My sister aged 52 has today been advised that she has Metastatic Adenocarcinoma which they believe is linked to her Breast Cancer 16 years ago. She had a Lymphoma and a lumpectomy operation at that time and the measurements advised now for this are 14mm x 10mm x 6mm.
Shortly prior to Christmas (2009) she had been experiencing a painful area in the clavical? ( front, lower left side of her neck) which seemed to be slightly swollen), this went down but returned more painfully after Christmas and she sought advice from the GP. Based on her previous history he referred her for x-ray's, blood tests and as silly as it seemed an ultra sound scan of her stomach! Followed by a further Ultra sound scan of her neck. The results proved inconclusive so she was referred to an Ear, Nose & Throat specialist who then put her forward for a CT Scan and a biopsy, and they would see her in clinic 2 weeks later for results.
Again, based on her history, the results came back (not good) was what she was advised, but inconclusive. They booked her in for an operation to have the lump removed which has been done, but they have also located another lump the other side, and she would be seen back in clinic again, 2 weeks later. That was today.
All they have said is that it looks like Metastatic adenocarcinoma and other words used were 'Extracapsular extension', 'Immunoreactive', ER & HMFG2, and negative. Not necessarily in that order, because all became a blur, information overload, shock etc.
I have researched the definitions but don't want to add 2+2 to get 8.
She will now be referred back to her original consultant from 16 years ago which will be another 2 weeks to wait, in the meantime, her mind in working overtime and she is experiencing nightmares and can't sleep. No one has told her what to expect, what the next stage is likely to be, what treatment, if any, is planned, nothing.
Please, can anyone help me with how this can be connected to her Breast Cancer 16 years ago, unless of course, it's classed as a Secondary Cancer, in which case, can you please tell me the implications of this as well? What could be the prognosis?
We are in England and I don't live 'normal hours'.
Hi rddykie181146. I am so sorry about your sister's cancer. I am not sure how much I can help you. It sounds like the doctors are suspicious that her breast cancer has returned. That would make sense to me because:
[list=1][*]The breasts are glands (Adenocarcinomas are glad cancers)[*]"Extracapsular Extensions" or ECE is a prognostic factor with Breast cancers and a few other cancers[*]Immunoreativity is a test the do with breast cancer patience to see if their tumors might react well to immunotherapy[*]ER and HMFG2 are two other thing the test for with Breast Cancer patients. [list=1]
I don't know how to "add the up" either. I will move your post to the Breast Cancer Forum. You will get more answers there.
Thank you Jim, We are still trying to get over the shock but also trying to manage the practicalities of the situation, like what needs to be done, what timescale, who by etc. I'm sure you have more knowledge of what's to come.
My sister has got an appointment for next Wednesday having been referred back to her original Breast Cancer consultant but she has had to push for an earlier one because they were offering her one 2-3 weeks time. My sister is doing everything at 100mph in her head but we are trying to get her to slow down and keep things in proportion.
We can only give her information in 'bitesize' chunks because she would just not cope. How do people cope with this condition?
I will keep posting updates as I find websites like this very useful and any suggestions or support would be gratefully received.
Right now there is very, very little that you can "do" or that she feels like you can do for her since you and your sister are still in shock. Her going at 100mph is a normal way for some people to deal with the shock. Just hang of for a bumpy ride until she starts coming out of the shock. Just "be" with her so that she will know that she is not alone.
After she starts coming out of the shock, then there are things you can "do." What I often suggest (just did this to someone else) is to help your sister identify the things the she need to do and the thing she would like to do with whatever time she has left. Would she like to go somewhere, see someone, talk with someone... ? Even if it is something as simple as eating a special meal, you can find ways to bring joy to the time she still has. You might also help her to document her life story. This can either be an actual written document or in these days a video taped account of major life events. I guess what I am saying is that you can be your sister's personal "dream factory," helping her to define some realistic goals and then, to whatever extent possible, to assist her in achieving those goals. I know that when my mother died and then when my father died, they wanted to go to their church as often as they could. I helped them do this even though I belong to another church. It was something that gave a lot of joy to both of them so I was willing to take them. That is just a suggestion. With help from your sister, you can identify the things that can bing joy to her life.
You and your sister are still in my thoughts and prayers.
Today has been a more positive day. We have spoken at length and I have suggested she write down all the questions that pop into her head about her condition. What can she expect, what will the treatment involve etc and we have made a good start with that in order for her to take this to her appointment next week. It has been quite theraputic in a weird sort of a way because she is feeling more organised and prepared to plan. She has never been one for tea and sympathy because as she puts it, she'll crumble and go to pieces. She needs to think positive and to be as proactive as possible.
Its funny that you mentioned the video diary of her life because when she was 50 years old, 2 yrs ago for her birthday, I had designed a folder similar to that of 'This is your Life' on UK TV with Eammon Andrews many years ago. I had designed a page for each year of her life, including photographs starting from 3 months old when she was christened. She was amazed and loved it, and we had the pleasure of re-kindling all those childhood memories when she sat turning the pages (priceless).
I have spoken to some of our friends and we are going to plan a sponsored walk for her to raise funds in order that we can send her to a 'dream destination' arranged around her treatment once we know what that is likely to be and we will get all her work colleagues involved in it also.
We're also trying to re-arrange her working day so that she isn't left to her thoughts on her own when going home to her empty apartment. Her boss has (so far) been very supportive and I suspect her will continue to do so.
You have had this disease with you for many years and you remain so positive which is a good thing. I really appreciate all the good work you have done around this forum, as I am sure others do also. Your comments are inspiring for the unfortunate ones of us who find ourselves thrown into this position, unawares of what lies ahead.
My sister's current goal is to go to Egypt in May obviously subject to her treatment, we shall have to see. This was booked last year before any of this came to light and her second goal is to be around for her only Grand son whose 4yrs old.
We have always respected how precious life is following the loss of our brother aged 20yrs (died in Road Collision) some 26years ago but nothing can prepare you for this. But we must continue to be positive and enjoy everyday. No one say's it will be easy and we're not through the shock stage yet but whatever we face, we will face it together.
Goodnight and god bless. You will be in my prayers.
Rachael, it sounds like you, your sister, and your friends are already on top of things .
A comment about documenting her questions... For many years now, I have kept a medical journal. In it, I have a section for:
<ul>[*]General Medical Information/Medical History (previous health issues, allergies, blood type...)[*]Emergency contact information[*]Doctors' contact informations (name, specialty, phone number)[*]Current medication list, both prescription, OTC, and supplements (including dosage and other instructions)[*]A running account of me health (diary formate)[*]Questions for my medical team and the answers I get[/list]
In addition, I keep a folder for lab test results, letter to and from doctors, etc.
That might sound OCD but I can't tell you how many times it has prevented a call to the doctor's office to ask an important question. Sometimes those questions just jump out of my mind the second the doctor's foot hits the floor of the examination room