been through such a lot already you must have amazing strength. 

Yes you right it does sound daunting & scarey, i'm terrified but I know I need to be strong to be able to get through this, i'm hoping when I get my treatment plan I will be able to accept it better. 

My fiance is absolutely amazing I don't know how I would of coped without him this last week. we are in the process of moving next month so we are trying to concentrate on that to distract us. 

Thank you again for your story & I send you love and hugs to you and your family.