recurrence after lobectomy

[Bibicata]

Hello,

I am 53 and live in the UK and I stop smoking in my late 20’. I had a lobectomy of my right lower lobe in April 2022 to remove a minimally invasive adenocarcinoma staged pT1 N0, M0, PL0, R0 (found by complete accident on an abdomen CT scan.)

I begged for adjuvant therapy after the operation as I was terrified to find out in the histology report that the only mutation found was Kras G12V (with more risks of recurrence and very bad prognosis in case of recurrence (no targeted therapy etc).

But I was told that my risk of recurrence were extremely low by the lung specialist and <5% by the oncologist and that I did not need adjuvant therapy as the tumour was only 1.2 cm and the invasive part only 0.6mm when removed “successfully”.

I also was told that the other stable nodule in my right middle lobe was stable at 6mm and very likely to be a benign perifissural lymph node.

But unfortunately the scan taken 18 months after my lobectomy showed a new 5mm nodule in my left lower lobe this time. This time the nodule is not sub-pleural but deep in the lobe.

The lung specialist did not want to pronounce the word recurrence but just said it was obviously suspicious and just ordered a scan mid January 2024 as for the moment it is too small to say. He also did a very minimal blood test (with normal results). They could not see any other abnormalities on the CT scan. I have asked them to do a bone scan as I do have pains in my right ribs that feel like spasms sometimes when I have exercised. I was told it could be chronic pain due to damaged nerves/ adhesions because of the Lobectomy.

Two weeks later I am so confused.

I am scared and constantly crying as I well know that there is more risk of recurrence than it being a second primary cancer so early after the operation or just a benign nodule. I looked at the prognosis with an early recurrence and a kras G12V mutation (only) found in the first tumour removed in 2022, and this is so depressing…

Is there anyone in the UK or anywhere else with a similar experience ? Recurrence of adenocarcinoma Krasg12V in opposite lung ?

What is your experience ? It is seems difficult to find posts from members with this mutation and recurrence (even on Kras kickers forum) even if this mutation is very common. So, this is even more worrisome.

Thank you in advance for your replies.

[Cosmic54]

I have no answers for you all I have is being sent to you via virtual big hugs I so hope you get the answers you want my heart goes out to you my lovely stay strong for your own sanity.. I’m having my last immunotherapy next month 35/35 what will be next I have no idea 🤷‍♀️ I have stage 4 lung cancer whom I call Beryl she’s my lung lodger she plays up now n then so a bit of morphine usually shuts her up. 👍💋

[JanetteR57]

Sorry to read of your situation and it is natural to be scared when such things happen.

Sadly there are some for whom it can recur after lobectomy but it is quite rare. During the pandemic there was a move to reduce access to hospitals which chemotherapy involves and with evidence showing only a less than 5% reduction as a result of such harsh treatment, the advice your consultant gave was correct. It can also be influenced by the patient's ability to tolerate such harsh treatment which comes with side and late effects often.

When my 7cm tumour was found in my upper left lobe and I had an open thoracotomy lobectomy, I was told there was no evidence that chemotherapy worked for the rare type I had so I wasn't offered adjuvant chemotherapy. I was 52 and never smoked. I don't know my mutations as back then the only targeted agents were for EGFR which I didn't have and then only available on clinical trials. That was in 2011. I remember reading that Robert Peston's wife, Sian Busby had a lobectomy and it returned a few years later so knew there was a faint possibility it might return. Nowadays they are discussing the possible use of neoadjuvant immunotherapy before surgery for some dependent on mutations (i.e. before surgery) so just because you didn't have chemotherapy doesn't mean there might not be treatments if it does turn out to be cancer.

Since targeted lung health checks and screening pilot schemes started in UK and elsewhere, it has become evident that many of the population have lung nodules - most of which turn out to be benign. There are now protocols on managing lung nodules as a result which involve size, volume doubling time, any other factors as to whether a patient is returned for a repeat scan some months later or discharged.

Often infections like pneumonia or other inflammatory causes can trigger them to show on images but they resolve on later scans so clinicians cannot overreact and keep removing part of people's lungs 'just in case' or deliver unnecessary systemic anticancer treatments as that would constitute harm. 5mm is small and a common discussion by clinicians when discussing nodules is that many are too small to intervene or even biopsy hence the surveillance paths to see if anything happens or not. The majority will not be cancerous.

Pain is more often a symptom of late stage cancer as the lungs themselves have no pain receptors and a nodule is unlikely to be the source of pain in that area. However it is common that nerves/muscles take time to heal internally after lobectomy. Some patients can experience this for months and sometimes years later. I still have a sharp twinge if I bend down in a certain way and my surgery was in December 2010.

I initially recovered well and recovered fitness as my surgeon told me that keeping active was crucial so it's good that you exercise. Even those who haven't had surgery will have aches and pains if they exercise so sometimes the symptoms of breathlessness and aches/pains that we attribute to our cancer diagnosis can be a natural reaction to exercise.

I understand our thoughts can take us to bleak places and affect emotions hence crying. K-ras was thought to be 'untargetable' yet in recent years treatments have been found to treat it.... and one or two are in use and others being tested in clinical trials. With rare tumours, it's unsurprising if there is little information on chat forums like this - I remember finding out about cases like my rare type in SE Asia at the time (2011) but nothing in the UK. However sites like this and the various targeted groups didn't exist.

Hope you get some answers soon but never give up... there are countless trials around the world all working on many different aspects of lung cancer and every year more treatments are approved, if they evidence superior outcomes to current treatments... in the meantime, keep as active as you can to protect mind and body. good luck.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Bibicata

Sorry to read your post and understandably, your anxiety with everything.

JanetteR57 has provided a detailed reply of which there is not much to add. As you know, with any history of cancer, they investigate to rule out any further cancer, of which it may not be. Often lung nodules are too small to even biopsy and they wait a few months before re scanning to observe if stable or any growth.

An urgent CT scan is often done within 2 weeks, so hopefully encouraging that it is January, but can appreciate the anxious wait you have to find out. I hope you hear from others in the forum to provide support for you.

You may want to get in touch with the patient support website KRAS kickers : kraskickers.org/

This is their support services link:

kraskickers.org/krassupport...

Although they are based in America it may be useful to find some support for this specific mutation of help for you.

If there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[Bow-19]

Definitely worth contacting KRASkickers. I also think treatment in the U.K. has moved on. You can always ask for a second opinion from someone who specialises in KRAS. You are bound to be very concerned. Thinking of you

[Bibicata]

Thank you to all of you for your replies and your encouragements.

I am already a member of Kras kickers and even Kras kickers G12V.

I guess I got to focus on trying to exercise and get fit and keep busy. But it is touch as I lost my dad of lung cancer and like me he had a lobectomy but he cancer came back in his other lung. So I am obviously terrified of history repeating itself.

Thank you again for your messages.

Sylvie