Mar 13, 2017 09:27PM Wildplaces wrote:
Good morning Liz,
Just PM you.
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 9, 2017 02:32AM
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 31 - 60 (1,464 total)
Mar 13, 2017 09:27PM Wildplaces wrote:
Good morning Liz,
Just PM you.
Mar 13, 2017 09:32PM Wildplaces wrote:
Here I go again.
You can just imagine working with me...yes I put in some long hours before all this.
It is important to know things.
It is equally important to have some cancer thinking free time.
Mar 14, 2017 01:40AM Aliciastewart63 wrote:
You have been so helpful. Very knowledgeable information. I was diagnosed with a mass in my medialsteinum and neck. My surgeon told me My cancer was vanilla and should go celebrate. On Ibrance and lexitrole. I don't feel like celebrating
Mar 14, 2017 05:09AM Wildplaces wrote:
When you get a chance it might be helpful to pop in your information on the profile - making it public will help others with a similar diagnosis tell you about their journey.
May I ask are you in U.S. Or UK - I am trying to figure out if Palbociclib is available in the UK?
It's a powerful combo - you will see many women on the Ibrance thread doing well with it.
I would urge to read and consider joining - there are some very sassy and strong ladies posting good solid stuff there - you will find lost of support there
If it is a recent diagnosis - you will feel down for while - and lack of sleep and anxiety will compound these.
IMO best to treat sleep first, then anxiety then anything else that you can't shake and hangs around...
I think it should be a sign the size of the Grand Canyon in every breast clinic:
- get adequate sleep and rest/ control stress by whatever means you can (sometimes that means just walking away from a situation)
- daily exercise (The American cancer council guidelines are easy to google and posted on this site )
- anti-inflammatory diet (Dr Weil is time tested but a balanced diet with unprocessed grains and multicoloured fruit and vegetables is a start)
For a body to keep up with the punishment of cancer treatments over time it must be given lost of solid TLC!!
Take lots of care!!!:)
Mar 14, 2017 05:11AM Wildplaces wrote:
don'tyou hate autocorrect - the spelling bee must have left my nest on that post but you get the drift of it.:)
Mar 14, 2017 12:29PM Aliciastewart63 wrote:
You are awesome I live in the US. Maryland. I need to wrap my mind around this. I thought I was cured. No sweat....I still run 3 miles everyday and will try eating healthier. This is different than the first time. But I will continue to fight and learn to love this new normal.
Mar 14, 2017 01:16PM Wildplaces wrote:I am on the Gold Coast Australia so we do not have Ibrance outside trials.
Mar 14, 2017 01:20PM Wildplaces wrote:
Good morning Liz,
We are All thinking of you!!
Mar 14, 2017 03:00PM Hopeful82014 wrote:
Liz, just wanted to send you a hug and some sympathy. Having rotten news and taking a drug that makes you feel off is a bad combination. I hope you're starting to feel a bit better, physically.
May I suggest that you not only make a list of questions for your consult but also record your appointment? Many phones have that function. I've found that it can make a world of difference to be able to go back and listen to the discussion afterwords. None of my doctors have objected, by the way.
Alicia, I'm thinking of you, too. I hope you'll get through the storm without losing power.
Take care of yourselves, both of you - and Ioana as well.
Mar 14, 2017 06:31PM jackboo09 wrote:
Thank you for staying with me right through this. I have just woken up and Richard is making me a cup of tea. He is working from home today and my appointment is not until 4.15pm.
I haven't been doing any exercise since being on the blood thinners other than moochingabout the house and one hour long walk on Sunday. Today I will visit my parents this morning and go for a walk with Richard this afternoon.
The timing of this appointment is awful. Ideally I wanted adjustment time before the kids walk through the door. The boys have practice exams this week for their GCSEs in June- am mindful of not adding to their stress.
The Rivaroxaban is getting a little easier. Main SE of blood thinners appears to be fatigue. I try not to think about bleeding which is common. Kinda have bigger fish to fry at the moment! I move onto a lower daily dose in 8 days time. Some DVT forum posts suggests that it gets easier after that. I am currently in the intense treatment phase- how I wish it was just this problem.
Thank you does not seem a sufficient response for your support at this time. But know this- you have really helped in terms of encouragement, Hope and vital information about treatments.
Mar 14, 2017 06:56PM Wildplaces wrote:
good morning Liz,
Sounds like you are exactly where you should be - surrounded by those who love you!
Mar 14, 2017 07:07PM Wildplaces wrote:
Thank you - very kind.
Yep wrapping up the rads sessions and running out of funny things to say to the tech who smile and say just relax...
I am half naked - with missing boob wrapped in a cling wrap - Mepitel - second skin extraordinaire from New Zealand - on a cold hard table with beeps and blips all around...and whose serving champagne and nibbles ???
I mean 'just relax..,'
Having said all that they are really very human and I believe good at their job.
I could easily rant on about other funny moments in the forest that makes up the medical system - and I do not wish to sound ungrateful - because I am not - I know my treatment is solid, and feel fortunate with my care.
But gosh people say some odd things when they are on cancer ground.
Wishing everyone well,
Mar 15, 2017 09:19AM Hopeful82014 wrote:
Liz, I hope you're in bed and sleeping by now but wanted to send some support your way. I'm sure this was a long and difficult day. As to the boys' exams, keep in mind that these are practice exams rather than the real thing - thank goodness! Still, I know that feeling that one's done poorly on a practice can sometimes destroy one's confidence and we do not want that! So I'm crossing my fingers for them, too.
I hope you had decent weather for your long walk today. Sometimes that's the best way to process these blows.
Ioana, how cool that you're using Mepitel. I would have loved to have had it available when I had RT - all the research on it sounded most encouraging. In the end, I couldn't obtain it but my skin did great anyway - I truly over-stressed about radiation. But the thing about RT is that it's so individual and variable - you never know (for sure) how you'll do or how you'll feel from one day to the next. It's something of the cancer experience in a nutshell, isn't it? When do you finish?
Mar 15, 2017 09:31AM jackboo09 wrote:
Thank you for your post. So wonderful to know people are thinking of me. I'm in a lot of distress and have a GP appointment tomorrow to get some anxiety meds. It is the location of this thing- I think it's in an internal mammary node and I'm so very scared, despite the docs saying lots of treatment options and " years" I'm in the dark at the moment and of course that is making it worse.
The boys did well today: English Literature, Chemistry and a maths paper.
Mar 15, 2017 02:40PM Hopeful82014 wrote:
Dear Liz - Hooray for your sons! I'm sure that gave all of you a lift. However, you are going through an extremely trying, distressful situation and bits of good news pierce but don't remove that heavy veil of fear, uncertainty and anxiety. I think anti-anxiety medications are almost a necessity in your predicament and wish you'd had them sooner. It doesn't sound as though you got much solid information from your appt. yesterday, which is really disappointing. It probably would have helped both you and your husband. I think that once you know what the actual facts are you'll be in better shape but you're dealing with a lot of uncertainty and a rather unusual situation and that's very draining. All I can say is that, until you know what the findings mean, you have too many scenarios for your mind to process. Thus, you can't make any headway in sorting things out and getting on with grappling with the issues. (Do cling to the good news and milk it for all it's worth.)
It's a horrible place to be stuck and I do hope you'll be able to move through it and on to the next step soon. In the meantime, I'm sending support. I wish I could do more.
Mar 15, 2017 03:06PM Wildplaces wrote:Hopeful,
Mar 15, 2017 06:05PM jackboo09 wrote:
I am just waking up after an average night sleep. I did wake at 4am and check in with Ioana! All these miles between us and yet the support brings us closer.
My children do provide a welcome distraction from all this. Apart from that, I am needed. On my walk yesterday my son Jack was texting me over his lunch break. The English exam was at 1pm so he was bombarding me with questions about Macbeth and a Keats poem. Escaping into Literature removes me from the everyday, albeit briefly. My boss sent me a lovely text with some reading suggestions. He doesn't know the full extent of this yet.
I hope today brings not only what this is but some hope to treat it quickly, I am feeling some intermittent pain in the area and that worries me. I do hope they will act quickly. The system here is that all cases of newly diagnosed patients are discussed every Wed morning between 10-12. If my results don't show up till 2pm ( same time as my appointment) then I will only have the breast consultant's opinion, not the whole team.
Anyway I will keep posting and an ending warm wishes to you.
Mar 15, 2017 06:27PM Meow13 wrote:
jackboo, I remember helping my son with research for his high school papers. It helps keeping your mind thinking about things other than cancer. I read twice you were dreading chemo and hair loss. If I have do chemo in the future I am going to cold cap to save my hair. I do not want to look or feel sick.
Did you find out it the recurrence is in the chest wall? I think that is still local and treatable.
Mar 15, 2017 06:51PM jackboo09 wrote:
Good to hear from you. I find out my results today hopefully, pending a further delay. There is a 29mm shadow in my chest. An A&E doctor did a recent X-ray and I heard her say inter mammary node. I have found a 2010 article about a woman who had it removed. So far though my breast consultant has said- stage 4, highly likely to be inoperable. I had rads in 2011 so that may not be an option, hence my keeness to explore surgery. All this is conjecture of course. I am pessimistic, tend to look at the worst case scenario and I have some throbbing pain now. I hope to report back better news.
In the meantime keep the exam revision questions coming Jack- your mum needs other things to think about!
Mar 15, 2017 06:54PM - edited Mar 15, 2017 06:54PM by jackboo09
Oh and I may reconsider cold cap. My feeling is that I dont want the extra fuss and I have no idea if it actually works, last time I completely dismissed it but may be more open to it this time.
I am a teacher and may have to return to the classroom wearing a wig. Saving my hair in that sense sounds appealing.
Mar 15, 2017 06:56PM Wildplaces wrote:Hi Liz,
Mar 16, 2017 04:46AM jackboo09 wrote:
Diagnosed this aft. I meet with oncologist next Thur. Getting second opinion on surgery route.
er positive. Not conclusive for Her 2 but they presume it is.
Mar 16, 2017 07:49AM Sadiesservant wrote:
I'm so sorry that the mets have been confirmed. I had hoped that they were wrong for your sake. This is a very tough time for you but I think you are doing all you can by exploring your options. Once you see your oncologist you will know more. Unfortunately, the waiting is the worst part of this whole thing.
Please know that I am thinking of you and hope you have a clear plan of attack soon.
Mar 16, 2017 04:36PM Wildplaces wrote:
I am sorry to hear your news.
Spend time with those who love you this week/end.
Here we are all thinking of you,
Mar 18, 2017 10:02AM Wildplaces wrote:
Thinking of you!:)
Mar 18, 2017 10:26AM jackboo09 wrote:
Ah thank you. I have just been discussing a clinical trial for Ibrance with another lady on here. Not sure if I'll qualify or not- my biopsy being inconclusive and my premenopausal status could be barriers to treatment,
I'm hoping to be offered hormonal treatment at first because if it's chemo, won't that be exhausting options too early?
Also been reading about s thermostatic procedure that targets the tumour and sets off an immunological response. Have also now received Bestbirds guide!
Have you finished rads now?
Mar 18, 2017 10:48AM Falconer wrote:
Liz- Holding you in the light.
Mar 18, 2017 11:19AM jackboo09 wrote:
I am waiting a treatment plan and tonight feeling despondent. I don't know what to expect, we all don't know to expect. This is such an individual disease.
I have read so my inspiring posts but also all the stories of progression. I feel like I am about to start on a hideous journey of illness.
Sorry- dark times
Mar 18, 2017 12:27PM - edited Mar 18, 2017 12:34PM by Wildplaces
If you are looking into hyperthermia - might be worth trying to PM zarovka.
I seem to remember she posted on it - VERY eloquent.
(Whether it's chemo type or antihormonals pivots on what they will think this is MOST responsive to. Chemo at stage 4 has to have thrown in it "long term good prognosis ..." minimise cancer burden or progression not responding - which you do not have.
To my mind it rests with the histopath...
I would be very interested in what the oncology opinion is)
Mar 18, 2017 12:33PM Wildplaces wrote:Ohh the rads - no - 9 to go...