Shadow in chest is recurrence
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Hi Lola,
First, I’m so sorry you find yourself here but you’ll find good information and lots of support. I’m not sure I will be much help with your question however. My mets showed up as pleural effusion and now there is thickening of the pleural lining indicative further growth of the cancer. I’m not clear on the distinction between that and the chest wall. If they are suggesting surgery perhaps it is quite localized? I have been treated with chemo and/or hormone treatments only. I don’t believe radiation is an option in most cases where the pleura is involved.
There are some additional threads with ladies potentially closer to your diagnosis (look at lung mets) but none of them are very active.
I have been following the liver mets thread Ioana (like to follow Z) and did see the post you are referring to. I did have a bit of trouble following it as it seems to be very early days but fabulous if some cutting edge work was closer to home.
Great tree Di. I love Christmas but no tree for us this year as we are still mired in renovations. Mind you, I have been joking that I can simply stand in the corner and twinkle. Six CT scans, two bone scan and numerous X-rays in the last year - I’m sure I must glow in the dark by now.
Over half way through the work week thank goodness. It’s a bit of a slog at the moment....
Sending virtual hugs to all.
Pat.
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Lola, I am falling asleep here in Victoria but will write tomorrow as I too have chest wall recurrence. I take it that there is a wait to see if pleural effusio. Is in fact MRI induced?
❤️Marian
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Hi all! Thanks for all the compliments on my tree. It's been a gray dreary day here today. Snow expected Saturday. No energy so turned tree on and watched tv.
Loana thanks for the info. As of right now i'm only taking the gabepentine. I also have this compound cream that was made for me Baclofen/Amitriptyline that i apply to scapula and chest. Cream helps for that. I also have lorazepam for at night to sleep if i need it. Most of the time i don't sleep until i'm totally exhausted. Alot of times i'm up 48 hrs. The phantom pain is worse at night which keeps me up. I know nerves are more active at night i wish they would go to sleep too..lol
Pat I love your humor! Great attitude! You could always get a little potted Christmas tree and put little ornaments on it. I wasn't going to put mine up but Terry said he'd get it down. So Terry ended up decorating it too. Thank god i left the lights on it made it easy to finish.
Marian hi! I too had a chest wall recurrence. Unfortunately it cost me my whole arm. My first bout with breast cancer i had a port and after my treatment ended i had it removed in 2015. Had new port put in December 2016. I'm glad i have a port too. Alot less pokes.
Hugs to all!
Diane
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Hello ladies! Big hugs to all - I have been catching up at work and dodging some of these LA fires! Yesterday the smoke and ash were all over the freeway. I met with my MO today - stable bones, now need to finish A-train and knock out the micro liver met. Plan is to scan at the end of Jan and decide what next pill will be. Here is a pic of my eco-green charity tree - I bought it decorated. No work, just plugged it in and added a few ornaments from the garage. Stay strong.
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Thanks Marian and Pat. For now there seems to be questions if pleural involvement is MRI induced or not. My MO called me yesterday as she wants to try getting me in a trial with Ibrance/letrozole (I think) so I am rescheduling my bone scan next week and now I have an u/s scheduled before Xmas that I am suspecting they may want to do a biopsy to confirm the attributes of the recurrence. I am wondering if they will do a biopsy of the chest wall and of this possible pleural if it shows on the u/s.
The timing of this is really not great, I have exams in the coming weeks and with all appointments and tests it will be hard to study!!!!
I will and see for now and I am not known to be a very patient person.
Thanks for your replies and hope you all are stable and doing well.
Lola
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Hello Lola,
Sounds like you have a good MO who is exploring options with you while getting together all the info on this recurrence.😊
My understanding is that as an imaging modality MRI sometimes overcalls things while ultrasound may undercall them. I think that is the question of what is seen on MRI being actually pleural involvement or not. It the result of margins between tissues image in different scanning modalities - a radiologist can only report what the films show.
" Djmammo" is a radiologist on BC, drop him a line under "MRI explained" thread, ask for his thoughts - I have asked him questions and got solid answers.
It's important to sort out if you have a local recurrence or you have local recurrence with pleural involvement. It's also important to sort out if that is all you are dealing with - it would place you in an oligometastatic category and given your age it may mean more aggressive initial treatment with maybe a long shot at a cure but hopefully many many years of controlled disease.
I know you are adjusting to this, at a tough time, but please find the time to explore ALL your treatment options - chemo, is radiation an option, targeted therapy - Ibrance, why and when was surgery suggested.
Roughly you want to know/have info on:
1. What they are?
2 What would be reason they are suggested?
3. Side effects?
4. Likelihood to work and for how long?
5. What might be Plan b and c if plan a is struggling
Probably the hardest question for your oncologist to answer would be if this local recurrence only...
"Should you go for a short burst of chemo ( well, not so short 6 ..) then follow on Ibrance or just go straight to Ibrance. I say that because I noticed you were on Tamoxifen. And would they need the biopsy results before making that decision?"
😊🌷🐣
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DiV~~Diane: I really have to concentrate on who is who but reread the last two pages again but saw your comment to me re chest wall recurrence and i bet you have posted on another thread about your loss. Do you mind my asking what happened? You could PM me. I see that your first BC was about a year before mine. I can't have surgery due to the tumour's tentacles hold on the neurovascular bundle and dx only Aug. 22. I have not really met anyone with similar dx.
Lola, Wildplaces response is very through. With regard to your MO suggesting Ibrance/Letrozole trial being an option sounds at this point as one of several options after more tests. I do wonder why she would say trial as opposed to right onto drug?
Pat, I took the ferry to Vancouver early today and fog big time here. I came to help friends (husband has very rapid possible demential onset and today is having another MRI, EMG, EEG and spinal tap. Makes my problem seem very small today. I am here to support my friend Elaine this weekend. Planned to fly back Sunday on Harbour Air but there has not been a flight in 2 days due to fog. I got a full cancellation even though it was non refundable as it looks like more fog ahead.
Last day of Ibrance Cycle 4 and feeling better than I was last week!
Have a good weekend everyone!
Love Marian
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Thank you ladies. Thank you Wildspaces for all the questions, it's helpful.
Marian - She called it trial as it is not approved (perhaps for premenopausal women) she did say though that everyone would be getting the drug there would be no placebo arm.
Wildspaces - chemo and radiation were suggested. The surgery came up if it were only a recurrence on the chest wall and if it would be approved.
I see the MO on Tuesday so will ask all of the questions and plans of action.
The oligometasteses sounds nasty....
Thanks.
Lola :-)
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Hi Lola,
Oligometastic would be good news. That means it is contained and more treatable than most. Once it has spread to multiple locations there is no cure, only management of the disease.
Let us know how your appointment goes. Hoping for the best possible news for you!
Pat.
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Thanks Pat. I did some research and learnt more about the term.
I guess I was thinking from an economics perspective lol ....don't ask lol
Hope you all have a lovely weekend.
Lola
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I had the trial medicine name wrong. this is the right one that my MO is trying to get me to participate in "
Study to Assess the Safety and Efficacy of Ribociclib (LEE011) in Combination With Letrozole for the Treatment of Men and Pre/Postmenopausal Women With HR+ HER2- aBC
Anyone using Ribociclib?
Lola
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Hi Lolis - my UCLA onc was part of the PALBO studies (Ibrance + letrozale). So far Ibrance appears to be more effective as a CDK 4/6 inhibitor (which requires pairing with and AI like or Letrozale) than Ribociclib. Abemaciclib is being touted as a more effective killer for pathway 4 on the CDK 4/6 highway and can be used without an AI. FYI I had an 18 mo run on Ibrance + faslodex which killed my lone lung met. However when it stopped working, I wound up on Afintor (A-phonytor) which was horrible and did not work for me. So I am finishing a 6 mo run on IV Abraxane and responding well. The plan is to move to a pill in February depending on my PET scan. So far my lung is fine, still some bone mets and liver uptake on right side. Hoping liver issues resolve. But you never know with this sneaky Mr. C. Nice to have you here. Liz and Div - are you holding up for the holidays? Iona - I had a glass of orange champagne at the boat parade last night. Was so refreshing - who knew?
(()) Cheers from Claire - avoiding the fires in LA
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Liz,
brought this to my attention (thank you!!)
https://clinicaltrials.gov/ct2/show/NCT02627274
The drug being
https://www.cancer.gov/publications/dictionaries/c...
And of course first hot off the English press 😉
http://www.dailymail.co.uk/health/article-5165757/...
Looks very promising - quite clever if tolerated - Phase 1 trial for now but La Roche - I am hopeful.
I have posted it on the Liver thread as Daywalker brought it up - but not sure the Mods will not ask me to delete it - so here it is - neat thought indeed - hoping it does what it was enginered to do.
(())
😊🌷
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Lola,
Please stay with us - but also use the search engine - I think there is a ribociclib thread too, should you end on that CDK4/6 inhibitor
😊🌷🐣
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Thank you Wildspaces. I found a Canadian thread in this forum but it seems not very active at the moment. I will search the other threads thank you for the suggestion.
I will gladly stay :-)
I am bit torn choosing Ibrance or Ribociclib. I know that should this recurrence just be in the chest bone the breast surgeon mentioned aggressive treatment. Tomorrow I see the MO to discuss the trial and options. My bone scan isn't until Dec 21 along with the ultrasound. it will be hard to wait until the results are in....with the holidays.... time for baking?!?!?!
Lola
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We’re all holding our collective breath for you Lola, waiting for scans and results, hopefully with good news.
Liz, saw on the news that you had a snow day! How often does that happen?
Took today off work but back tomorrow. Not precisely a quiet day, too many errands to run, but it was nice to do things at my own pace. As much as I hate to give in to this, I do think I need to cut my hours in the new year. I really do thrive in the work environment but it is becoming a bit of a slog. I find that I am no longer quite so enthusiastic to face the day. Perhaps a sign that I need to reassess.
Hope you are all well and the week ahead is kind to you.
Pat.
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Thank you Pat.
Today will be a busy day. I am going to work for half a day, then to my CT scan appointment and then to write my exam (For which i haven't study at all).
I met with the MO yesterday and decided to be part of the Ribociclib trial. She has book my bone scan for tomorrow. I had to cancel my other appointment and my u/s. I got a copy of my MRI and it is listed as birad 4, which I thought to ask the clinical trial if it is a recurrence and she said that if it weren't I wouldn't be asked to join the trial.
The MRI report says that there is evidence if abnormal 2.6 cm focal region of enhancement in the chest wall with extension to the pleural surface and posterior-lateral aspect of sternum. in addition on my right breast interior quadrant there us 1.0cm of focal non-mass enhancement with more conspicuity than the August 2017 MRI. That's why the u/s and mammogram was requested. I can't help but think that this may be dcis and that my breast are on a mission to "kill me lol.
on Dec. 29 I have the biopsy of the pleural lining. Liz - I believe you had a similar biopsy. how was the recovery? We are supposed to go to a new years party on Dec. 31st and I am wondering if it will be doable. I know that each our bodies recover differently but I would like to have an idea of what to expect.
I feel like I need a personal assistant to manage all of these appointments for me hahahha
Wish me luck!! All I need to pass this exam is 60%!!!
Hope you all have a lovely day.
Lola
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Lola - when I had a left pleural effusion with a lone lung met, my sternum became sclerotic (no uptake) and the lung met was killed after 12 rounds of Ibrance (palbociclib) plus fulvestrant (faslodex), along with Arimidex (AI). Is your trial pairing ribo with an AI or faslodex? It can really help! We all need personal assistants now. lol Good luck on your test- what are you studying? Did you discuss possible rads to sternum if ribo doesn't do the trick? These 4/6 CDK meds often take 5-6 mos or so to kick in, so be patient. My biggest SE was fatigue and hair loss. Liz - how are you doing today? I will be seeing you in London before you know it.
Ioana - had a glass of pink champagne to celebrate a friend's birthday last night - cheers to you for all your meds help. Pat - if cooking up my microliver met is on the table, then BC is just a few hour flight for me. I'll walk Sadie and you can pet Mr Tiny who is now medium large with all his teeth. Vampire cat. lol Div - saying hi! Cheers to all our brave ladies!(()) Claire headed for the big chair
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Ha... suggesting Sadie and Mr. Tiny would not be a good combo! Sadie thinks cats are for chasing.
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Hi everyone,
Been a bit quiet as I wait for news on whether or not I am going forward for the CORE trial. Complete admin malfunction and as a result my case is being re-referred on Mon. As many of us know- we need to chase things! It has caused me stress but at least now things are moving!
Lola- welcome! I see you have had some great advice on this thread already. These ladies are the best. I was dx with soft tissue met in the upper chest with mediastinum invasion, so no pleural involvement. However I did have a biopsy and was dreading it but it was actually fine. I am the world’s biggest wimp too. The local injection is uncomfortable but I tolerated the whole thing and just took it easy for the rest of the day.
Pat- snow in the UK is a hilarious spectacle. You would think that there has never been snow before! The whole country goes into meltdown and it is always big news. It lasted 2 days and was about 20cm deep but we have had severe spells in previous winters. Funny really!
I am pleased that you are taking a work breather Pat. You and I need to do do more often and Ioana come to think of it! I finish work on Friday. Today I put on a DVD of ‘A Christmas Carol’ and the class enjoyed it. Dickens at Christmas- fab! I also tidied up my classroom. The stand in teacher leaves on Fri and I’m glad really! She has not always made my phased return easy.
Claire- before we know it we will be sipping a cocktail/ fine wine at The Mayfair! Can’t wait my friend!
Di - hello to you. I wonder how your pain is and hope for a peaceful Christmas for you.
Ioana- thanks for spreading the news on the new drug being trialed in a Manchester. Hopeful things happening. You continue to help me put my crazy life into some kind of order and thanks to you for helping me prioritise. You would be shocked to hear of the catalogue of errors that has been my radiotherapy trial experience.
Will update you all on Mon 18th hopefully. I am going to York for some Christmas shopping and an afternoon tea at Betty’s. Hope it snows!! ☃️❄️☃️❄️☃️❄️☃️❄️⛄️❄️⛄️❄️⛄️❄️⛄️❄️⛄️
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hi all wishing you all a very healthy cheerful chrismas and that we all continue to be stable.Liz York christmas shopping ..so magical for this aussie history buff it was the 3D postcard come to life! Enjoy the bubbles
Smal budda niche in Temple at the ancient Burmese capital of Bagan
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Thank you Liz - you are wise and generous.
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Had HP tx in York yesterday. All went smoothly and for once I finished early, leaving the hospital at 1pm.
At the train station in York I was a little preoccupied with my thoughts having met with Dr Proctor at 9am. I was also carrying a bunch of flowers for the cover teacher, Tracey who is leaving my school on Friday. So my mind wasn’t fully on train travel... as a result I managed to jump on a direct train to London instead of my usual train which stops off in Doncaster!!!! So I went to London and back carrying this huge bunch of flowers.
I blame it on the drugs people...
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Liz - that's a beautiful bouquet of flowers even though. yes it' the drugs fault!!!! we have all done stuff like that.
Claire - The exam was on project management as part of my MBA. The exam was 3 hours long but I finished in 1 1/2 hours. I have one more on Monday and I am done done. I will be on Letrozole and Gosserelin while on Ribociclib.
Thanks for sharing your experience with the biopsy. Still not sure if it will be of the chest wall or the pleural lining. The BS secretary didn't say exactly of what it is. I could always the hospital and inquire.
Had my bone scan yesterday and asked the technician to show me my skeleton and there it was waiting with a beautiful smile and I saw my torso rotate in 3-D like in the movies. I am very curious and weird like that.
I am so behind with Xmas shopping that I am hoping to catch up next week.
Hope you all have a great day.
Lola
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Lola, I’ll be interested to learn what they biopsy. It’s been an issue for me with my ongoing challenges of finding a treatment that will work. I don’t have any solid tumors - it’s in my pleural lining of my right lung and my peritonium. When I asked about a biopsy my MO said it’s very difficult to get a good biopsy from the pleura.
Too funny Liz. Thankfully I don’t take the train as I spend much of my time preoccupied these days.
Almost the weekend thank goodness. And with any luck, the plasterers will be finished by Monday. I can take down the plastic for Christmas! 🙏
Hugs. Pat.
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Hi allSpent the first day of the holidays in a chilly, but beautiful and festive York.
Now wrapped up warm at home watching Home alone 2.
Walked about 6.5 miles today. Lovely lunch in a little out of the way restaurant serving a mixture of French and British food. Warmed up with carrot and parsnip soup, sea bass for main course and finished with creme brûlée.
Lovely day. Hi to you all.
L x
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Liz, York looks absolutely lovely. Wish I could beam myself over for a stroll and a bit of shopping.
Busy days here as there is quite a bit going on. The plasterers are still in my house. Argh! I finally had to put my foot down and they are to be done by tomorrow. The down side is that there is a thick layer of drywall dust blanketing most of my furniture and woodwork. Guess I know what I will be doing on the weekend!
Work has also been busy as I try to wrap up some loose ends before Christmas including getting through a huge stack of resumes of candidates for a manager position to support me - part of my strategy to provide myself some space in the new year. I am not taking any time off over Christmas but am looking forward to some quiet days to clean out email and paperwork.
Finally, it's cancer agency week. Met with my MO today. He was happy that I have gained a bit of weight. Who knew this would become a positive. LOL. We're sticking with Xeloda for one more round and then CT in January. He seems to be leaning towards a switch back to hormone therapy at that point, possibly Faslodex, A/A or a combination with Ibrance (would likely require a dose reduction as my blood did not behave well on it). I have actually been thinking the same thing so it was reassuring to hear this. It's questionable if Xeloda is having the desired effect (mixed signals - peritonium seems to have improved but pleural mets appear to be worsening and at best we are getting stable when I think both of us would like to see some regression) and the side effects are less than ideal. He didn't even ask about SEs from Madame X which makes me think he is planning a switch regardless. I do know that HFS is rearing it's ugly head - I'm keeping itunder control so far but am definitely experiencing dryness and sore fingers, toes and heels.
Oh and TMs are up although that is also a bit hard to gauge in terms of significance. We weren't following it closely. In late June the CA 15-3 was 33, above normal (I cheated on a blood requisition to get this baseline). Yesterday it was 45. Not really surprising as we know I had progression but the question is, did it go higher and then come down as a result of the Xeloda or is it continuing to move upward? I'm going to start insisting that this become part of my regular blood work given the difficulty in figuring out what's going on.
Sorry for the long winded post. I really need to update more but things seem to happen in waves. Hope you are all settling in for a joyous and restful holiday season.
Hugs. Pat
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Pat - I'm home from the big chair today and not sleeping due to steroids. lol on Decadron. I would assume that X has not worked for you, sounds like oncs idea is to give it another round, test and switch. My onc says scans tell the better story, but TMs indicate a trend. Frankly X is not the best at lung issues. A/A or Faslodex are good choices and neither cause HSF. I'm a fan of faslodex (which paired with Ibrance) got me 18 rounds. A/A did not help me, but it may help you. Rooting for all!
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Pat,
If I could beam over to you I would be dusting, making coffee and generally acting as your assistant! Couldn’t guarantee that we would get too much done though!
Claire,
Love the t shirt and you appear to be holding up well. The minefield of drug options and combinations is mind boggling.
Since Monday’s trip to York I have had yet another bout of general illness which I have to put down to low immunity. Sore throat has now gone onto my chest and I haven’t slept much. At least I’m off work and have bought and wrapped all my Christmas presents.
It seems likely that I won’t hear about the trial this side of the holidays; one last phone call attempt today. Dr Proctor said that if I do enrol on CORE, all my treatment would have to move to Sheffield- yuk... the other route is private treatment at The Christie, Manchester. All still conjecture at this stage as it has always been a tiger country issue.
Love to all,
Liz x
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Pat- could luck with finding some good help to assist you. Hope that the new approach that the MO is thinking about would work.
Claire - Love the shirt!
Liz - it' great that you have some time off and are done with the Xmas gift wrapping.
I met with my MO today. Bone scan was clear other than the sternum area and the CT scan showed the same. I am beginning to wonder what's going on in my right breast and I am confused on the lanhuage. The bone scan said that there is a focal of non mass enhancement in the right breast with enlarged left internal mammary lymph node compatible with metastasis. why would a breast enhancement show up in the bone scan? Microcalcification?
The CT scan says there prominent soft tissue at the level of level of the anterior superior mediastinum abutting the inner wall of the sternum.
I read the reports after I saw the MO so I couldn't ask questions on the report. So my questions (which may be silly) are that is it in my intra mammary node and in the sternum, does this mean stage IV? also does no definite indication of metastasis mean there is no metastasis or there is nothing that can be diagnosed? Sorry but I feel like a newbie again lol
I don't see my RO till Jan. 10 and I feel like she is better at explaining most of these findings and takes the time. The MO felt too rushed today.
I got my first shot of the Gosserelin/Zoladex today. It was was a bit uncomfortable but I survived lol
Other than that I got all my Xmas shopping now I just need to wrap them tomorrow.
Hugs
Lola
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