Hi. I have been scheduled for a lobectomy (upper right lobe) and scared. A pulmonologist told me I had nothing to fear and suggested repeat scan in 6 - 8 months but to not worry- it was nothing. My rheumatologist however, felt from viewing the radiologist report, that it seemed inappropriate to leave it that long. I had a pet which indicated uptake as well as already increasing in size.
After spending a few minutes with a surgeon, he highly recommended I have it removed via vats and have a RUL this upcoming Monday. This has been over a 6 month time frame and I am petrified. I just turned 50 and single mother to an 8 year old daughter. I have very minimal support except from my 30 year old daughter and feel like I am not ready for this yet. I'm a complete nervous wreck!
Is this normal to feel this way??
I would appreciate any suggestions or answers. The surgeon says after reading all of the radiology report, he can not definitely confirm cancer, but the appearance and likely hood of this being cancer are extremely high.
I'm wanting to postpone for a couple of weeks but I feel I'm going to have to do this. So torn and so scared with no one to turn to.
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SherryJaz
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Hi sherrylaz, so sorry to hear youre stressed about your surgery, its completly normal to have so many fears and emotions, its a huge rollercoaster that we have to go on, you will get lots of advice and support from this site as were all in the same boat. At 52 I was diagnosed may 2014 and had 2 thirds of my lung removed, it was a 6month recovery for me, im now back at work and 1 year on im fit and well and did a 15 mile walk last week ! you'll get lots of support from the Roycastle team too, please feel free to ask me any questions, and remember youre not alone there will always be someone here to chat with and have a rant if you need to !
I would think it was normal to be frightened after a diagnosis and before on operation.You also have your 8 year old daughter to worry about,there would be something wrong if you were not feeling unsure about things.Do not be hard on yourself .I hope you get more information soon that helps you make your decisions.Best wishes.
I had my bottom lobe from my right lung removed 13 weeks ago, my attitude was lets just get on with it and get it sorted as soon as possible, but I think I was a bit numbed by it all . I celebrated my 60th birthday in hospital so will now be around to celebrate many more. I understand your feelings and not sure we are ever ready for it but you need to have it done as soon as possible. Mine was done by key hole surgery and I have not had any pain, I can say it was very uncomfortable for several weeks and needed to rest but that has eased a lot now, I am still a bit tender and sore and know if I have done too much ie cleaning windows and washing down walls was a mistake a few weeks ago, but one has to do these things to learn. I get a little breathless when walking up hills but then so do a lot of people who have not had surgery. Do you have a support cancer group in your area, they will be very helpful and this site is so good and ring someone at the Roy Castle Foundation if you need to, they are so helpful.
Do accept any help given to you and especially from your daughters, rest and you will be up and about in no time. Hope all goes well for you.
Hi Sherrylaz, Like the others have said give the Roy Castle Foundation a call , or Macmillans they are there to support and help you. I had a pneumonectomy (my whole right lung removed) two and a half years ago. I am still here and getting on with life. Put your trust in the surgeons they are experts, and wouldn't suggest surgery if they weren't sure. I think you will be surprised how quick you can recover from surgery.
Sorry you find yourself on the forum but I am sure you will get lots of support from members. Your feelings are entirely normal given the situation you find yourself in. You have had a lot to take in and weigh up in terms of surgery and how serious a situation you are facing. One of the tricky things can be knowing when changes in the lungs are worrying and when they should be monitored - what the clinicians call "watch and wait" - which sounds like what your pulmonologist first recommended.
You need to make the right treatment decision for you. If you need time to think that is something to discuss with your consultant. We do have a surgery booklet (and some material on our DVD in our Lung Cancer: Answering Your Questions pack) which might be useful for you and can be sent to you today if you want to give us a phone on 0333 323 7200 option 2.
I am sure this is a tricky time for you with your daughters, but don't ignore the friends out there who will be only too willing to support you if you are able to ask for their help. Thinking about this as a period when you need help just now, but will give you the best chance of a full recovery for the months/ years and lifetime ahead.
Do give us a call and we can send information or have a chat through your questions,
best wishes
Lorraine
on behalf of Roy Castle Information & Support team
The pet scan should have told them if it was cancer. If it's growing, they usually get it out as quickly as possible. Try to be calm and positive. Easier said then done. I had an 11 mm. Nodule out 2 yrs. Ago in march. I also had vats, which wasn't bad. Do you know how big it is?
Please let us know how you make out. We're all here for you.
Mine is 6 cm stage 2a...no spreading, done 2 rounds chemo and 1 left to do then surgery will i be ok?
I had an open right upper lobectomy in March this year ,I am 54 with an older family ,but like you I felt getting rid of the problem was essential but terrifying .I still did it, I am walking about swimming when I can doing up to 20 lengths a time when I can as I am undertaking chemo at the moment, which I required as lymph nodes were involved ,you may not as not everyone needs this .I believe that VATs surgery offers a slightly quicker recovery . Progress after surgery was slow but steady after 3-4weeks I was starting to pick up quite quickly ,now I am short of breath on sharp inclines otherwise ok ,I just stop for a minute or two then carry on .My message is do it , get help at home in what ever form it takes especially in the early days post op ,once you have done this it will be behind you. Good luck with your sessions and future health.
I would ask for a second opinion at another hospital. Can they not take a biopsy? I was always told the only way to diagnose cancer was cells under a microscope.
If you do have to have a lobectomy , its not nearly as bad as I thought it would be. I had open surgery to remove the upper, middle and part of lower right lobes. I was in hospital 5 days after and ok at home, except slept almost sitting up and struggled washing my hair a few days.
Hi Sherry,Having read your replies so far,I can only add that I went through a upper right lobectomy in January 2009.I do remember just prior to my surgery my anxieties ,for example,will the surgery be excruiatingly painful?,will it leave me a breathless invalid?what if the surgery is unsuccessful ?. These and some other scenarios no doubt were dreamed up by my overactive imagination I have since forgotten.
Well nothing even close to my anxieties became a reality,the surgery left my wound site a bit achey for a while,to say painful would have been a bit of an exaggeration,although I did use it as an excuse to avoid doing the household chores LOL.As far as being left a breathless invalid?well I am a regular visitor to my local gym,which also includes swimming and yoga-ing.OK I will not claim to be able to climb Mt Everest,but then I could'nt do that prior to my surgery anyway.
Here I am today almost 7 years after my dx enjoying my life to the full.I wish you every success with your treatments and can look forward many years of pleasure raising your child.
i know you cant help being scared but i think you will have to trust the surgeon,i wish my tumours had been caught earlier but im afraid i left it to late and now they are unoperable.all the very best with whatever decision you make, tom x
Sherry I certainly wouldn't recommend leaving it for 6-8 months. Is there any way you can get a very quick second opinion? If not make sure that the tumour is tested for all possible mutations etc. also did your specialist confirm that it was only the one tumour that lit up on the PET scan? Make sure that your medical team follow up with CT scans and further PET if you think necessary. As for the lobectomy I believe Vats is easier, but exercise as much as can without tiring yourself out our causing any pain.
Thank you for so many kind responses with a lot of information. I ended up in the emergency room last weekend with bronchitis and the surgeon cancelled the surgery for last Monday. They can not reschedule the lobectomy now until August 17th. The nurse seemed VERY upset- almost like I could have "prevented" getting sick, and commented that it's extremely dangerous to wait this long for the surgery and eluded that I may need to find PERMANENT care for my daughter if I do not have the surgery done asap, but the surgeon is booked until August 27th.
I've had 2 pet scans, the last was June 17th. The nodule was 7.5mm 8 months, 10 mm on a ct 5 months ago, and now it is 14mm according to last pet scan. Uptake was indictated on both pet scans. It also revealed a history of histoplasmosis with a capuslated mass on my left lung, along with a few capuslated lymph nodes, which did not seem to be worrisome to the surgeon.
My fear is that I have had extreme fatigue, lower back/hip pain, along with the RA and lupus (which I can not take the medicine for until the nodule has been deemed not cancer yet surgeon and radiologist are certain that it is- which means NO medicine ever for ra or lupus) that has basically taken the ability to live any type of normal life this past year. The surgeon doesn't feel that the nodule suspected to be malignant is causing any of my symptoms. I have had a productive cough with hoarseness and wheezing as well. I can't help but feel so confused from having so many different opinions from the first surgeon that saw me once and told me to "watch and wait", the pulmonologist that went from saying I'm being overly worried and to "watch and wait", yet the surgeon I have been seeing the past 4 months has been vehemently adamant that I need this procedure done asap. My family physician just looks at me and says "yeah they think it's cancer- what's holding you up?" Depression, lack of any type of family support and care for my daughter that just turned 9 last weekend, panic attacks, and the inconsistent advice from all of the doctors and surgeons that I have been sent to along with becoming bedridden with absolutley no help. I have to give my oldest daughter a 3 week notice for her to schedule time off of work. So as of now, my surgery is scheduled for August 17th.
I fear the depression is taking a major hold of me and the fear that it has spread much more than suspected and the body pains that are already making it next to impossible now to go anywhere are becoming too much for me handle alone anymore. I lay in bed nightly praying for direction and answers and strength for another day.
I'm so sorry for my negative rantings. I should feel very grateful to be eligible for surgery- I just feel so confused!
no apologies necessary, it sounds as though you are having a hard time. I wonder if you have access to a Lung Cancer Nurse specialist? They should be able to provide some support and guidance in this strange limbo period.
best wishes
Lorraine
on behalf of Information & Support team @Roy Castle
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