I’m new and I’m scared

[Daria]

I am a 54 yr old female recovering from a lobectomy (upper left) which was done on 8/28. My surgeon told me its stage 1 and that I don’t need further treatment.  I asked for a referral to see an oncologist because I’d like another opinion regarding treatment.  I’m very scared and I’m hoping to get some information and support. Thank you 

[LexieCat]

Hi, Daria, and welcome. Do you know if you're Stage Ia or Ib? From what I understand, chemo is NEVER recommended for Stage Ia, and with Stage Ib it's debatable whether it will provide any benefit. I was Ib and opted for no chemo after my surgery three years ago. Unfortunately, I now have Stage IV cancer centered on a tumor in my other lung. Doctors say there is no way to tell whether this is a recurrence of the original cancer or a completely new, unrelated one. 

Definitely get another opinion on the chemo, but know that at Stage I, it's perfectly reasonable to omit the chemo and follow up with scans. 

I'm starting chemo next week, which may or may not be followed by radiation, depending on how I respond.

[Tom Galli]

Daria,

Welcome here.

In my long tenure with this disease, I often run into folks who have a successful Stage I resection and never have a problem. Sadly, lung cancer is so dangerous because it frequently recurs even after a successful resection with clean margins. For this reason, I think it best you consult with a medical oncologist.

The first thing I would ask of your oncologist is to have the resected tissue sent for laboratory testing to determine suitability for targeted therapy or immunotherapy. However, some insurance plans will not pay for laboratory testing for Stage I disease. If this is the case, then at least your oncologist can (should) determine where your tissue is stored in the event of a future recurrence. Your oncologist will likely recommend a program of CT scans to screen for recurrence. This is important because studies suggest that there is a 33-percent chance of recurrence after successful Stage I treatment and screening will detect a recurrence in time to address it before metastasis becomes widely spread.

I do hope you are recovery is rapid and you rejoin life activities (COVID permitting). 

Stay the course.

Tom

[LouT]

Daria,

You're already getting good information from Tom and Lexie, but let me welcome you to our forum and also tell you that we've all been where you are.  The anxiety, fear of the future and questioning of what to do next.  Tom is correct about getting an oncologist and you should do so.  Like you I was diagnosed as Stage 1, more specifically 1a.  In my case they did not recommend chemo after the lobectomy.  Regardless of stage a discussion with an oncologist is a smart move, if only to make you feel more comfortable.  

Lung cancer is a disease that can recur, but please also understand that many people in the forum are living with NED (No Evidence of Disease).  LC today has so many more treatment options than years ago and new ones are always in development.  So, as a survivor of colon (2010) and lung (2019) cancer, here is my advice:

1. Get your oncologist, explain your concerns and let him help you (as Tom stated) as well as letting you know that you are following the best treatment and monitoring plan.
2. Try not to "catastrophize".  I used to have a PHD in it...but now I take one day at a time and have learned to enjoy the life I have and used to fear losing.  If you need some medication to get you through this initial tough spot then speak to your doctor.
3. Ask questions you have here in the forum and in your doctor's office.  The more you can put your fears into questions and get answers to, or examples of how others have faced them, the more calm you will be.
4. Focus on each day and find things to experience that please you and are fun.
5. You're here and had successful surgery, you made it through and can participate in your treatment plan.  Don't hide in fear from it, be a participant in your health.  
6. Remember, you're stronger than you think and you can do this.

We were all scared, anxious, questioning the future, but we made it through and are still living and to paraphrase Tom, "if we can live, then so can you".

Lou

[Daria]

Thank you so much for all the encouragement.  I feel completely blessed to have found this as early as I did and for having it removed (stage 1a).  Unfortunately I’m focusing way too much on the possibility of a reoccurrence.  My mother died of lung cancer in 1995.  Despite what we thought was a successful surgery, the cancer spread to the brain, the adrenal gland and probably other areas.  I was scarred by the experience.  

I agree I have to focus on the strides made in the last 25 years in cancer treatments.  Logically I know this, emotionally I’ve gone to pieces - which is unusual for me since i would never be described as an emotional person.  I rarely cried prior to this, now I cry morning noon and night. 

I’m so grateful to all of you responded. I am also so grateful that I found the support group. I will take all of the advice given and starting today will try to live my life with a more positive outlook.  I will also talk to my doctors about antidepressants, I think they might be useful to me.  
 

Lexi Cat, I’m so sorry to know that you had either a reoccurrence or a newly developed cancer in your other lung after 3 years.  If you don’t mind my asking, why is stage IV if it’s not clear whether or not it’s a spread or new?  Was it found elsewhere? 
 

Thank you so much again for your responses.  Today is already better than yesterday having received your positive messages. 

[LexieCat]

49 minutes ago, Daria said:

Lexi Cat, I’m so sorry to know that you had either a reoccurrence or a newly developed cancer in your other lung after 3 years.  If you don’t mind my asking, why is stage IV if it’s not clear whether or not it’s a spread or new?  Was it found elsewhere? 

Yes, I have a 7 mm lesion on my sacrum that is presumed to be a metastasis--it's not possible to biopsy it, but there was a high uptake on the PET-CT and could be visualized on an MRI. So the doctors are all going on the assumption it's a metastasis.

[ChiMama]

Hi Daria, I also had an upper left lobectomy, in mid-July. Mine was stage 1a and the standard of care is no chemo, and regular scans to monitor going forward. Finding it early is a blessing! It's definitely good to have an oncologist to oversee your care, so I hope your referral comes through soon. I already had an oncologist from a previous different cancer, for which I also didn't need chemo. He's in charge of my scan schedule.