The Colon Club

I went in for my 5 year post chemo visit to find that there were some concerning findings on my most recent CT scan. I went from feeling on top of the world to worrying constantly. I have a 1.5 cm nodule on my lung with spiculated margin and some cavitation. My "benign" adrenal tumour is now 3.8 cm big (up from 2.5) and I have small lesions on my thyroid. It's all very confusing though, the oncologist sent me to the thoracic surgeon who seems relaxed and says I can wait a month for my PET scan and possible biopsy (I am scheduled to fly back home to Canada for a month). He sends me to the Surgeon for the Adrenal tumour - that is next week. I am stressed and calm all at the same time.

The thoracic guy seems concerned but says that the lung thingy is small and slow growing so there is no rush. I know that this is nothing compared to what other forum members have gone through but I value your opinions.

Should I be cancelling my trip home and getting the PET scan now? The thoracic guys says I can't fly for quiet a while after a biopsy.

Advice from experts?

Hi,
Really sorry to hear your news. I think with your health care system you are able to get very prompt scans and results. Here in the UK we don't have that type of speed . A lung nodule was detected in Late October for my mum her meeting with the surgeon took place after Christmas and was removed early Jan. We relaxed and enjoyed Christmas as the lung was slow growing. It can take weeks just to get results. There are many , many positives with our system but speed is not always one. We are used to it.
It's up to you in the end but you could have everything lined up for when you come back.
Just to share and reassure,
Stu

Thanks Stu. Yes, I am lucky. With a combination of public health and insurance, I have good access to health services.

I was recently in a similar situation. Five years out and a growing nodule in my lung. I personally pushed to have the biopsy done quickly. I can't say this mattered medically. The nodule was very slow growing. It was something I personally wanted, as I hate sitting with uncertainty. We have enough of that. I know how you feel, being all ready to celebrate the 5 year mark and suddenly being back in the game. For me, the nodule turned out to be a met from the colon cancer, moving me from stage III to IV. My understanding is this is unusual, and most nodules turn out to be benign. I will be hoping this is the case for you.

I'm sorry you find yourself in this position. I think your Dr. is probably right that a month won't make a difference. After all, it took 5 years for things to get where they are today. Just keep your psychological needs in mind.

Hi Dan,

I am sorry to hear that. I know how we cherish every day that we are cancer free.

Can I ask, what is the treatment plan now? I am assuming that mine is definitely cancer - met or new primary, based on the report. I am more concerned about what happens once it is identified.

cheers,
SWS

Sunwaterandsky wrote:Hi Dan,

I am sorry to hear that. I know how we cherish every day that we are cancer free.

Can I ask, what is the treatment plan now? I am assuming that mine is definitely cancer - met or new primary, based on the report. I am more concerned about what happens once it is identified.

cheers,
SWS

Good question! After the biopsy was a PET scan, which showed no other activity. I had the met removed a few weeks ago (which was a breeze). I go see my oncologist in ~4 hours to talk about what comes next. When we last spoke, she showed me the recommendation flow chart from the National Cancer Something Something, which indicated there is not enough data to have a standard course of treatment when a solitary met appears 5 years out. She said we will have to decide whether to do another round of chemo or just observe. Whatever she recommends today, I intend to get a second opinion. I think the reality is that it is uncertain how likely more mets will appear, and whether the insurance provided by another round of chemo would outweigh the damage that chemo does. I've already lost a lot of feeling in my feet, for example.

I'll post more when I know more. Sorry I can't ease your mind. Isn't that always the story with this stuff?

Dan, I appreciate your efforts to ease my mind when your mind must be pretty full right now! I hope that the consultation today went well and that you have a plan that you are happy with.

Cheers,
SWS

Well, I spoke with my oncologist. As expected, she reiterated that the data is thin for what the best approach is for someone in my position. She is recommending CT's every 3 months for a while, then every 6 months. She has also offered a couple chemo options if we feel the peace of mind is worth the effects of the treatment. I did not realize that the value of chemo drops off 6-8 weeks after surgery, so I need to make a decision relatively soon.

I'm setting up a second opinion with someone at the Mayo Clinic who is a bit more involved with the current research to see what he thinks.

DanInMN wrote:
I'm setting up a second opinion with someone at the Mayo Clinic who is a bit more involved with the current research to see what he thinks.

SWS,

5 years out, that is rough. So very sorry this is happening to you. As Dan stated above, that is my advice to you, get a few opinions. The good news, there are options for dealing with this if they are in deed mets.

You will get beyond this,

Lee

Sunwaterandsky,

Can I ask where the nodule is located in your lung? Based on my limited experience, I find it strange they are saying you can't fly for a while after a biopsy. Maybe it was because mine nodule was close to the rib cage, but the biopsy was quick and simple. I was partially knocked out to "relax" me, but not entirely as I needed to be able to follow instructions. I laid on my side in the CT scanner and the radiologist pushed a needle in maybe 5-6 times. There was basically no recovery time. I had a small bandage for a couple days and had to sleep off the anesthetic. Flying would have not been an issue even the next day.

Also, do you have any useful CEA results?

Hi Dan,

My nodule is in the right apical lung. He said that we need a more accurate scan to see exactly where it is and how easy it might be to access. My CEA is low but it was never a marker for me.

Apparently you run the risk of a lung collapse if you fly too soon after a biopsy or surgery. It is better to wait that to risk it.

A second opinion is a touchy thing here. If I have any surgery, that will top out my insurance and I'll have to rely on the public system. The public system is good, if not pretty, but there is little choice once you are in it. I am lucky that we have such a high population density that I can see any doctor within an hour's travel.

CT scans every 3 months and wait and see must feel a bit scary at this point. I hope that it goes well!

SWS

So today was my big day. I had quite a journey to get my PET scan. The airline cancelled my flight, I had to reschedule my PET scan, the insurance approval had lapsed and so on..... but I got it and all was sorted in time.

Today I got my results. My little lung nodule is now 2cm big - 5 mm growth since last scan- and has a 2.5 uptake. The surgeon says that it is definitely not scarring and it growing. He is reluctant to label it cancer but once I labelled it cancer he said it was most likely. He says that it is more likely to be a new primary than a CC met. We'll find out soon enough.

I asked what the next step was and it's VATs. When I asked when... He said Monday! I was a bit freaked out by that and we settled on the 22nd. This will give me time to sort out some family support. I live in Hong Kong and the family is back in Canada.

This was what I expected and had researched. I have a good surgeon and I am lucky that I have had yearly scans and this was noticed. Although I guess you could argue that the yearly scans could have caused a new primary.......

Feeling positive knowing that this is going to be dealt with. I don't think I could have handled a "Let's wait and see" approach.

Cheers,
SWS

I'm curious as to why the surgeon thinks it's a new primary.

Either way, I agree I'd want to get rid of it and move on. I've had VATS a couple of times and it was very easy to get through.

I wish you the best.


Ann

I know the waiting is the worst. I had my l year ct scan last April and a 4mm lung nodule was found. I see a pulmonologist due to scarring and inflammation in the lungs discovered after chemo. Monitoring me for an auto immune disorder. My oncologist felt it was from the inflammation, not a met. My pulmonologist agreed that she didn't think it was a met but could be from the auto immune disorder, past infection and a new lung cancer. Both said it was much too small to biopsy so would have to wait and watch. I had a repeat ct scan in July and the nodule showed no change. No change or shrinkage is good so dr. will repeat again in 6 months. The waiting and doing nothing is awful as it is always in the back of your mind. When you are actively in treatment you at least feel like you are doing something. Very frustrating.

Susan