FML WTAF?!

Well, right. I feel kinship here because when I was first diagnosed I was told I was triple negative, grade 3, stage 4. They were only partially right, in the end it turned out I was actually a stage 2, but I had 11 months of, "I have stage 4 cancer," before the truth finally came out. And so, I get it. 

Why are they saying liver, have you been scanned and something found on the scan that looks suspicious? Are they going to biopsy?

The first thing I would do is make a couple of decisions. First, how much do you want to know or not know about your cancer. Some people want to know everything, some want to know as little as possible. Second decision -- who you want to share this with (family? friends?) and how much do you want to tell them. 

Side by side with that, I would ask for the name, contact telephone number and email address of the designated key worker, normally a breast cancer specialist nurse. I would also find the nearest Macmillan centre and find a nurse in there you feel comfortable with, and I would find the nearest Maggie's centre because they can help a lot but I can tell you about that later.

If you tell me what you feel you need, perhaps I can help a little with more information or practical advice. As for the FML type blow, yeah. I cannot emphasize enough how much I get it, and how much I also know that it is a very personal experience for each of us and we don't necessarily experience it in the same way. But, we are all here for each other, offering hugs and comfort to those who need or want them, practical advice, and so on. 

So sorry to hear this  what a shock indeed. Fingers crossed that the MRI is clear.  No matter what though, there will be lots of support for you on here.  Personally I felt the waiting for the diagnosis was the hardest part, so I hope you get clarity and a treatment plan soon x

Thank you Irishgirl16. I knew the outcome wasn’t great at the end of my first appointment (ultrasound & biopsy’s taken) but didn’t expect to be informed at the next meeting (following a CT scan the day before) that they think it’s secondary. I’m due to start Chemo in the next couple of weeks & will hopefully meet with my Oncologist next week or the week after to discuss my treatment plan, but it’s waiting for the MRI scan & the results from that I’m finding difficult. Just not knowing if it curable or just treatable. Do you mind me asking how long have been diagnosed for & how you’re finding treatment etc? x

FM your situation sounds dreadful, to be told that & think your stage 4 for all that time to then find out you’re not. I’m not sure if I’d feel relief or anger tbh, probably a bit of both. 

They done a CT scan & said that there is some shading on my liver so are sending me for an MRI to conclude this. 

I want to know everything lol. I have told our close friends (who are neighbours) & my boyfriend but am travelling back to Wales next week to tell my Family before anyone else. My Sister died at 29 of Ovarian cancer so I know my Dad is going to find this difficult to deal with. 

They’ve given me loads of info at the Hospital & Maggie’s is something that I definitely want to look into. 

Thank you Greycats. It means so much to have peeps like you I can chat & vent to without unloading on my poor boyfriend all of the time (who is finding it all quite difficult to deal with atm) x

Gosh Babylons. I think anybody would be shocked, totally anxious and confused finding themselves in the situation you describe. So sorry to read this. I really hope you don't have a long wait to find out the results of your MRI. Sending very best wishes and positive vibes your way x

First of all, you are spot on -- I was both relieved and angry (still angry two months on.)

You saying your sister died at 29 from ovarian cancer made me sit up. Listen, I was offerred genetic testing for the BRCA1, BRCA2 and PALB2 genes, as an alteration in these genes is significant with breast cancer, ovarian cancer, pancreatic cancer and prostate cancer. I am currenly awaiting the results and if I do have the gene alteration there are going to have to be some conversations with my tribe on all sides because we do have some rich hisotry of breast and ovarian cancer in the family. Telling you this so you can look into it and see if this genetic testing is something you might be interested in.

Maggie's, in my area, were great when it came to finding out and applying for certain benefits as well as travel grants. Additionally, I love their building, the hot drinks corner where you can make yourself coffee or tea to your taste (milk in the fridge, tea on the counter, a variety of other teas in the drawer, instand coffee and decaf on the counter, I could go on....) and their many, many quiet sitting corners and rooftop garden. The people there are lovely too.

One more thing I wanted to mention for now has to do with statistics. You said you wanted to know everything so I wouldn't be surprised if you start looking into that. Took me a while to work this out, but at some point I realised the statistics incorporated women who were much older than me, whose general health was much poorer. Neither I nor you are that "average woman" from the statistic. Second thing on this, the statistic describes data as it appeared in the past. New treatment options are coming out all the time, so we, the women who are going through all of this now, are not a part of that statistic but of tomorrow's statistic. 

Something else I wanted to tell you of my own history: at first they were finding "shadows" in all kinds of places. I was sent to have my bladder looked at closely, because they thought they found something there too. So, now I have seen the inside of my bladder on screen, haha. Nothing cancerous there. So your liver may be innocent after all, but you do need a definite answer on that.

Hi, I was diagnosed in February last year, stage 3 invasive, HER+ and ER+.  I had chemo first, then surgery (lumpectomy), then radiotherapy and am nearing the end of the Phesgo (Herceptin) injections but still have 9 and a half years of Letrozole tablets to go!  I managed to work through most of my treatment, even chemo, but I did take some time off after surgery. I feel good now, though the radiotherapy has left me quite tender and swollen, even now 3 months on xx

Thank you Pangles x

Sounds like you’ve been through the wars. Have they managed to shrink or remove all of the cancerous cells? x 

I’ve already spoken to them about the genetic testing, I’m just angry that I never had the foresight to get it checked years ago. I just want to get this MRI done so I know what I’m facing. How are you now after everything you’ve been through? x