Free to Breathe
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I am worried that after 4 years and 5 months, it is back.

I went to my PC yesterday for surgery clearance (scheduled for rotator cuff repair on Wednesday). I had a CT scan last Friday and am scheduled to see oncologist in January.

Anyway, my PC told me that the CT scan showed a small spot on my upper right lung. The report says: "small pleural-based nodule in the periphery of the posterior segment right upper lobe measuring 7 mm (it was 2 mm in January 2017). It also says it is "nonspecific, but may reflect a developing metastatic nodule". They recommend a repeat CT scan in 3 months.

So now I am a bit worried (scratch that...very worried) but also a bit peeved that I was told by my oncologist in January that the scan was clear.

The last time I was very lucky, the cancer was found early, it had not had a chance to spread. I lost the upper left lobe to squamous cell lung cancer.

The past few months I have had this nagging gut feeling that something is wrong, now I feel like someone just pulled the rug out from under me. If I had known in January, I would not have allowed the oncologist to wait a year to do a re-scan.

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Katherine I am so sorry that this happened. Scans are nerve racking anyway for us and to tell us something is clear when it isn't is just not fair. For me, I always ask for a print out of the report just so I see in black and white. (I guess I'm not very trusting anymore.) Please don't be scared and please let us know how you are doing.

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I am going to start doing that. From now on, a copy of the report for my personal file.

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Hopefully you have a my chart online. I always read and reread all my results. When I went in and got scanned in early November the scan said I had a small 2mm suspicious mass that could be inflammation also. So I am getting rescanned in January. I also had squamous cell lung cancer with full removal of my left lung in February 2017

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I feel for you, I can't imagine losing an entire lung on one side. How are you doing now? Please let me know what the January scan shows.

All my scans are now being done at a local hospital, so I now have access to the written reports. I also went back through all my papers, the original cancer was found as a 2 cm tumor that showed up on an x-ray.

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My chart online is only as good as the information that is put in there. I have an account and my oncologist never inputs the results of my scans there. I too have started to get a print out of the report and a CD of the image.

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Katherine, I am glad you are back with us, but sorry you are dealing with this. You sound like a great advocate for yourself - please keep that up, and please keep us updated!!!

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I have been around, I just haven't posted. I currently have to type left handed, which is not easy.

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Oh my, that would be really hard! Thank you for doing that:)

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I am right handed, but I screwed up the rotator cuff in my right shoulder a while back, been putting off surgery for as long as I could. Getting it fixed tomorrow (weather permitting).

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Best of luck to you, I will hold you in my prayers tomorrow! So sorry you have to have that done.

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Good luck today!!!

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Surgery went well. I was able to come home today.

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Yippee! Welcome home. Rest, heal, be kind to yourself:)

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KathrineK I know how you feel I,m at the 5year mark that's the problem every year that goes by you think it's not coming back but every scan you think is it back ? When I go and it hasn't come back it takes me a at least a month to relax and realize it's. Not back. I,m sorry you had to go through this. Please Don,t be afraid I know it's nerve racking. We are all here for you if you need to talk rant we will be here for you. That Dr. Should never said that you were clear that. Let us know we will worry about you I will pray its Not back I,m sending a lot of hugs from all of us susiejo1948

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Thank you Susiejo1948, I will keep in touch with everyone here. I have learned from someone on another support group that if it grows 3 more mm to 10 mm that is 1 cm and at that point they can do a needle biopsy. So, I won't know anything until some time in March.

I go through that stupid scan anxiety with every scan, but until now they were clear.

Congratulations on being 5 years cancer free. Here's to another 5 plus.

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Katherine, I was told in Feb. I was still in remission and then in June, my scan showed four new nodules. Three in right lung which had always been clear and a new one in left lung near where cancer was before.

Got words similar to those on your report. Worried my cancer was back but scan was clear in August. Must have been some type of inflamation that resolved.

Have had another scan since then and still clear. That is why they wait and see. But I understand the feelings you are having. I panicked thinking since my cancer had been stage 4, I needed to start treatment right away. I now understand the reason behind “wait for next scan.”

I pray yours will be the same as mine and disappear. Still doing three month scans. My next is in Feb.

All the best!

Judy

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I am hoping for both of us

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Katherine, sorry to hear your going through this. All of us will be praying for you, as we know, all to well what your feeling right now. I have stage 4 carcinoid cancer. I had to have my scan and treatment pushed back due to emergency surgery to remove 75% of my colon. So now the anxiety begins, next scan in Jan,

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Thanks for the update, Donna. Holding you in my prayers.

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Please let me know how you are doing

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Katherine so sorry to hear this news. I hope the test results will be stable !

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I can truly understand why you would be peeved. As Survivors of Cancer especially when it is caught early we are continually told that early detection is very important. Here you have a small nodule or lesion and wonder how the Medical Community can just sit on it until it becomes bigger. It has already grown 5 mm in 11 months. Why can't it be taken out at this size? Couldn't radiation be done at this point. I am not sure but I would be peeved too.

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Everyone says it has to be at least 1 cm in order to biopsy, or do pet scan.

So once it grows 3 more mm, it will be at 1 cm.

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Hi..I also didn't at first ask for copies of my scans. Now I do. We have to be our own advocates. I also have learned. Doctors are people with lots of patients..we have to fight sometime to be #1. I will pray for you. Keep fighting to be #1 in your eyes. Hang in there.

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I'm so sorry to hear this and the first thing came to my mind...Change Oncologists, I want to know everything concerning my life and that lets me decide what and where I want to go with the new info, nobody has the right to keep anything from you, it's your body...go get another opinion on the 7mm node, its small, under 1 cm...you need to know NOW not in Jan when it has the oppertunity to grow, we're talking sclc which can be aggressive, call cancer centers of America, renoun dr`s with re; lungs etc. just sayin

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Everyone says it has to be at least 1 cm to do anything with it.

I do trust my current oncologist, but I also know I do have other options

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I had a similar experience where a 2 mm nodule was not noted until the next scan showed it to be larger. It was too small in the beginning to be noted until they backtracked. I don't think your oncologist was holding back any information about the previous scan, the nodule was just too small to be seen unless they were looking in that particular spot for it. Having copies of your scan results and a picture of the nodule is definitely a good idea. I get the radiology readings on My Chart and then my oncologist prints off a copy of the actual scan showing the lesion. I, too am in a holding pattern. It's nerve wracking to wait, but doing a needle biopsy on a very small nodule is very risky depending on its location.

If it would ease your mind, a second opinion is always an option. As always, the final decisions are in your hands. This is a bumpy journey we're on and the right path is not always clear. I hope you find the information you need.

Jean

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I did check the printed report from January scan, no mention of the nodule at all. The report said it was clear, do that's what my Dr was going by. I do trust him, but we will see what happens when I see him next month.

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Katherine, if you are interested in a second opinion, or finding an National Cancer Institute designated cancer center, please go to: cancer.gov/about-cancer/man...

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Thank you, I may check it out. For now I plan to give my current oncologist a chance, and I know I also have Roswell, and there is a cancer center in Rochester.

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I follow my on line chart which allows me to read my test results. The facility should offer it as well. I always read my results after talking to the doctor and review blood work when it is taken in advance of the appointment.

I hope you can get an answer from your doctor soon. Not knowing anything is torture.

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I see him mid January

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Katherine, mine came back at 5 yrs, have had 2 surgeries, chemo and rads. You got this!. 7mm is quite small and can't be biopsied until 1cm. Many nodudles are nothing and clear up on their own. I have had a few. Wishing you the best!

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I am hoping it goes away on its own. Thanks for the words of encouragement.

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Also, go to a major cancer center!! Worring changes nothing, it only steals your joy of today. It's not the years in your life that matter, it's the life in your years! Take care

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I am not going to let it steal my joy. I went to a major cancer center after the first diagnosis, I went to Roswell. I got good care, but I was just a number. I now go to the Lipson Cancer Institute, it is much closer to home and I trust them. I can also go to the Wilmot Cancer Institute if I feel the need for another opinion.

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KatherineK, I understand. I got a second and a third and 4th opinion. I personally went went with the second, I was most comfortable there. You are so right, you have to feel you can trust them, very important..

Sometimes they may go a little over 1cm, as different machines and just the angle may vary. If it's back, you WILL have the strenght to battle. Get tgat second opinion for peace of mind. Don't ever give up. Im happy to read your shoulder surgery went well.

My best to you...

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Patches1, I agree, you gotta have confidence in your oncologist. When I first switched to Lipson I was concerned that my cancer had returned. He ordered a ct scan and called me personally to tell me it was clear because he knew I was worried. He told me in January my scan was clear because there was nothing in the report about the 2 mm nodule.

I will never give up. If it is back, I will fight with all I've got. My husband still needs me, my children still need me. I am nowhere near done with this life.

I hope you are doing well. Thank you for taking the time to talk to me.

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My scans are this thursday the 21st, im back on every two months.

Lung fibrosis is taking over whats left of right lung. I have only 25% function and it's agressive. But im doing well considering. No oxygen, yet, so I feel blessed. Take care of you! Keep us posted

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Patches1, I am so sorry that you are going through this. Keep that positive attitude. Hope scan is good today. Please keep us posted.

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I will. Thank you, waiting for my turn now?.oh boy!

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Thinking of you.

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Well, need PET scan and mutation testing. New nodule on spine. Was not there 2 months ago. It is what it is....Merry Christmas everyone and a great 2018!! Hugs to all

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So sorry to hear your news, Patches. Please let us know what is happening going forward. Merry Christmas to you as well! And hugs.

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