New and worried.

Oh bless her , I hope she’s as ok as possible 

sending huge hugs 

L xx

Hi everyone

Sorry for lack of replies. It's been hard here with my daughter's mental health. She is no longer attending school as camhs have said she is not medically well enough to attend mainstream school. She is being refered to a hospital school. I still haven't told my children but know I will need to do this soon. 

I received a letter today from my last appointment when I got the biopsy results. On it it says the 2 lumps show features of invasive ductal carcinoma. One is grade 3 tumour, the other one has not been graded. My lymph node biopsy shows metastatic disease. It says the distance between the 2 tumours in my breast is about 7cm and one of the tumours appears to be confident over a distance of about 5cm on the mammograms. 

I don't know what any of the above means apart from it sounds bad I had an mri last Saturday and get the results on Tuesday. The mri was only the breast area though. 

What does any of this mean please? I've not been in touch with the hospital as my daughter is currently my shadow so I can't speak on the phone. 

Did the letter actually state metastatic disease? I am asking because a spread to the nearby lymph nodes is not considered metastatic disease. Best to ask the oncologist to clarify all of that as well as anything else the letter says. A little strange about the other one not being graded, I would ask the oncologist why. 

I really appreciate you posting this update. It is clear that you have a lot on your plate, what with your own situation and that of your daughter, as well as caring for the other children, so I know we may not hear from you sometimes, but I hope you will continue to update as things develop, whenever you can.

On the cancer front, things may start feeling a little more stable once the oncologist has answered all the questions and has outlined the treatment plan. (It has worked this way for a lot of us here, so I hope it does the same for you.)

I think they may only grade one if them because, with one being high grade, they would have to treat you based on this anyway so, even if the other is a lower grade, it won’t change the treatment plan, if that makes sense.

as greycats says, lymph node involvement doesn’t mean metastatic disease. 

I hope the hospital school referral comes through soon and things get easier for your daughter and you. Xx

I’m so sorry you’re having such a tough time, I did speak to my boss about your daughter and she was really sad because she said of course the SENCO could/should be doing more to help you, she was going to have a think and then come back to me because we both felt that the last thing you need is a row with the school should you escalate the lack of support to the head and governors. It sounds like this may be a moot point though if things have escalated further. are cahms now doing more to support you? As the others have said, spread to the nodes isn’t metastatic and whilst it’s a horrible shock and incredibly scary, you can still have a good prognosis from here, I have grade 3 with lymph node involvement and it hasn’t spread further so try not to loose hope. I hope things are manageable for you there at the moment xx

Thank you for replying. It's only a short reply, I'm going to try and add a photo of the letter if I can. 

I'm worrying myself now. Since Christmas on and off I've had a really back neck and shoulder but on the opposite side to the cancer. It went away for a while but is back again now but I just read it can spread to the neck and shoulder.

last night I was awake a lot as my daughter was begging me to take her to the hospital as she was having suicidal thoughts and saying she felt she could act on them. Who will help her if I'm gone  sorry I'm not feeling very positive at the minute 

Thanks for sharing that part of the letter. About the MRI, yes, with dense breast tissue the mammogram has difficulty seeing everything they want to know, so they then do other types of scans in an effort to gain as much information as they can. The scans have different ways of "looking" and so give the doctor more data with each scan they do. Having detailed investigations is a good thing. It does not have any meaning in terms of how serious the cancer is, it does have meaning in that the doctors are thorough and are using all means in their disposal to look inside.

The wording about the axillary lymph node and metastatic disease is curious. I would definitely query it with the oncologist!

Regarding you daughter, the point you raise is very valid and important. It is not only a question of who would help her if you are gone, it is who would help her if you are unwell after treatment or after surgery. It may be that neither situation would arise, but it might help if you know in advance what can be done and by whom. I realise you don't have any great options, but any plan of action is better than none. For instance, if you and the children are at home, your daughter goes into a crisis and you are not quite able to deal with it, who does your older son then contacts? Who would you allow temporary parental responsibility if needed? If you can figure out the answers to these and other such questions, it may help a little.

But, right now, are you able to call the Macmillan help line? I get the feeling you need right now more than forum support and I want you to have it.

Thank you, I can't call them at the moment as my kids are home. I'm just hiding having a little cry, tomorrow my daughter has a camhs appointment so I will try and phone them then. I'll sit in the car. I have the hospital for the mri results on Tuesday, I need to figure out an excuse of where I will be. I'm trying to find something to distract my daughter on Tuesday while I go but she questions everything. (She will have my mum here with her cos I can't leave her unsupervised)