Help me understand my latest report - In pretty bad way...

Anonymous

As per the NHS, I received a letter today with the recent read-out of my diagnosis (last Friday with the worlds worst surgeon). She omitted to tell me a LOT of things, or got some things wrong, and now I feel like its back to planning my funeral. Here is what it says (important bits):

-5cm U5 M5 lesion

- Grade 3 IDC receptors were ER8 and HER2 2+ (gene non amplified)

- Large lymph node in right axilla - still not determined what it is awaiting results from second biopsy)

- MRI scan showed index lesion measuring 16mm,no other lesion which could be an intramamary lymph node, awaiting second look ultrasound

- CT scan showed lytic lesions of right iliac (where I have a known injury) measuring 5.3cm and sacrum measuring 6.2cm consistent with metastatic bony disease. CT also showed a non-specific 4mm nodule on left lung base - bone scan still pending

Im so angry that woman never mentioned anything about the sacrum or the lung bit. I know the bone scan is out yet for consideration, but I thought they were going to ultrasound the suspected bone met, she didn't mention the clip insertion to be done on the lesion.

I knew the risk was there of being Stage IV (and i posted on that subsection too), but this makes it sound like I practically have a hole in my spine and I'm just screwed. I just wish I could find some elements somewhere of compassion in all this mess, for someone to give me some kind words but every interaction with the hospital or people and its a new person and its not delivered well or in its entirety. Every Friday I end up crying and upset and I thought maybe this Friday would be different. Guess not.

My chemo appt is Monday along with this clip insertion and ultrasound, in two different hospitals across town. I feel like such a freak walking among the living, especially when listening to coworkers talk about their upcoming travels and plans and I have nothing but THIS to look forward to. I feel very alone and scared and nothing, NOTHING is getting better. Someone please help me see even the smallest smidge of hope, anything.Tell me its going to be ok long enough to get home to America next summer once im through chemo and surgery and whatever comes after.

Yogatyme

Sondra, I am not able to help w your reports at all but I can certainly see why you are so angry and scared. For the life of me I will never understand why compassion challenged people choose health care as a profession. My heart truly aches for you and what you are going through. Going through it with compassionate care is hard enough but at least you don’t have such a sense of being alone in this. Please know this is a good place for support and to know you are not alone. Sending good thoughts and loving hope your way.

ErenTo

Sondra, you are not alone and you are not a freak walking among the living. Once they figure out what you exactly have and have a treatment plan in place, it will start to feel better. You are in the middle of the worst phase of this nightmare. And when treatments start to work, your bones can heal. You may want to post in stage IV forum as well, as you will find women with a lot of experience with life after bone met.

lkc

Hi Sondra i am sending u a PM.

SSInUK

Please don't worry about the lung nodule lots of people have them reported and they turn out to be nothing. It doesn't sound as though your bone results are definitive yet either? Reports often alert to the possibility of mets but that doesn't mean it's a diagnosis it's a consideration. Even in the worst case - my dear friend was diagnosed with bone mets at the outset and since treatment has been living with no evidence of disease for 6 years on tamoxifen alone. Things will get better when treatment starts. Surgeons are often not the beat at people but most oncologists are kind and compassionate and you will Ben passed to them after surgery. Good luck - many of us have been where you are and could see nothing but darkness but there is a path through this. X PS I am in the UK too PM me if you want to talk

travellady

Hi Sondra and I totally agree with SSinUK about the nodules and other words of wisdom.

This is my first post here but I lurk and spotted that we might even be in the same hospital today (currently sipping tea in the West wing with view of the fountain outside, a bit grey today). Oncology appt upstairs later. If you wanted a soothing cup of tea (or even coffee) and a natter with an old hand at BC and the hospital please do PM. Hang in there, as you will get through this.

Anonymous

Yeah, that's it - I got the Stage IV confirmation from the consultant based on the bone scans. So now we go from chemo and surgery to just hormone therapy to get the tap turned off on this thing. I felt MUCH more comfortable with this hospital and this consultant, compared to the other one, and he assured me I didn't have to go back up there ever again. Unless we do surgery at some point and for that I would go private anyway.

However, as per my track record, they want to take an MRI of my spine and pelvis, so I cant WAIT to find out how moth-eaten that is. Frustratingly I went to the doctor first for back pain after my incident early in the summer, and not the breast issue. Im not sure she would have ever tied the two together anyway. Reading about estrogen dominance on the run up to perimenopause I think I hit the wall hard at 40 and it was a confluence of factors (moving, high stress job, poor diet and environment, etc) maybe had I had a consistent gyn for 5 or 10 years would have been managed. But I didn't and Im not even sure I would have known to ask a new doctor, especially given the set up here, about that.

This blows the big one but I've done my crying. I'm just happy to have a plan and that I dont have to do chemo, although I am a bit unhappy I have to lug Chad Tumor around now for the forseeable future. Looking down to the right is just like a permanent reminder of my failure to put myself first.

Not sure if I will hang out on the Stage IV forums as reading them this weekend made me very upset and was a continual reminder of where I'm at. It cant be changed and it cant permanently be fixed but I can keep on going as best I can until I can't anymore.

Travellady, I will PM you separately - they shoot me up next week with the estrogen ender and then I go on the cocktail you have. Its definitely the same hospital, and I could do with someone to help me learn the ropes of the services available, managing side effects and early days. I guess this means I keep going into work for the time being, until I figure things out. At least I can keep swimming, and if the back is ok go back to some weight training.

SSInUK

I’m so so sorry for your news. As my friend proves bone mets can be very liveable with long term and Ibrance has been an incredible enduring magic bullet for others too. At some point you may want to further research the surgery/no surgery question for stage 4 de novo. I say that because I understand you are a US citizen in the UK, id want the best for you and I have heard stories of less than optimum treatment in the UK. If you are in a good London hospital then you should be in great hands and your instincts will be the judge of that. Good luck I am thinking of you, treatment will get you to a much better place. And btw there is wonderfully compassionate care to be found - I am treated in London and have had amazing care and support - don’t ever put up with less.