Shadow in chest is recurrence
Comments
-
I will Claire- thanks. Not feeling too bad about wig appointment and am involving my 14 year old daughter in decision making.
Bless her- I worry about her most of all.
0 -
Liz - 14 year old girls are sometimes better than us with hair and makeup.
Involve her and smile, you are helping for the future. We are all rooting for you. Let us know the details.0 -
hi Liz,
Only when you have time and feel up to it - let us know how you are going...
A cyclone will pass by Brisbane today - schools closed etc - I sit looking out at a river bank in dense summer rain (no wind yet) - the destructive and healing forces of nature.
A pot of Japanese tea - Gyokoru.
Hugs aplenty
0 -
Wildplaces - stay safe.
0 -
All good.
Thank you
0 -
I am guessing Liz is too exhausted and overwhelmed to update right now or maybe having a break, but I heard from her after she saw my Onc as a second opinion in london a couple of days ago. Having recommended him I'm glad to say she said it went well, he was very positive, talked about oligomets, told her of another patient doing very well long term, gave a treatment opinion and referred her to a colleague he trusts more local to her, where her husband works and she can be treated. From my own experience he speaks with great authority and gives you wise action plans and words of hope to hold on to. I so feel for her last few weeks of shock and turmoil. But she seemed relived to have a way forward. What a lovely brace lady.I'm sure she'll be along soon with her own account
0 -
Hi Sarah
Thank you for posting this summary. I started a new thread - second opinion update which some may not have seen so thanks for your update.
- We were exhausted after the meeting in London and I still feel the same today. It has been such a roller coaster over the last 4 weeks. Thank you for saying I am brave but I don't feel it! There was a sense of euphoria after the London meeting but I've dipped a bit now as I face another wait for the York referral and of course steel myself for the treatment.
- I have now moved on to nightly Fragmin anti coagulation shots in my stomach- hubby has the task, bless him! So I've just switched drugs. I am getting SE from this ( hope it's this!) headaches, mild aches, sinus pressure and fatigue. The day before London I had a migraine- aura first, headache and a weak leg. So that set me off worrying. Leg weakness gone now and it is a common SE but my point is this- I already feel pretty lousy on this drug regime, never mind what is to come.
- I did mention the migraine to the onco but he put it down to Rivaroxaban and didn't question me further. It is difficult to prioritise points in a 40 minute meeting and to be honest I am happy to place blame for headaches on this medication. They are not worse on the morning and on a DVT forum I read that people often get symptoms like this. The fear remains though.
- Bumping in to people ( not literally/ ha! )- at the train station my dept were waiting to take some A level students to London. So I had my first meeting with them post absence from work. Not easy- how I wished I was taking their journey to the west end and not mine! I keep wondering about when/if I will return to teaching.
- Bone scan is Sat and results Wed. It's getting harder to go to each appointment at my local hospital as its always a long wait followed by bad news.
- Anyway huge thanks again to you SSinUK for reaching out to me and giving me referral details and to those who have followed. I will post on here as I know some of you are not Stage 4, whilst also posting on S4 forum.
Liz
0 -
Liz, I feel your pain and difficulties in the decisions you have to make for treatment. Stay strong and positive.
I don't know if this is the proper place to post but hoping to give you encouragement. I was diagnosed with recurrent chest wall breast cancer. My orginal breast surgeon wanted nothing to do with my case. My tumor grew out of underarm lymph node and attached to chest wall and grew down the side of ribs 2-5. The tumor grew around the brachial plexus nerve that's why the amputation. Radiologist and oncologist fought for me and got an orthopedic surgeon involved. I just had my whole arm amputated (this is why orginal surgeon wanted nothing to do with my case) and parts of ribs 2-5 removed then a plastic surgeon rebuilt my chest. My orginal surgeon told radiologist, oncologist and orthopedic surgeon "why amputate her arm and put her through this when her cancer is only going to return". This surgery should have been my decision instead of sweeping me under the rug. My cancer had been contained to the xhest wall for almost a year prior to my surgery March 20th. Arm amputation is not protocol but if it saves my life I can live with one arm. All of my doctors are very confident that i will remaim NED. I came home from the hospital March 27th. I am doing as well as can be expected and learning to adapt to having one arm. My cancer is very rare only 2% of women get it Metaplastic Spindle Cell triple negative. I hope my story gives all hope and encouragement with their journey. I am now stage 4 after this diagnosis. I plan to live a long life, be happy, strong and positive.
0 -
Hi Div
I am somewhat lost for words and overwhelmed by the spirt of kindness in your post, having gone through so much. Thank you for reaching out to me at this time.
I feel right now at this moment that my words will be inadequate and yet I normally rely on words; have been an English teacher for 24 years.
But here goes: your case must surely be seen as a key example of the vital importance of being one's own advocate. It is clear that you fought very hard in the face of total opposition to tackling this cancer head on. There are practitioners out there that are unfortunately prepared to go for treatment options that focus on the average prognosis rather than aggressive protocols. I'm not saying it is common but I have read a lot of posts on here where ladies have pushed and a different outcome has occurred. I hope I don't offend anyone in making that comment: it is just my observation having read experiences on this forum.
Again, I think you have exhibited true grit and I know that those of us fighting this disease can feel uncomfortable with the brave label but your positivity shines through and, you have achieved your goal of NED and I am very confident you will maintain that status.
Today you have given me that extra inspiration to keep fighting and there are other super heroes who know who they are that have helped also. I feel a failure in a way because I have been so needy over the last 4 weeks and don't know how much help I have been to others? 😟
The second opinion in London was not dissimilar to my home town but the vibe was more positive and I have a more hopeful outlook. My mass is parasternal 29mm but close to major blood vessels. This appears to make it inoperable and not a candidate for cyber knife but I pushed on both to attack it on multiple fronts. My original BC surgeon frightened me to death by focusing on the " couldn't be in a worse place" aspect, whereas the Professor in London didn't raise this and talked about it being in one place and there was no immediate rush for THP to begin. Of course I have to pray it will shrink!!!
I face a bone scan in the morning and again my advocacy alarm is ringing: will a bone scan be accurate/ more accurate than my CT or is MRI better; the latter being a costly option for our NHS.
Anyway I hope you will keep me posted on your recovery. Your story has helped me and I know will help many others.
Huge hugs
Liz x
0 -
Hi Liz, thanks for responding. I just wanted you to hear my story so you stay positive and don't get discouraged. That's great news about 2nd opinion. You need that is upbeat and positive and supportive. I am so greatful that my team was and is supportive, caring, confident. My team is so supportive that they hug me call me to check up on me. My social worker even calls to check up in me. They said they have never seen someone as strong and determined as I am. My orginal surgeon was so against the amputation that he didn't even tell me that the arm would have to be amputated. In conversations with my other team doctors my orginal surgeon would have just done chemo and my cancer would have spread and I would have died. We as the patient really do have to advocate for our treatment. There are alot of great people on this site with good advice.
I wish you the best!
Hugs and prayers!
Keep us updated.
0 -
DiV,
Stunned, speechless - in awe.
I have no words - you are one incredibly tough lady.
I believe you WILL live a long and happy life.
0 -
hi Liz,
Multiple scans are used as complementary.
Bone scans will show just that and probably best for ribs.
MRI is good for soft tissue and spinal cord/nerves/joint surfaces - fine detail.
CT scan with contrast - will do a bit of both of the above - add the PET and you get the higher glucose uptake areas...
They all have sensitivity and specificity quoted with them and of course false negatives and positives...
Add to the images themselves the experience of the radiologist and you have another variable in the mix of reporting.
Probable the best approach is to have multiple modalities of looking at one area, establish a baseline and not hesitate to ask for a second radiology opinion if something feels wrong.
Exhausting
My thoughts are with you today...
0 -
Hi Ioana
Just got back from scan. An extra set of images were done for sternum and ribs which is the consultant being thorough.
Major anxiety now. The radiologist didn't reveal anything but then they aren't allowed.
Results Wed- I can hardly bear this. It never ends!
Breast care nurse said they weren't too concerned about bone mets???? What a crazy world I find myself in.
I feel foolish now for kind of being reassured by the 2 CTs I had: one with contrast, one was fine needle biopsy CT. being told they appeared normal feels like false reassurance now.
Going to take Lucy to cinema in an attempt to shut my head off.
Hugs guys xx
0 -
Hello Liz,
What did you watch at the cinema with Lucy?
Any plans for the week?
Rads finished - ok, but my mind is sluggish and I do not do fog well. But then who does??
I am well enough to want to do stuff but not well enough to do it in my mo jo - which makes a little twisted ...
It's school holidays here so will head down the Coast for a few days.
0 -
Hi Ioana
I am planning to take Lucy another time as we arrived late- not very organised so had a coffee break in a cafe instead. I have just had a hysteroscopy so on paracetamol and resting. No polyps and lining looked smooth but biopsy taken as precaution.
Bone scan results tomorrow. Dreading this appointment. It's at 2.40pm. Wonder how a met dx will alter things?
Still waiting for York referral. Beginning to wonder if I've done the right thing as chemo was due to start Fri.
Give yourself plenty of time to recover from this end of treatment phase is my advice. This isn't an easy time either. I'm pleased you are teaching this point though, we have all been through so much.
Take care my friend x
Liz
0 -
beauty and the beast
0 -
hi Liz,
Good to hear from you.
There is a Turkish proverb " a cup of coffee commits one to forty years of friendship"
not back at work yet but hopefully in the next few weeks...my son is on holidays - Year 1 😊.
Have you decided to have chemo in York ? How far is it?
0 -
love that story ....
0 -
Liz and Wildplaces - sharing some Huckleberry coffee with you from Southern California. Cheers and rooting for both of you. Liz you are brave, I had my CT scan last week and won't see Dr until Monday. ugh So understand scanxiety ever so well. Very curious to what your next meds will be.
Ibrance + faslodex+ arimidex is doing very well for me so far. (())Claire
0 -
Hi to everyone,
After an agonising 2 hour wait I have a clear bone scan and am still in theory oligomets at this point. I am meeting with my new oncologist in York on Friday and hope to start next week. Today the oncologist said that the chemo protocol gets good results (THP)
Hopeful news. Thanks to you all for staying with me. Obviously my new onco may have new ideas etc so will post again Fri.
Liz x
0 -
Here it is Liz - we are about 50 km north of Byron Bay - these beaches are made for walking.
lalady1
I have never had Huckleberry coffee before but it sounds delicious - about to google it😊 ☕️
I imagine you are not short of beaches in Southern California - nor of wine - you have made me smile and for that I thank you!!
Wishing you both a relaxing peaceful end of the week.
Liz - you have done so much hard work over the past few weeks - nothing to do for now except sit and let the drugs work, and they will. We are all here.😊
0 -
Stunning photo Ioana. How I wish I was walking on that beach with you right now!
0 -
thank you Liz - I wish you were too - I sent it because although I don't presume to know - I kInda thought you might like it
hope tomorrow goes smoothly
0 -
Liz that is great news! Praying for you today that appointment goes well.
Loana beautiful beach! Same as Liz i wish i was walking that beach.
0 -
Ioana and Liz - may we all walk that beach together.
I will bring the coffee! DiV you are an inspiration. I will add a nice CA wine for a sunset beach walk. Just close your eyes... Liz - hope your York meeting goes well today, please relax this weekend. I get my PET results on Monday. Claire
0 -
Hang in there JackBoo!! I hope your other appts and reports will all give you the best outcomes for supporting your strategy going fwd. I've been out of the loop here for a spell and sorry to now see you've been going through the wringer
0 -
Hi Claire- the wine sure sounds good, if I can ever get off the anti coagulation drugs!
I will be checking back with you Monday after your PET results. Thinking of you!
Chirps- yes eventful week. Not many parts of me know that haven't been scanned!
Diana- did you get any further with the pain meds?
L x
0 -
lalady1, thank you for the vision of beach ang glass of wine i enjoyed it. I'm going to Florida in October with my Aunt, Uncle and boyfriend. My Uncle's sister owns a condo in Naples so expense isn't too bad we just pay for airfare and buy food and cook at condo. Naples is a beautiful area, too expensive for me to live lol...My aunt and uncle said this is my recovery trip for going through a year of treatment. I am so looking forward to it.
Wishing you the best on your petscan. You'll be in my thoughts and prayers for NED.
Hi Liz, I go tomorrow for follow up appointments with orthopedic surgeon and plastic surgeon. I will inquire about pain management. I know I don't want to be on the oxycodone for too long. As of now I'm on oxycodone 10mg every 3 hrs and gabepentine 300mg 3 x's a day. Day before yesterday I started taking a Tramadol 2 x's a day and that seems to help. I know tramadol is for nerve relief.
I just wanted to say thank you to all of you for the support. For a long time i was afraid to post due to my condition and arm amputation cause I didn't want to scare anyone and have them thinking this was going to happen to them. My case is very rare and not protocol. So thank you for all the support!
0 -
Hello One and All,
Di
Please post as you feel like it - everyone has a burden with breast cancer - yours is a tough one but I see much hope.
Tramadol has some opiate action through the mu opiate ( no it's not a cow 😱 - they are a few of them and have Greek ...) receptor but considerably less then morphine - like of the order of thousands less. It seems to act through serotonergic and noradrenegic receptors at spinal level - so your summary of it is good for nerves is spot on!!! max dose quoted is 400mg /day and they come in an extended release formulation.
An oldie but a goodie to consider asking about would be a 10mg ( very small compared to its antidepressant dose) amyltryptaline - Endep - at night. If they are young trendy boys ( aka esteemed surgeons 😊) they will wonder where you pulled that one from but the more experienced will smile. In higher doses and elderly patients it may have anticholinergic effects that lead to tachycardia, dry mouth...not sure if right for you but one of the Mayo list ones.
California wine (yum!!!), rustic crumbles of English cheddar, beach, bitter coffee with sweet chocolate or dark chocolate with coffee (anti-inflammatory diet on tea brake 😉) - ladies I am very fond of your style.
0 -
Liz,
Yep - my mind always has a PS
How is the cross over anticoagulant to chemo planned?
I have no clear idea - but chemo will affect your platelets ? Yes I know not the clothing factors as such ...
And is there a plan for Neulasta or not with your chemo regimen - not everyone ( I can't work out the indications to be honest but I haven't looked much into it) get Neulasta with Taxol.
Get a script for Claratin before you start - antihistamines - help with any funny bone pain.
Given the Herceptin - did they suggest a Transthoracic Echo or some baseline cardiac test?
I am such a pain in the proverbial derrière - tell me to bugger off....
And of course you don't have to answer - just tells us you love chocolate 😊🍫
0
