DenzieModerator3 months ago

Do call you oncologists office and ask the nurse to get back with your doctor’s answer to your question. While you are waiting for the answer get a second opinion at an NCI affiliated cancer center nccn.org/home/member-instit...

Or from one of the Centers of Excellence that Go2 Foundation has qualified go2.org/treatments-and-side...

It is my experience that the facility where you get your second opinion will handle getting all the paperwork and copies of your CTs, MRIs m, etc.

kri312 in reply to Denzie3 months ago

Thank you...working on getting a name from MSKCC

Reply (0)Report

Feelingblessed20133 months ago

I am sorry you are going through all this. I was going to give the same advice as Denzie did, reach out to your doctors office to get answers, and get that second opinion if at all possible.

kri312 in reply to Feelingblessed20133 months ago

Working on this as we speak!

Reply (0)Report

JanetteR573 months ago

I understand your anxiety and concern but I read the report that the nodule or lymph node is unchanged since your last scan, granulomas are common in many people's lungs as are nodules - they are not necessarily cancer and many are like yours, watched (active surveillance) in the UK under BTS guidelines. It's saying the changes are what would be expected after things settle down after your lobectomy. The pleural effusion is worth asking about as these are usually treated in the UK by draining... but none of this suggests cancer or that you won't make 6 months although it's natural for our imaginations to run riot when we read these things.

roycastle.org/about-lung-ca...

It's a hazard of sending copies of clinical letters to patients that those who study thoracic or other images who've trained for many years are then contending with us looking on google or wikipedia and translating it into a very different interpretation. I remember having similar panic when a CT scan (prior to ulna nerve repositioning showed atelectasis - lung collapse and the hand surgeon asked me to contact my respiratory consultant to see if hand surgery could proceed only for my consultant to explain that I'd recently had a bronchoscopy and that's what happens and it would recover and yes, the surgery could proceed and did.

I read it that he's now decided for more active surveillance i.e. 6 months to see if things settle or worsen but if he's not worried, that is how many are treated in the UK now we're finding out how many thousands of people have nodules/nodes that inflame and increase and settle and very few (like moles on the outside of the skin) develop into anything sinister. 3.4mm and 2mm are likely considered too small to biopsy or do anything other than 'watch and wait'.

Given your cancer history, he's erring on the side of caution by bringing your next appointment forward..... I had a similar scary scenario in 2012 when I had symptoms (My lobectomy was in Dec 2010 and removed a 7cm tumour) and imaging revealed 'something' so the consultant did a bronchoscopy but found whatever he'd seen on the image and had him concerned was inflammation around the stump/scar of the surgical site so he reassured me it would settle down and I was given medication for the infection that had agitated it with my coughing etc. I've had several nasty chest infections - some of which hospitalised me since but thankfully no recurrence.

hope you can distract yourself in the meantime but call the clinical team with your questions when you get chance about the pleural effusion. good luck.

kri312 in reply to JanetteR573 months ago

Thank you for your calming response- this was the exact report wording - I do have a call out to him and am considering a second opinion. I really trust and like my doctor but the "watch and wait" is very challenging. When I first was diagnosed his response was, "I am not going to bother doing a biopsy - it needs to come out." He was very confident in his decision making based on the CT/PET scan at the time.

Impression

Postoperative changes status post right upper lobe wedge resection and right lower lobectomy. Subcentimeter nodular foci of right upper lobe ground-glass attenuation have been stable since 11/12/2021. Biopsy or close interval follow-up is recommended.

Lungs and pleura: There are stable postoperative changes status post right upper lobe wedge resection and right lower lobectomy. Nodular foci of ground-glass attenuation measuring 3-4 mm adjacent to postoperative changes in the right upper lobe (3: 87, 3:92, 3:100) are unchanged compared to 11/12/2021. There is a stable, 2 mm fissural nodule or intrapulmonary lymph node (3:99). Calcified granulomas again noted. There is pleural effusion.

Subcentimeter nodular foci of right upper lobe ground-glass attenuation have been stable since 11/12/2021.

Reply (0)Report

JanetteR573 months ago

Yes, I had exactly the same situation but it was more a case when I asked about a biopsy that the surgeon said 'we've found it last month and like to act quickly' so when I corrected him and told him 'no it was October when I went to A&E at. the district general hospital and it was found on the chest x-ray' that his face changed - as it was almost 2 months by that time but having the CT somewhere else, then the PET scan at another hospital and seeing him at his tertiary thoracic centre, he was only aware of the PET scan result but said it clearly showed a large mass that needed removing whatever it was and it would be sent away after surgery to determine what it was.

However back then there was no keyhole surgery, only targeted therapy for EGFR+ and my adenocarcinoma wasn't positive for that and the specific type I had I was told chemotherapy didn't work so my only follow on has been 'watchful waiting/active surveillance' and due to my fitness, I was quickly (probably too quickly) put onto an annual pathway. however when things have occured, they've been quick to pull me back into investigate with either scans or bronchoscopies... and have utmost faith in him.

Things have changed and now at 7cm I would have been offered chemotherapy - although I don't regret not having it - I've met so many who've had side and late effects that were never properly explained nor the very small benefit it might offer - only made clearer when the pandemic was on and they didn't want people exposed to covid in hospitals unnecessarily. There is talk of offering immunotherapy or targeted agents pre surgery which means biopsies are even more important and may change some treatments for symptoms such as steroids as these might impact eligibility for immunotherapy in future.

At the size yours are according to the image, I know from national LC advisory committees and clinical expert groups that they can only biopsy when they get to a certain size as 'hacking bits of peoples' lungs out' as one said can cause harm.... it's one of the major arguments internationally about whether to screen for lung cancer or not as so many people have the type of granulomas, inflamed nodes and lung nodules and very few will go onto develop into anything.... hope you get the reassurance you're seeking soon.

kri312 in reply to JanetteR573 months ago

Thoughts on pleural effusion out of nowhere? Him not being concerned?

Reply (1)Report

JanetteR57 in reply to kri3123 months ago

pleural effusion can sometimes happen as a result of infection like pneumonia not only cancer - when I was admitted onto a respiratory ward in oct 2010 (which turned out to be cancer) but misdiagnosed and mistreated as 'uncontrolled asthma' there was a lady in the bed next to me who had pleural effusion and was being treated with talc pleurodesis and said it was a regular occurrence for her....

It should still be investigated for treatment - I'm assuming his comment about not being concerned reflects his opinion about whether it's cancer and that as they're stable, they fit the pattern of management he's adopting... but sounds as if you're not reassured by his explanation - so do ask more questions of him or the nurse... good luck.

roycastle.org/about-lung-ca...

Reply (1)Report

kri312 in reply to JanetteR573 months ago

I spoke to the office and the radiologist made a mistake it should have read “no pleural effusion!” Report has been corrected.

Reply (2)Report

JanetteR57 in reply to kri3123 months ago

wow -I hope they apologised - would be useful for them to know how such a typo/error can plague somebody's mental health...... hopefully that reassures you a little more? I've had a similar incident this last week when I received a letter from the hospital from a phone appointment in August, letter dictated in September but only received in November from about 7 miles away - and states I have a problem with my right elbow/nerve entrapment - however it was my left elbow/ulna nerve on which I had surgery in 2015 and had issues since botched cannula in hospital stay in 2019 and as I'm left handed, it's affecting many issues. As I have an ultrasound scan booked for 19/11 I phoned the secretary last week and learned that yes, the right arm has been booked for the scan despite having nothing wrong with it! just shows how these 'serious untoward incidents' or 'never events' happen.... scary....

Reply (0)Report

kri312 in reply to JanetteR573 months ago

His physician assistant looked at the scan and said “you don’t have one “ it’s a typo- I will reach out to the radiologist! I told her I was close to the edge. The phone call was all I needed to reassure all was good. Crazy how this can happen to someone’s emotional health

Reply (1)Report

JanetteR57 in reply to kri3123 months ago

I think when they deal with it every day, they might become blasé about the terminology/situation but for every patient (and often their relatives as a result) it's a very scary situation.... hope you can now rest a little easier...

Reply (1)Report

kri312 in reply to JanetteR573 months ago

yes until the next scan! Thank you !

Reply (1)Report

StLScorp3 months ago

I understand your concern ... I'll be blunt ... Get a second opinion ... It's your life and health.