Biopsy diagnosis

[dunnellon]

I had a needle biopsy on 6/23 and yesterday the pulmonologist called with results. I was not home, I was having an MRI w/contrast of a T11 vertebrae. My husband took the call and was told it was 'highly suspicious' and I would require another biopsy of a different kind! He was too stunned to ask what kind of biopsy and what else the nodule could be?! The Dr. office was closed by the time I got home and now here we sit for the weekend with no answers, just more questions. Anyone else require a second biopsy of another kind?

[Jenniferroseolson]

I’m sorry you have to wait...again...for another biopsy and more waiting for results. Unfortunately, sometimes the location of the nodule is such that a surgeon can’t get a perfect sample for diagnosis on a first try. The hope is that the second biopsy will yield enough/right kind of tissue sample to definitely name it benign or specifically which kind of cancer if it is such. I have a good friend who required multiple biopsies before they were able to define hers as Hodgkins lymphoma, and the waiting was more difficult than the knowing what the plan would be to treat her. And if only one spot lit up on the PET scan, that is terrific-small victories. Best wishes. Please let us know how it turns out. There is a wealth of experience here if you need it.

Jennifer

(Stage 4 nonsmallcell lung cancer patient for 5 years)

[dunnellon in reply to Jenniferroseolson]

Thank you, Jennifer, for your reply. I really appreciate the knowledge and support I've found here. Sometimes it feels like being lost in a haunted house.

[Denzie Moderator Volunteer]

Sometimes they will do an endobronchial ultrasound (EBUS) to take a brushing of the lesion. The doctor can better visualize the mass. It’s not always an option so it’s good that it’s available to you.

[dunnellon in reply to Denzie]

Have you experienced one? It sounds torturous,

[Denzie Moderator Volunteer in reply to dunnellon]

No I have not but I’ve had endoscopes that go much further into the alimentary canal for biopsies than an EBUS. It was about 8 hours before I could produce saliva and I had a mile sore throat that lasted about 12 hours. The pain was likely the result of the biopsies of the esophagus. I have these done every 5 years.

[dunnellon in reply to Denzie]

Thank you for the info, I appreciate your input.

[JanetteR57 in reply to dunnellon]

I've had several bronchoscopies over the years - one where I was under general anaesthetic and the others with local - all but one were ok - the one that wasn't, I coughed a lot and they only managed 'bronchial washings' and determined I had pseudomonas - an antibiotic resistant healthcare acquired infection.... Generally although they tell you to have somebody drive/collect you, it's to do with the sedation rather than anything else - no real side effects - sometimes a bit of a sore throat but nothing else.

I'm a 9+ year survivor of lung cancer - this experience was in 2017. One of the difficulties at the moment is that all procedures using endoscopy (bronchoscopy) included are being limited due to the risks of covid 19 which is why it can be tricky to get biopsies using other methods. I didn't have a biopsy before having surgery to remove half my left lung as it clearly showed on all 3 types of imaging - Chest x-ray, CT scan and PET scan. They sent off a section during surgery but couldn't determine what it was so learnt a month later the specific type.

Now so much depends on the specific treatment agent that's given (many were not around when I was diagnosed) so as others have said, it's really important. good luck and let us know when you know more...

[dunnellon in reply to JanetteR57]

I have a first appt. with an oncologist tomorrow. Hopefully she can tell me something. I keep thinking that if it's not malignant, they'll still want it out, so why bother with another biopsy, unless it's a VAT? But then, I'm not the doctor, am I?! May I ask, did you get a second opinion before your lobectomy?

[JanetteR57 in reply to dunnellon]

No - I'd already wasted months - I'd gone to A&E as an emergency in the October, discharged despite them finding a 'lesion' on my left lung, then readmitted the next day with worse symptoms despite meds and kept in for 6 days, misdiagnosed as uncontrolled asthma. booked in for a CT but scanner broke down and parts had to be ordered which took another month or so. then a week later given results but retracted what had been said when I questioned it. a couple of days later sent for PET scan and a few days after that had a letter to see a cardiothoracic surgeon a week or so later. A few days later had a call from surgeon's secretary saying he had to see me first thing the next day. he said they could see a 'large mass' in my left lung and it had to be removed urgently whatever it was and then sent away to find out what it was. until they found out otherwise they were treating it as lung cancer and when they knew they would determine what other treatment may be needed. As the tumour was already 7cm x 2.9cm x 2cm - like an egg - it had to come out anyway. I thank him for saving my life... and the young man who sent me for the chest x-ray . a month later at my first surgical follow up I was told it had been malignant lung cancer. I'm unsure what you mean when you say a VAT? We use that term in the UK to mean video assisted thoracic surgery for removing the whole or part of a lung. my surgery was open thoracotomy - keyhole surgery wasn't available back in 2010 for lung surgery. The surgeon said now they'd found it, they liked to act quickly and when I told him how much I'd already been messed around, he was shocked - thinking I was just a reading from the recent PET - he didn't know about the A&E, misdiagnosis and delayed CT. still feel lucky to be alive...

[dunnellon in reply to JanetteR57]

You had a lot going on there! VAT is video assist and I understand can be used for a wedge resection.

[JanetteR57 in reply to dunnellon]

VATS or RATs (robotic assisted thoracic surgery) can be used for a lobectomy and even a pneumonectomy in some instances. I thought you meant as a procedure for biopsy rather than surgery itself....biopsies usually done via needle biopsy, bronchoscopy or EBUS or post surgically from resected tissue.

[JanetteR57 in reply to dunnellon]

in the UK wedge resections are rarely done - the gold standard is to remove a whole lobe is cancerous... single port surgery also being performed in some centres - saw a video last year of a single port through the abdomen to avoid the major nerves involved in open surgery. some really interesting surgical progress made in thoracic surgery - before covid 19 came along....

[Denzie Moderator Volunteer in reply to dunnellon]

Surgery causes trauma to the lungs (a major organ) and takes much longer to heal than an EBUS or a needle biopsy. You should not want to subject yourself to unnecessary surgery as there can be more long term side effects with it.

Should surgery be deemed necessary it is the best chance for healing and curing cancer.

[dunnellon in reply to Denzie]

I tend to get ahead of myself. As a patient, I always want answers 'yesterday' and doctors are always 'See you in three weeks."!

[Beepers7 in reply to dunnellon]

Hi funnel Lon,

Just saw your post, so might be a little late with response. 10/31/19 I had a needle biopsy which was then followed by EBUS a week later. The EBUS went well with little to no discomfort. I was totally sedated and woke up with only a dry throat.

Best wishes to you as you go forward towards diagnosis. Keep the Faith and always try to stay positive.

God bless you

[Beepers7 in reply to Beepers7]

dunnellon

Sorry about the “funnel Lon “

😊

[dunnellon in reply to Beepers7]

Thanks Beepers, for the encouragement!