Mar 8, 2017 09:25AM ml143333 wrote:
I don't have any magic words other than I wish I could change this for you. Praying for you and your family.
Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.
Posted on: Mar 8, 2017 07:32AM
I am due to have a CT scan biopsy of a 29mm shadow in chest tomorrow. Having been told 50/50 chance, they have said this morning that it is highly likely to be Mets and not operable.
I have 3 teenagers and a fully supportive family. Positives: small mass and no evidence yet of other mets although I haven't had a full bone scan yet just the neck to pelvis area CT.
consultant talked about new treatment options from 6 years ago when I was dx with IDC with node involvement and 2cm breast lump. She said not curable and their aim was to get me back to living my life and said years. Is this just what they tell you.
I am hours on only from this news. Crying a lot. Can anyone add any positives.
Liz ( jack boo)
Posts 1 - 30 (1,423 total)
Mar 8, 2017 09:25AM ml143333 wrote:
I don't have any magic words other than I wish I could change this for you. Praying for you and your family.
Mar 8, 2017 12:40PM jackboo09 wrote:
Hi to you both who have replied to me following my post. It is 8.30 now and I was given the news at 10 this morning. They have given me a blood thinner injection so that I'm still protected over duration of biopsy. I feel ill with this news and yet have to face an invasive procedure tomorrow but they are moving fast and I feel confidence with the team who will meet next Tue to discuss my case.
It would be wonderful if this shadow turned out not to be cancer but it's unlikely and at least this way I won't have the shock on results day.
I had thought it was in a lung in which case I suppose it could've been operable. This is in chest but only scan will now provide an accurate location.
Thanks weare connected for your words about the kind of life I can expect now. Hope is so important. If I can have some then I will handle this better.
I think it's likely that I will need blood thinners indefinitely now. The thought of chemo and hair loss etc fills me with dread. It isn't easier because I've done it before- harder as I am well now, but won't be once chemo starts.
Much love for your support and the all important HOPE.
Mar 8, 2017 12:58PM Wildplaces wrote:
Hang in there - you will not know exactly what you are dealing with until you get the biopsy result.
The treatment of metastatic breast cancer is changing so rapidly and all the stats are behind in prognostic value.
The area of immunotherapy/targeted therapy is gaining momentum with clear indications that treating cancer of any type/stage should be multi modal - ie multiple lines of attack work best.
Visit the metastatic threads - they have lots of ladies who are doing ok/ life travel/ work on treatment for many many years.
Also look at oligometastasis
generally it would be rare to have distal limb mets - so if you had ct chest/abdo/pelvis - MRI brain - the money is that is all there is
Breast cancer is a strange place where literally anything can and does happen - there is good and bad in that.
Mar 8, 2017 01:10PM Wildplaces wrote:Also Liz,
Mar 8, 2017 02:38PM jackboo09 wrote:
Thank you so much for your replies. I am so very tired now. Just time to say that I have skim read the linked article. I did know about oligomets and it gives me some hope. As I said earlier from the neck to my abdomen area I am clear ( some increased thickening of endometrium) but that could be peri menopausal changes. It's 11 mm and I think potentially curative if it is early stage womb cancer.
I like the sound of the multi treatment options, just not chemo. How I wish I could avoid it and maybe do rads or ablation therapy instead? I will have to wait a little longer for the HER 2 result- might have Herceptin.
Mar 8, 2017 02:48PM proudtospin wrote:
sorry for the diagnosis, just got my own reoccurance news
I now treat myself to ice cream before bed and any other little things that make me happy
Mar 9, 2017 02:11AM Wildplaces wrote:
the actual biopsy should be under general anaesthesia or at the very least heavy sedation so it might take you a little longer to post :)
Once you know what you are dealing with...
Please check out the different mets thread of ladies such as zarovka, Bestbird ( including her generous free guide - you get an email with an attachment - it's a great resource) , Shetlandponey, heidihill ...you will find some incredibly well informed ladies and inspiring stories
You will find information on simple but important things such as:
- nutrition - anti-inflammatory diet - Dr Weil
- yoga positions to increase bone density
To more specialised issues on
- integrative oncologist that consult by Skype - accredited by American Board of .... Dr Brian Lawanda probably stands out.. but there are others
- mainstream oncology - multiple lines of antihormonal therapy, targeted, immunotherapy - trials and references...
(Lots of information on the "new" CDK4/6 inhibitors - we don't have them in Australia under Medicare or any care but they can be accessed by trials - the Americans have Palbociclib and are waiting on Ribociclib..)
Hang in there - you HAVE time to make the right decisions for you.
Mar 9, 2017 02:37AM jackboo09 wrote:
I feel much strength for your support. Still waiting for a bed. Long waits here in UK. Anxiety dreadful. Told it will only be a local and could be painful.
I thank you for everything you have posted and will look into it all when I'm more focused.
Could do with sedation.
I'll keep posting if that's ok.
Mar 9, 2017 07:37AM jackboo09 wrote:
Am sitting up in a bed resting after the procedure. It was uncomfortable not agony and the Dr was lovely. He didn't have to go in very far and I keep thinking please let it be operable. Anyway I got through the wait and it's done. Home to our teenagers soon. Thanks again to anyone who has posted.
Mar 9, 2017 11:09AM jackboo09 wrote:
thank you hopeful
It has been a long day. Waiting on my medication then can go home.
Trying to block out the next stage.
Mar 9, 2017 01:12PM Wildplaces wrote:
Well done -enjoy your family now!!
(If this was done under local it must be reasonably superficial.
Liz - where you told mets or local recurrence?
There is a difference in both treatment and prognosis.
That is potentially good news.)
Rest well and take it slowly until you get your results.
Mar 9, 2017 01:18PM Wildplaces wrote:Ohh and one more thing do not spend too much time alone while waiting for results
Mar 9, 2017 02:07PM jackboo09 wrote:
I finally walked through the door at 8pm. Some discomfort now and the blood thinner injection has made me feel a bit off it- headache and nasal pressure. Dealing with DVT as well as this shadow.
Totally confused about where it is and what that means in terms of type of recurrence. It is slightly left of the Middle area between breasts and well below collarbone. He didn't have to go in far with the needle to biopsy, so is this chest wall.
Nothing else found yet. Got pelvic ultrasound for investigation into endometrium thickening. Been told a Tamoxifen can cause this and being peri menopausal too,
The BC surgeon classes this as secondary cancer and was clear it wasn't curable. I get the feeling that they don't buy into oligomets here in Uk, although it could be different in London. I live in Yorkshire.
Life does indeed go on and I can relate to your point about your son and feeling better when you are near him. I got back tonight to English homework. My 15 year old son had the paper ready! I am an English teacher so can hardly say no I can't help him. I'm their mum and as long as I can will do my best to look after all 3.
Mar 10, 2017 12:15AM Wildplaces wrote:
from what you are describing there are several possibilities:
- local recurrence of initial tumour in breast or area where breast used to be - this might involve chest wall - muscle or bone - local recurrence
- metastatic disease - spread by blood or lymph to sternum - breast bone
- metastatic disease to mediastinal lymph nodes ( but usually this a deeper and complex biopsy...)
- lung lesion
- something out of the box that no one thought about...
A biopsy is good - essential - it will tell you what organ and what receptor status your lesion is.
In the strictest sense if this is cancer your lifespan will be shortened - so he is correct no, it's not curable. It is likely that you will see doctors and be on some form of medication for a long time. What he does not know, and No ONE knows about an individual is how long or how? And women have been rewriting the oncology books for the past twenty years.
If you are looking for inspiration - Google Sandra Spivey - who has been living with bone mets for more then 17 years. But she is not the only one - there are multiple posts on this site of women 6-8 years from metastatic diagnosis and the research field is moving and you don't know what treatment options will be available in 6 plus years....
At the moment particularly in early single organ ( and I think the endometrium will turn out fine - a crazy hunch mind you...) disease we just don't know how or for how long someone will respond to therapy, and there multiple lines of therapy available.
This is where the mind and taking care of yourself comes in - the better shape you stay in the harder you will be fighting the disease ( there is a huge immunological component) and the more likely you are to withstand various therapies.
Rest for now.
I'll be following this thread - so if you can let know what your results are.
Mar 10, 2017 12:30AM Wildplaces wrote:I keep doing this one more thing ..thing
Mar 10, 2017 01:46AM jackboo09 wrote:
Thanks again for this valuable input; particularly at this stage of uncertainty. I feel quite a bit of negativity from last Friday's appointment. There are surely worse case scenarios than mine but I felt like I was the one promoting the positives. Forgive me for my layman's terminology here but this is what I have been told:
Highly likely to be BC mets ( secondary BC)
Appears likely to be inoperable ( from 1st contrast CT scan ) may be different after yesterday.
Not in lungs or any other organ. Not in sternum - I asked specific question. I presume not in ribs? Didn't ask about lymph nodes, again presume these would have shown up.
29 mm shadow ( called a mass at 30 mm) about 3-4 cm in from the description radiologist gave. Appears then to not be too deep.
I still have my reduced size left breast as my original surgery was a lumpectomy and breast conserving surgery. So I suppose this could be spread through breast tissue and/ or lymph nodes. I had full clearance of left underarm lymph nodes and one intra mammary was also positive.
Am resting up and trying to gain strength and positivity from yourself and others on this forum and my innate hope that there are some "good" aspects of this dx- who knows.
Mar 10, 2017 01:53AM jackboo09 wrote:
Oh sorry and one more question- I always thought that this kind of spread to the chest was local too and in that sense not distant metastatic disease. Confused!
Mar 10, 2017 02:14AM - edited Mar 10, 2017 02:16AM by Wildplaces
Well I am not sure what to make of it ....but nothing inside the chest cavity is good news.
My understanding is (and I am not an oncologist) that local recurrence prognosis can generally be better then distant metastasis - although the histopathology - how aggressively these cells are dividing and what receptors they have plays a role too.
The same way that bone mets alone are generally more treatable than bone plus lung or bone plus lung and liver...
You will have to wait until you get your results to be able to understand what your next steps should be ...and once you have a treatment plan in place you'll just get on with it.
It's horrible waiting.
Don't stress too much about negativity - most medicos struggle with delivering "bad news" - it's easier to say " you have this and I can fix it"
My oncologist said to me at our first prechemo discussion
" I suppose you want to talk about the numbers?"
No, because I am not a number but a person.
Having said that he is knowlegeable and almost funny if you dig at that side of him, and I am slowly learning to trust him.
Mar 10, 2017 02:36AM jackboo09 wrote:
Yes I phrased the good news poorly there. It is all still very worrying. I suppose I was still hanging onto the fact that it's only one area for now. At the end of the day I'm second guessing here. If chest BC spread is any worse than other mets than maybe I'm better off not knowing!
I hope you are ok. I feel I need to apologise for these one sided chats. I feel for everyone going through this hell.
Mar 10, 2017 04:57AM Wildplaces wrote:Hello Liz,
Mar 12, 2017 02:02PM Wildplaces wrote:Hello Liz,
Mar 12, 2017 02:56PM Hopeful82014 wrote:
Ioana, I too had a hard time absorbing that it was really me going through all the tests and treatments - and radiation was particularly surreal. Thanks for phrasing that so neatly.
Liz, I'm thinking of you and hope you've gotten more (and more solid) information to work with and plan around.
Mar 12, 2017 03:07PM jackboo09 wrote:
Hi wild places and hopeful
Thank you both for checking in on me. I have had a mixed weekend. I am still adjusting to the blood thinning medication and so physically feel off it as well as coping with the new dx. It is still a combination of dark, tearful moments and some hope. I am trying very hard for the sake of my family.
Tue will be very hard. I'm so scared. I am trying to gather info but need this tumour biology first. I want to live. I don't want to accept the stats!
Love to you both
Mar 12, 2017 05:19PM Wildplaces wrote:Hello Liz,
Mar 12, 2017 05:34PM Wildplaces wrote:and ...
Mar 13, 2017 02:29AM jackboo09 wrote:
Good morning Ioana,
Thank you for those posts and the fresh optimism they give me . You are very knowledgable and I agree that it is crucial to be one's own advocate. Knowledge is power! I have decided to tear up the stats as I am a person and in relatively good health, DVT aside. I do hope I am not given stats on prognosis because I definitely do not want them.
Will take a pen and paper tomorrow and ask for a copy of the lab report for my second opinion. Hoping to feel better once treatment plan is discussed. I fear chemo again though and losing my hair.
Talking to people on this forum has been, and will be the catalyst to change my mindset to a more positive outlook. Just reading about the treatments helps. Wanted to ask about low dose chemo again. Do you mean that they are finding good outcomes with lower doses and therefore feel they might even outweigh the harsher regimes? Tablet form chemo was mentioned to me at last visit but I'm not sure I'd feel safe at home waiting to feel ill and not having any monitoring?
Thanks a million for the continued positivity.