Shadow in chest is recurrence
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Z's post on hyperthermia referred to her initial tumour - I think the thread was whether at Stage 4 the primary breast tumour should be removed or not - there are no easy answers to that.
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Liz, just a note to send some support. Did you get something for the anxiety yet?
I hope you will know soon what treatment approach is suggested. The not knowing is dreadful - on top of all you've already been through. I do know that the combination of letrozole and Ibrance has been extraordinarily effective but I also know that there are just about as many approaches as there are cases (well, that's a slight exaggeration...). What's important to keep in mind is that there are numerous approaches, so don't feel that you have to accept whatever's offered unless you understand the benefits as well as the risks to your full satisfaction. I think bc patients in the US tend to be a bit more assertive than those in the UK and Canada and that has been to our benefit. Perhaps that's one thing others can consider adopting from us. It's hard work, though, being your own advocate all.the.time.
I hope you'll have lots of family time over the weekend, Liz. Take very, very good care of yourself.
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Hi Hopeful
Sincere thanks for continuing to check in on me. Here is an update: as each day passes I am having fewer crying episodes but still having moments when I feel despair. I was explaining to Richard that it feels like I am excluded from normal life. "Losing" my ability to be in my job has been devastating. Last time I was advised to stay at home whilst on chemo due to infection risk.
About chemo: my biopsy was inconclusive for Her2 but docs so far have presumed that it is her 2, same as last time. Surely this is a dangerous assumption to make. For example there are trials for Ibrancre here in UK but I'm pretty sure you have to be Her 2 negative? Ibrance not available here due to huge cost and our Nhs won't justify it,
Secondly, is it wise to jump onto chemo straight away. Is it usually the plan for Her 2 mets patients as chemo works alongside targeted therapies?
I worry about first line treatment being the big guns.
Timing: wed appointment with onco and decisions to be made. Next week I should get my second opinion too. I'm reading up but it's overwhelming. Looking into clinical trials too.
Menopause status: I will need to be post men. How soon can I expect that? Will injections work to shut down ovaries? What can I take for hot flashes?
Anxiety: took one 5mg diazepam but it knocked me out. I can't risk feeling like that when I need a clear head.
Trying to be own advocate and will push them for many questions; not least whether surgery is possible? I cannot get a definite answer on this one. Some say it's wise to remove tumour burden, others say it risks further spread and anyway I think it's behind a bone in my chest so therefore not operable.
As you can see all this is contributing to my already screwed up state of mind.?i am hopeful for multiple, cancer zapping options but feel out of my depth in knowing which route to take.
Liz
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Hello Liz,
You could try taking only half of the diazepam 2.5mg ( it is an older benzodiazepine) especially at night if you need to sleep to function the next day.
Some people prescribe LORAZEPAM - it comes in 05mg, 1mg ...it might not make you as drowsy.
You are doing a LOT of ground work, at a time I think I would just curl up in a ball and ...
Out of all of it - hopefully when something feels right for you, you will be able to recognise it.
Most of what I do is about number patterns but I am a strong believer that patients ( us:) know instinctively what is best for them.
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jackboo, do you know the hormone status? I would look into maybe letrozole, I think you can take that to become post meno. Also I have heard her2 positive or even borderline positive that herceptin may be effective. Good luck hopefully you can get rid of it and move on soon.
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Curl up...not quite what I meant
ok - I did tell you about English and me/I ???
your eternal pupil...
stay with us:)
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Hi ladies
meow- it is ER positive. I think I'm right in assuming that the first line of treatment for Her 2 mets is always chemo. Some promising results with Perjeta apparently.
Ioana, good idea about the diazepam. I'm holding onto reading many stories of her2 mets ladies who are many years out. My daughter needs me!
Sorry there have been issues with your rads treatment. You will be keen to get done with this treatment I'm sure. Thanks for keeping in touch regularly. I feel your support and value your knowledge.
Liz
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Hi Liz,
Just a few more days and you will know more. I know it's very hard but try not to let yourself get too wound up. You are doing the right thing to arm yourself with information but it can be overwhelming as well. There are so many treatment options and so many variables. My background is science so I tend to delve into the biology behind the treatments but there is no way for us to become experts overnight. As the other ladies have indicated, you will ultimately know what is going to work for you.
Also, try to keep in mind that you have time to make decisions about your treatment. I know with the panic of a stage IV diagnosis we want the cancer under control instantly but BC is generally slower growing. Who knows how long the cells have been growing in my pleural lining? I suggested to my MO that this had been percolating for awhile and he agreed. It was only once symptoms presented themselves that we knew what was going on.
There are a lot of treatment options and, as you note, many women, both HER positive and negative doing well with mets. Deep breaths. The suggestion for a reduced dose of the diazepam is a good one.
Sending you positive thoughts from Canada. Take care. Pat
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Remember there are many. many chemotherapy schedules available before you can "exhaust" them all. More therapies are coming up all the time....a big one getting onto the market next year (or earlier) which stimulates your immune system big time. It is very painful to receive bad news like you have and as others have.....we all are afraid of this happening. That diazepam is WAY too strong for you.....I took 1mg ativan daily when I had post mastectomy pain syndrome...for 8 months....the doctor nearly fell on the floor especially about it being addictive so went off the next day...nothing happened. But 5mg of diazepam would knock me out as well. Some of these medications are considered more addictive than others...for example..xanax is pretty bad while oxepam not so much..depends a lot on how long they stay in your bloodstream....so maybe re-adjust the amount. Er+ is good news as the antihormonals will be a good friend to you as well...and there are several of them. In total agreement with sadiesservant. (((((HUGS))))
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Hi Pat
So good to hear from you. I am doing a little better. Feeling fatigue and headaches which is also due to the blood thinners. I have just 3 days left on the high dose and am hoping to feel better when I'm onto the lighter dose.
My lovely girl is cooking dinner and we are watching the rugby. England getting hammered by Ireland unfortunately! 😆
All my info has been forwarded to The Christie clinic. So this week I should have 2 opinions. I am taking it hour by hour and enjoying the closeness of my family. Next week I will be on my own more which I find challenging. I should be tackling chores but don't have any motivation.
Oh and I have a lovely US to take a second look at my womb lining. Full bladder time. 😝
I get what you are saying about the cancer percolating. I know you were wanting to pin your doc down on the likely turn of events for you. I can't bring myself to ask those kind of questions. There are some things I just don't want to know.
Thanks again Pat for being so kind as to think of me.
Liz
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Definitely try a reduced dose of diazepam, or ask for Ativan (lorazepam), which doesn't seem to be as strong. I used .25 mg. - .5 mg. when going through the worst of things and was grateful to have it. At that level, too, it's unlikely to cause issues with dependence. Ativan is very easy to cut into smaller doses if you have a pill cutter or a sharp paring knife.
Hang in there. Do something you enjoy this weekend, if you feel up to it. Maybe a silly movie with the family?
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Hi blue pearl
Thanks for your encouragement. I am hoping that the oncologists ( both) present a positive attitude as I am dreading walking in meeting with negativity. I do hope not- I need them to reiterate the good vibes I'm getting on this forum ie that tgeres lots to try and we have options. I hope so badly for an optimistic onco who isn't going to terrify me all over again!
Helpful comments on the diazepam- why on earth have I been given that dose? Maybe for use at night to help sleep but I'm a zombie during day. I've only taken one so far which is a miracle to say how I feel. I must look into another option.
Best wishes
Liz
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Hopeful, hello!
I'm hanging on but I'm sure this is down to you guys. Literally holding my hand across the miles. ❤️
A movie sounds good- rubbish weather here but we Brits are used to that!
Having some scan anxiety over an US on Monday and I have to have an MRI. Could do with some coping strategies for scans if anyone can chime in.
L x
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Jackboo09 - if your diagnosis is an isolated internal mammary node with no other spread - there is no immediate reason why this is inevitably stage 4. Why is it not a locoreginal recurrence? There ARE options, I had two internal mammary nodes removed during Diep surgery both of which were found to have cancer. I had already had chemo and rads a year before. First - note, mine WERE surgically removed - it IS possible in some cases. Second, you're in the UK like me, which means you almost certainly did NOT have rads to the IM nodes first time - that's only just started to be protocol in the UK this year, and only in certain hospitals in certain cases. But it IS possible, definitely. I'm at possibly the UK's top cancer hospital but I had to get a second opinion from MD Anderson in the US about how to do the rads - they have published a lot over there about IM nodes. It requires state of the art radiation facilities but they are findable here in the UK. My hospital did it for me with the advice of MD Anderson. There is also work being done on Proton therapy to target nodes in this area - though maybe not in the UK. But Cyber knife has been trialed in the UK. I researched the hell out of this, There's been very little research interest in IM nodes in the UK but there is elsewhere. I read everything, and pushed for aggressive treatments - and there is hope. After surgery and rads I am now 9 months NED as per my last PET. My Onc has another patient with IM mode recurrence also doing OK NED a year or so ahead of me. I am considered very high risk - but I'm not yet stage 4. I also had an oopherectomy and went onto letrozole - but no chemo. I was also ER+ and borderline Her2 on the initial cancer. If you want to PM me or speak to me I'm happy to share my research. I should say that of course all our circumstances are different and there may be aspects of your case that make your options and outlook different from mine. I'm not a medic. But happy to share what I know about IM node recurrence if it helps at all. All best.
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Hello Liz,
Well this thread is moving along...good!!
SSInUk brings up great points.
May I ask SSinUK - were your nodes positive prior to the reconstruction and removed during the Diep or was it de novo finding at the surgery ?
I will share with you what I have picked up from various posts on this fantastic community)
Internal mammary nodes can be irradiated - they do it at the Brisbane facility I go to.
Not simple or liked by technicians but most machines that offer stereotactic radiotherapy should be able to do that. Ok I picked that up by chatting the great tech that keeps zapping me.
Most women who have lumpectomies get radiation to breast and axilla, not chest wall, internal mammary nodes or supraclavicular nodes. There is always some concern about irradiating an area twice but since it is not strictly speaking the same area - my thoughts are that it should be on the table.
There are two things that keep nagging at me:
1. Internal jugular vein thrombosis are not that common by themselves or as presentation to cancer recurrence - worth asking the onc how many has he seen - yes I know the thought is the it was the cancer burden (why they probably said you have disease but the scans did not pick it - reality they do not know for sure) plus Tamoxifen - still it's a 2.9 cm lesion with a clear CT - we don't know your tumour markers but it does NOT strike me as the "huge" burden of disease ( all relative of course) - there are OTHER causes why you could have been pro thrombotic. Why is that worth knowing ? Because if it is not the cancer burden - 2.9cm is all there is.
2. What is it? Soft tissue recurrence - fat, muscle, skin, fascia are possible but quite rare by blood/lymph spread. Usually they are loco regional - local spread for a few crazy cells left behind from original tumour. So we are back to lymph nodes....
I am going to go out on a limb and say I think/hope you will be fine with your pelvis ultrasound - it's about time you caught a break.
No advise for scans - I hate them - the whole thing no exceptions - I take some good music with me and try and pretend it's not me - but DETEST them.
Hugs
Ioana
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Hi Ioana
Yes definitely food for thought. You raise important questions that I believe they may not be able to answer from this poor biopsy. It leads me to wonder whether another will be requested, not keen on this idea.
Nobody has been able to tell me what kind of spread this is. The radiologist who did the biopsy called it " this extra bit of soft tissue". No node cell was found. Based on this then I am stage 4 and" if it is removed will go else where" in consultants words?
Thrombosis: she puts this down to mass and said. " there must be enough cancerous cells to have caused this" ... Tamoxifen wouldn't cause this." Conversely, a doctor on the haematology ward directly blamed clot on Tamoxifen as the thickened womb lining was a further indicator.
Rads: in 2011 I had 15 treatments over 3 weeks at Weston Park, Sheffield. They actually scaled down the rads plan as it was originally for longer. My breast was zapped but not axilla; a friend of mine did have axilla rads and we were both node positive.
Current consultant wasn't hopeful about more rads and mentioned that it could cause this other radiation related cancer. Personally, I can't wait to talk to somebody else. This woman is the breast consultant and surgeon; she is not an oncologist and certainly won't have access to even what we have managed to find. Ss in UK has put a great deal of time into researching the field of IMN metastatic disease.
My gut is telling me that surgery and rads, followed by anti hormonals is the best plan of attack, although I would not be averse, and may well need monoclonal targeted therapy.
My plan now is to speak to SS and get the details which will allow this third opinion and get all my data sent off to this hospital and MD Anderson.
Emotionally this is tough but even if all this leads to nothing, I am beginning to think that my case is reasonably hopeful. Why hasn't the BC consultant more positive about this single mass?
Stereoststic rad treatment ( not sure if correct spelling) is available in parts of UK,
Will keep posting
Liz x
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I wouldn't stop until you get better answers maybe MD Anderson will have people that might know what is happening. But they were able to biopsy and confirm cancer? You said hormone positive.
It does not sound like a typical recurrence, I hope they find a good solution.
Best of luck to you.
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Meow,
Yes it is cancer and hormone positive. I think you're right about pushing for answers. At least then I'll know I did everything possible.
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hello Liz,
Have a good Sunday with your family:)
I will PM you after your ultrasound and before Wed - you are having an incredible crash course into this world - and you are holding up your end like no other!!
We are all here for you.
Ioana
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Hi Ioana
Thank you/ it is really helping me to share all this with you and other amazing ladies in this forum. Going to try and have a normal Sunday as far as possible.
My type of BC is not commonly found in womb and I have had no symptoms eg abdominal pain or irregular bleeding. Now off tamoxifen for nearly a month so hoping for a normal result.
Have a lovely day.
Liz x
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Liz, I don't recall - have you had US and MRI before or are these your first?0
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Hopeful, so far I have had a chest/ abdom/pelvic CT scan. I will have an MRI and this US tomorrow is for the slightly thickened womb lining.
L x
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Wild places my positive nodes were an incidental finding, they had not been seen on scans.
Liz I will speak to you when my kid is in bed. Meamtime, for anyone who is looking at this thread facing similar issues here are two articles. The first is an Onc's view, discussing an aggressive treatment approach:
http://www.breastcancertakingcontrol.com.au/uncate...
The second is a study on IM node recurrence. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC29415...
Among some not terribly pretty statistics you will see that isolated IM node recurrence has a survival rate of over 40%. This is old data in a retrospective report 7 years ago and many will not have had the benefit of latest radiotherapy treatments etc. Others report better outcomes. But the point is, nearly half these women were ok. It's scary odds - but it's not certain doom.
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Hi SS
Looking forward to speaking to you and sharing ideas on treatment. I had come across the article on IMN recurrence and was quite scared by the stats but as you say it is quite an old study and there are new anti hormonals in use now as well as multiple targeted therapies for Her2. I'm hoping to beat these stats and have gained hope from many women on this forum who appear to have passed the 5 year mark on from dx of Stage 4.
Isn't all this just so totally crap. I want it all to go away.
I'm thank you again for your input.
Liz
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Thank you SSinUK - that was my first impression and perhaps why they were taken out for tissue biopsy.
My understanding is that IM nodes can certainly be removed surgically but the benefit is hard to assess - each case needs to be decided on merits and there are pros and cons aplenty.
The survival stats may take into account age (few studies will plonk in all major comorbidities - diabetes/obesity being a big one - they will match the groups in the initial analysis but I have not seen stratified results - maybe too confronting to publish) but do NOT consider:
- fitness level - and we know that exercise is a huge cancer deterrent some studies finding daily 30 minutes equivalent to Tamoxifen use ( can quote if interested)
- social support (crucial in stress reduction and related to glucocorticoid levels and insulin and sugar and .....) and let's not be around the bush - access to appropriate medical care
- exactly how hormone positive is the tumour (this is usually a percentage)
- not to mention they are usually reporting on the past 10 years and not the next 10 in an area that is shifting medically - not fast enough but some big money being put into research sadly because of the shear number of women with this disease
If you are talking numbers - take the 40% as conservative but KNOW you can better that.
And I am not optimist - I know for example that recurrence at stage 2b approaches 30% - there are multiple reasons for that - and that if you are high risk in that stage 2b you are on the top end of that 30%.
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A day spent sorting out referrals to clinics. Went for a walk but now feel shattered.
Still have an US to get through this evening. My daughter has just returned from school and I can tell she is a bit disappointed that I'm tired/different/ preoccupied.
This is a hard, hard road....
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It is a hard, hard road, Liz, made harder by the lack of reliable information, the long waits for results and consults, the need to do so much of it yourself. I do hope that you'll end up with a very supportive and encouraging oncologist; that would go a long way to easing your way.
I can't say much about the US but do hope that goes quickly, smoothly and reassuringly. I would think you'd have results on the spot but that may not be the protocol there in the UK.
As to MRIs, some suggest taking a bit of an Ativan or the like. I wouldn't do this if you have to drive, of course. To me the various noises, odd rhythms and abrupt silences are reminiscent of John Cage's compositions so I distract myself by trying to hear the composition, the musical intent if you will, in the noise (while knowing there's nothing of the sort behind it). Others find meditating helpful. Mostly, it's just boring - and a bit challenging knowing that you have to ignore any itch that pops up!
Good luck with both of them, Liz. Hugs from afar.
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Hi hopeful
I'm fairly sure I have had a good result for US. The womb lining was same as a month ago at 11 mm. Above 14 is the number for concern but I will get the official feedback soon. Lovely lady who conducted it.
The only other area now is this mild concentric thickening of upper GI that could be hiatus hernia. I do have some indigestion and yes sorry gas issues which I put down to just mild IBS. No difficulty swallowing or nausea. They can't biopsy this area and haven't ordered an endoscopy. The rationale appears that if it is cancer there, chemo will shrink it. Mets here is very rare apparently and more common with lobular. This is the last shred of worry from the CT scan. I did have quite a stressful job too. Always something to worry about. Didn't notice it after lunch today but did tonight. It could be that I had drunk 1.5 pints of water for the scan followed by rice and bolonase.
You can probably tell that my state of mind is shot.. I am taking half a diazepam at bedtime now to help me sleep,
Referrals to Manchester and London are in place. My own onco meeting is Wed. Facing the treatment again is much harder this time round. Trying to summon my inner strength!
Liz
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jackboo, will they be able to monitor if the chemo is shrinking the mass. I wonder if they will recommend herceptin or hormone therapy. I am leery of tamoxifen because one of my sister in laws got GYN cancer from it. I think AI drugs are more effective and don't have the cancer risk. I hope they can zap it, finding the right drugs to make it go away.
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the thickened womb lining could be Tamoxifen.
The MRI might clarify the upper GI. I dont think I can take much more worry.
Let's hope it is a hiatus hernia.
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