I have been put forward for the horrendous lung lobotomy surgery. They would like to mop up with chemo afterwards.

[Zac2018]

Has anyone been through all this and was wondering is it possible to have immunotherapy after the surgery, I’m terrified of having chemo.

[Ollie13]

Hi Tara not sure what to say but going forward your plan is now in place. Never had a lung lobotomy so can't answer that question. As for immunotherapy not everyone can have it you have to have certain markers. I had immunotherapy at first and it worked at the time but you can only have it once for a 2 year period.Chemotherapy wasn't that bad as I thought it would be for me, but I know everyone is different. Hopefully someone on here willbe able to help you xx

[Danni54]

Hi Zac! I just wrote a long message to you but I think I may have lost it! Did you get a message? If not then I will send another one. Having had a Lobectomy I wanted to tell you that it's not as bad as you will imagine! Are you having keyhole surgery? VATS Lobectomy? Speak later. Sending love and big hugs. Danni xxxxxx

[Zac2018 in reply to Danni54]

Hi Danni aww sorry I’ve not received it. That’s happened to me it’s so frustrating. Would be lovely to hear from you xx

[judg69]

Zac , I have pretty much had it all , maximum radiation & chemo followed by a thoracic lobectomy , then 2 more years chemo. I was IIIA/IIIB with a life expectancy of less than 2 years. Everything worked, still alive and kicking ( mostly, anyways lol ) . Best advice is get yourself into a positive mindset as that is crucial for your recovery and ongoing health. Best Wishes, judg69

[Zac2018 in reply to judg69]

Thankyou so much for your support, yes l’ve read your story, you’ve certainly been through it. I’m feeling so weak and scared. Everyone is so encouraging Zac xx

[Zac2018 in reply to judg69]

Amazing story you’ve gone through it all WoW xx

[judg69]

All Best Wishes Zac, you can and will get through it!, judg69

[JanetteR57]

I was saddened to read your post - what makes a potentially life saving operation horrendous? Yes, it's a scary time but surgery is still the treatment given most often with curative intent. I had open surgery upper left lobectomy (thoracotomy) in December 2010 and a 7cm tumour removed and diagnosed in January 2011 with adenocarcinoma. I was back at work and swimming by the end of March. I've gone onto swim much further since my surgery including one session of 360 lengths (25m) and 989 miles in a year. I've also become very involved in lung cancer research. Having lost a dear friend to lung cancer in the June 2011 diagnosed very late having been misdiagnosed as bad shoulder and sent for physiotherapy without any imaging meaning surgery wasn't an option by the time they found it, I looked at online forums and found his a common experience. My subsequent involvement has not only made me appreciate every day but also that I was offered surgery at all as in the UK very few patients are detected when its an option. When I had my surgery there was no keyhole surgery available now it's the majority of Uk lung surgery either VATS (video assisted thoracic surgery) or occasionally RATS (robotic assisted thoracic surgery). If you had anappendix or gallbladder that needed removing surgically, would you be asking the same question? What about heart surgery? Lung surgery has been carried out for decades and was a common treatment for TB in years gone by although nowadays they tend to remove a lobe of the lung rather than the whole lung. Not everyone even needs chemotherapy - and many who would have been offered it usually weren't in the pandemic due to the risk of contracting covid in the hospitaI so some were offered immunotherapy who otherwise wouldn't have been eligible. The pathway has changed so I would now have been offered it due to the tumour size. Immunotherapy is a relatively new treatment and for those in whom it works, it's changed things a lot but it doesn't work for all as it relies on our own immune system. Many who have chemotherapy afterwards are surprised - there are different chemotherapy agents these days and many do not have the side effects we associate - such as hair loss etc... far better to be informed from a trusted resource like Roy Castle lung cancer foundation that has really helpful clinically updated information on every aspect of lung cancer, its treatments and what it's like living with lung cancer. Good luck - hope you can be reassured by better information than Dr Google and by those who are grateful for having had such treatments to extend their life. Yes it's scary but the majority don't even have the opportunity for surgery for this condition so maybe this might reframe your perspective a little. I've enclosed a link and within it is a very informative downloadable book 'my lung surgery' with plenty of information and hints and tips about recovery. My surgeon told me a positive mindset and keeping active would help my recovery. Good luck for yours. roycastle.org/about-lung-ca...

[Zac2018 in reply to JanetteR57]

Thankyou Jannette, yes l should consider myself lucky to be offered surgery, l’m just so scared of the road ahead. I will definitely download the book thankyou x

[JanetteR57 in reply to Zac2018]

It's certainly a scary time and a roller coaster - if you like reading, I found the book 'cancer is a word not a sentence' by Dr Rob Buckman really helpful to move forwards with life.... good luck.

[Feelingblessed2013]

I cannot advise about immunotherapy, as I have never had it.I have had a lobectomy, I have actually had 2. I had my upper left lobe removed in 2013, and the upper right one in 2018. I am still here.

The others are right, a good attitude helps you recover faster.

After my first surgery, I went back to work.

Surgery is still considered the "gold standard" in cancer treatment.

[Zac2018 in reply to Feelingblessed2013]

Thankyou so much, they say surgery is good, I’m not really convinced ❤️❤️

[Feelingblessed2013 in reply to Zac2018]

You do what feels right for you. But surgical removal of the cancer is the the gold standard of cancer care.

[Denzie Moderator Volunteer in reply to Zac2018]

Had another thought. Most are not aware that surgery is done with curative intent. The chemo is a safety guard (mop up) in case there are loose cancer cells circulating.

[moowife]

My husband had surgery in 2018. He had chemo after recovering from the surgery. In 2021, he had immunotherapy.

[Steph60]

I had Surgery to remove my upper right lobe, and then had 4 rounds of chemo. While they were both scary, I never considered not doing them. Like someone else said you have to have and keep a positive mind set. Get a good support system in place and keep positive! It has been 8 years that I have been cancer free, so keep fighting!

[Zac2018 in reply to Steph60]

Wow so encouraging, 8 years l will try to be strong. I’m so weak at the moment, maybe I will get strength from somewhere xx

[Zac2018 in reply to Steph60]

Thankyou Steph l seem to be looking at the dark side of this disease, l need to start being a bit more positive 🤞🤞x

[Steph60 in reply to Zac2018]

I had pity party’s, so I do understand having them, but I would cry for 10 minutes or so, then I would dry my tears. I would then pull it together and keep fighting. I used to tell myself,-“if other’s can do it, so can I”, I know you can do it!

[hopejunkie]

Hi Zac, My father who is 78 y.o. was diagnosed with NSCLC with a 7 cm tumor in his LRL. He had an open thoracotomy removing his LRL. (His surgeon opted for an open incision (vs. VATS) b/c of the size of the tumor. ) We were all so nervous going into the surgery, but even at 78 y.o. he did well. He is 3 months out and hie back to "normal" and able to do all the things he could do before diagnosis. He tested positive for a mutation, EGFR so he takes an oral chemo, Tagrisso. He would have needed to "mop up" the cancer with chemo if he had not be EGFR+. Did your doctors do genetic testing or a biopsy? Genetic information can give them a better idea of of effective treatment(s) for your tumor type... Sending you thoughts of strength and calm.🌺🙏

[Zac2018 in reply to hopejunkie]

Thankyou for your reply your dads story gives me some hope, l am truly petrified over having the surgery, and the Chemo horrifies me. X

[StLScorp]

Zac ... Hang in there ... Have trust in your oncology team ... and IF you don't/can't then seek out a second opinion ... In January, 2020, I was diagnosed with non-operable Stage IV NSCLC ... I initially received several months of a combination of chemo and Keytruda after which I've been solely on Keytruda for 19 months now ... So far, I have luckily not had any adverse side affects from my treatment regimen ... I have learned along this journey that there is no one approach that works for all as there are so many different types of cancer markers that go into treatment regimen decisions ... For me, I have an amazing oncology team here in St. Louis at the Siteman Cancer Center ... Because of my team, I have luckily achieved an 80 % reduction of the two primary nodules, "resolution" of all the other areas, and have been stable now for about 6 months ... So again ... Hang in there, Zac ... Positive mind space can work amazingly

[Zac2018 in reply to StLScorp]

Thankyou Unicorn l am just so scared over it all, your story is inspiring, all l can do is cling onto the hope x

[Zac2018 in reply to Zac2018]

Apologies StLScorp, I am relatively new to the forum and got your name wrong, you have an amazing support network around you, sending you all my best wishes x

[Unicorn1967]

Hi Zac2018

Everything will be as it should be. I agree with the others lobectomy isn’t bad at all. I was back to work three weeks after my surgery. The chemo isn’t bad either… I was on the triplet and then just alimta and keytruda. For me it really wasn’t bad. I wish you all the very best! Take good care of you.

[Denzie Moderator Volunteer]

It’s normal to be afraid. For years we were told what a horrendous experience chemotherapy is. There are new medications that make chemo easier to manage. They prevent most of the nausea people experience. The only time I had a problem was when I forgot to use them.

[Zac2018 in reply to Denzie]

Hi Denzie what a remarkable story, you are a very strong person, unfortunately I’m at the opposite end to you.I’m continually scared of what lies ahead, I don’t think I’m strong enough to get through it all. X

[Denzie Moderator Volunteer in reply to Zac2018]

I was terrified! I wasn’t always this strong. Until I came through the other side of chemo I didn’t know how strong I was. Talk to your doctor about anxiety med. we’re the patients they were created for.

[cmilashoski]

Hi Zac, I had to do the surgery and do radiation before the surgery and chemo and then chemo after the surgery had a really large tumor in my right upper lung . From what they say the surgery is your best option of survival I unfortunately got a little bit of damage from the surgery nerve damage in my shoulder and hand but mine was in a tricky spot that they had to go through a lot of nerves to get at. The chemo gets a little rough towards the end you just feel so damn tired but you just get through it and I take medicine for pain but I'm 5 years since my surgery my husband passed away after 18 months from lung cancer so I feel like the lucky one. Don't be scared you're asleep through the whole thing you don't even know what's going on and besides being really basically tired and yeah definitely nauseated and losing my hair but I did Rock the bandanas. I definitely feel like one of the lucky ones thank God everyday that I'm still here but yeah I definitely got a little bit of nerve damage from the surgery but it depends on where the actual tumor is. You should be glad they're doing surgery most people don't have that option and that's your best chance of survival. You realize you're worrying a little bit more than you should. Yeah just got to go in with the attitude that I'm going to beat this monster!!

[Zac2018 in reply to cmilashoski]

Thankyou cmilashoski, l am just so scared, the fact people take months +++ and some never recover terrifies me.It’s a big op xxx