Caleda4

Hi Claire, If your lymph nodes are stable,that sounds good. I have one lymph node close to aorta,another one of 8mm and some very small ones, which I have been told is metastatic. I have no side effects so far and feel very fit. However my Oncologist was keen to zap the lymph nodes quickly so I started with carbo chemoon 4 April. My next chemo is next week on the 3 May, which will be carbo/caelyx. I had to wait for Cardiologist to give the ok on my mitral heart valve which leaks,but fortunately after tests that has shown no alteration in 20 years which is great, Tomorrow I will have a blood test so it will be interesting to see what my CA125 is,as before chemo it was 157. I was on Rubraca for 15 months but CA125 just kept rising.

I hope that you get a good result from the surgery on May 10th. Do let us know how you get on. x

Barmycharm in reply to Caleda4

Hi CaledaThanks for your reply. Im confused because first they told me it was recurrence but my oncologist didnt want to give chemo at that point because I was well and the lymph sizes were about 8mm. They have since grown to around 12mm and then stopped. My Ca 125 is never an indicator. So I guess the only way to know for sure is to have this biopsy.

I hope your Ca 125 has come down a little when you get your results and best wishes for the rest of your treatment, I hope you are finding it manageable

Claire xx

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Lyndy

Hi Claire You may know my experience..which was that my enlarged thoracic lymph nodes stayed silent for more than 2 years before I became symptomatic. I went down the watch and wait path.

It’s your decision but doing nothing is a real option, so don’t feel you have to have this procedure unless you actively want to x

Barmycharm in reply to Lyndy

Hi LyndyYes I remember your situation, very similar. It’s strange that nobody else in similar situations have had their oncologist suggest this VATS procedure as an alternative to either waiting or starting chemo straight away 🤔

My family aren’t keen on watching and waiting I think they would rather I am proactive with it so I’m feeling some pressure there although they will obviously support my decision

Best wishes to you Lyndy

Claire xx

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Lovedogs41

Hello

If it was me I would go with my gut feeling.

Stable is great,personally I would watch and wait.

But it must be your decision,don’t be pressured into a procedure you’re not 100% confident about.

Wishing you all the best with your decision x

Barmycharm in reply to Lovedogs41

Thank you xx

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Realistic

Dear Claire your doing all the right things, your asking all the right questions just hope they get you sorted quickly its best to get it checked outand get it dealt with. Don't believe in ignoring things get them sorted if that's what the experts

Say. Good luck sending love & hugs xxx

Barmycharm in reply to Realistic

Hi thank you for your reply. That’s the feeling of my family, they think better to know than not know.

Its a tricky one xx

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SUE7777

Hi Claire, I would definitely get a 2nd opinion although with the time scale that would be a bit tight. I assume as Bart's has been involved you live in London so you could see Professor Christina Fotopoulou at Imperial College she has a fantastic reputation. All the best Sue xx

Barmycharm in reply to SUE7777

Hi SueMy daughter did actually contact Professor Fotopoulou in fact she spoke to her directly which we couldn’t believe and she said she’d take me on. However when her clinic requested my notes from my oncologist it all became a bit complicated in that they said I have to go through my GP to request the second opinion before they will release my information. So you can imagine how long that would take.

My oncologist then spoke to me about my requesting a 2nd opinion and offered me this alternative. It’s all very confusing xx

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bamboo89 in reply to Barmycharm

So, do you mean your oncologist only offered this VATS procedure after he/she knew you'd tried to seek a second opinion? Could it be they've offered this because they think you are anxious about the nodes and want something done with them rather than them believing its an essential procedure? Are they merely anxious to avoid your going elsewhere for an opinion/treatment in case its because you don't feel they're good enough? It just seems to me, if the nodes are currently stable, is it really critical to have this procedure right now (or even at all, given the risks you mention) or can it wait?

I'm maybe being a bit suspicious here, but to be honest, I'd contact my GP as a matter of urgency to find out if its true you need them to refer you on for a second opinion or not first off, just to make sure you've been given accurate information. My belief is that you have a right to access any and all of your medical information and records when you want to, so although they may not want to send it all on to another doctor, they are obliged to give you the information, which you then can present to another doctor even as a private (paid for) consultation; I've certainly done that myself, taken along copies of scans and reports and so on and paid for a consultation just to see what they'd recommend, but check with your GP.

Otherwise, follow your own gut instinct - naturally, family always wants us to have every bit of treatment offered, but you need to make that decision either way for yourself....

Miriam

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Barmycharm in reply to bamboo89

Hi Miriam yes that’s correct she did offer it after we’d requested second opinion but also because at Xmas after the Pet scan results which showed increase in velocity which would denote it is definitely cancer she had discussed starting chemo which I deferred. Then because the next ct scan showed no growth in size it threw everything up in the air again. So I think her suggestion of VATS is genuine as it’s the only way to ensure what’s what. I spoke with the Thoracic surgeon who will be doing this procedure and asked him if he fully advised it to be done and he said yes definitely because this has been showing for a year and we need to know what we are dealing with so that you can be treated sooner if you need it. So that makes sense obviously. I just would like to find someone who has either had this done or even heard of it so that I could get an idea of it. You know how we all help each other with our personal experiences of our varying ops, it just helps to know someone who has been there doesn’t it.The reason that they would not pass the notes over though is a matter of funding! Because it was going to be done via NHS and in that case you have to request your GP to request the referral.

My head is literally spinning. Sorry I’m probably going on a bit xx

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bamboo89 in reply to Barmycharm

Yes, I know exactly what you mean about finding others who've had similar treatments, and no, you're not 'going on a bit' so no need to apologise!

Okay, so they know they're cancerous nodes because of the PET scan; they also know they looked like they'd stopped growing from your last CT scan; so I am rather puzzled by the thoracic surgeon saying yes, you need this 'so we know what we are dealing with', because apparently, we already know what you're dealing with. I mean presumably, if they were larger on the next scan, you'd start chemo? And if you had the procedure, and they confirmed it was cancer, does that make any difference to when you start chemo, would it be sooner or later? Would they be offering something other than chemo, depending on what they find after biopsy? I'm looking at this as if its happening to me, and those would be my thoughts, and I'd need a bit more convincing that there was some point to having it done, some benefit to be gained, because as it stands, I'm not seeing one. There may, of course, be some other factor they've just not told you about, but I'd need more info, a deeper discussion.

Your situation reminds me of something that I experienced about ten years back - long story short, they thought I might have something called Sjogrens, an auto immune disorder, but nothing was showing in the bloods, so they wanted to cut some of my salivary gland out, a patch about half an inch square from inside my mouth and test that. But given they'd also told me there's absolutely no treatment available for Sjogrens anyway, I couldn't see the point of proving I'd got something that no one could do anything about, nor putting up with the pain and soreness for weeks on end, so I said no. All medical interventions carry risk, and unless there's a benefit to be gained, then the risk to benefit ratio means its probably not worth it, but you need all the information to make that assessment.

I often think the worst thing about having cancer is actually the decisions we have to think hard about and make when we'd rather be leading a 'normal' life, as well as the often ghastly procedures and treatments involved... good luck with it.

Miriam

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SUE7777 in reply to Barmycharm

Did you go to your GP and make the request? They might be better than you think. Good luck xx

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Dollie22

Hi Claire,I haven’t heard of VATS. It’s sounds really high tech . Great that your CT is stable - that must be a good sign . Just wondering if your CA125 has increased .Best of luck with the procedure . Hope it goes well,

D

Barmycharm in reply to Dollie22

Hi DollieNobody seems to have heard of it.

My CA125 has never been a marker, even at the height of my disease it with large tumour and stage 3 it never went above 47!

My oncologist said that I do not present as they would normally expect which is part of the problem and why they are not really sure what route to take. The drs have said that all the way through, trust me! Haha xx

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Dollie22 in reply to Barmycharm

That’s interesting re the CA125 ad it’s a very sensitive marker for me. Best of luck with the surgery . I really hope it is just something benign . Great to get the opportunity to have it removed . Let us know how it goes . Kind regards,

D

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delia2

Hi. I understand your dilemma and your he arguments on both sides. It does sound like high tech state of the art as a procedure. I would think a biopsy was worthwhile if they would do new genomic testing on it to guide future treatments. I would also probe a bit more about the dangers of the surgery. They obviously have to warn you of possible problems but what are the odds? I hope you can get a second opinion in time. Best of luck with your choice!

Barmycharm

Thanks everyone. It’s helped to get all your thoughts. I’ve decided that I will phone my oncologist secretary next week and ask if I can get a quick phone call with her to pose some of the questions that have been raised and discuss my angst regarding the procedure. Fingers crossed she’s got time to fit me in xx