Free to Breathe

C T Scan results

The results were not good. There was small, but continued growth in the left lung tumor and new growth in a previously stable nodule in the right lung. After reviewing all the possibilities for treatment and the very slow progression of the tumors, my oncologist and I decided on a watch and wait plan. One tumor is located very close to the aorta which makes a needle biopsy very dangerous. The other is in the lung on the same side as the breast cancer that was surgically removed three months prior to the lung surgery and could possibly be a metastasis from that, a metastasis of the lung tumor or a different tumor entirely, so even a liquid biopsy would be inconclusive. Even a needle biopsy on the right lung would not give a complete picture of what is going on. I'm between a rock and a hard place.

My oncologist feels that in view of the previous tumor having the EGFR mutation, Tarceva would be a good option in the future. We discussed the affordability issue and he felt that could be dealt with. Now I wait. This seems to be the best option at this time. At least I have four months of relative comfort to enjoy before facing the side effects of Tarceva or any other treatment if that is what is decided after the next scan.

Wish me luck.

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Oh Jean, I am sorry! All that uncertainty, you must feel frustrated (at the least). Please keep us updated. Holding you in my thoughts.

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Will be thinking of you Jean! I hope you can take strength from knowing that others are rooting for you. This forum is a great place for that.

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Thank you Peggy. With all the love and wisdom in this community, how can I help but do well.

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Well, I can't disagree with you there! These people are something wonderful!!! You included:)

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God bless you Jean. Prayers and positive thoughts your way!

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Watching and waiting can sometimes be harder than knowing. Stay strong in knowing there are options. Loving life, even when it is uncertain is strong medicine. Sending you love.

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Thank you.

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Jean, I am so sorry for this turn of events. Praying that there is no growth and that things stabilize for you. You have some time to enjoy before making some possibly hard decisions. Enjoy every moment possible! You are so good at giving advice, I hope you follow your own.

Lauri-Anne

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Thank you Lauri-Anne. Will try to follow my advice. You have shared much wisdom which is so appreciated.

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Will keep you in my thoughts and prayers.

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So sorry about your scan. keeping you in our thoughts and prayers.

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Hang in there, Jean! Waiting is the hardest part. In June last year I had 4 new nodules show up. I had to wait another two months before a repeat scan. Fortunately, when I finally had that scan, my nodules disappeared. Have another scan next week. Always a little anxious whenever these are scheduled. Praying after your wait, there is a clear picture of what you need to do. By the way when my first nodule appeared couldn’t do needle biopsy because of same problem you have. Went ahead and did a surgical biopsy and that determined cancer and stage. Just so you know there is that option when a needle biopsy too risky.

Praying for the best outcome for you.

Judy

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Thank you Judy. Yes, the waiting is difficult. Just part of this journey.

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Jean my thoughts are with you.

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I am so sorry. Keep up your positive attitude and continue to explore different treatment options.

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Jean, sorry that your results weren't as good as we still hopes. The situation with the right nodule is a puzzle - I wonder why a tissue biopsy would be inconclusive.

By the time you would be starting to use targeted therapy, Tagrisso may be approved for first line use. Pro: very few side effects for most people. Con: even more expensive than Tarceva. I'm sorry that apparently your insurance would leave you with a large co-pay.

Sending you a big virtual hug and glad you are looking at enjoying life for the next four months.

Anita

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Thank you for your kind words Anita.

The tissue biopsy to the right nodule would tell us what that one is, but still leaves us with the puzzle of what is on the left. I think the doc wants to optimize treatment with the least number of side effects. All options will be reopened in 4 months and I might request a liquid biopsy as well as a needle biopsy. Meanwhile I'll enjoy these relatively comfortable months.

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Sorry to hear your news -- sending thoughts and prayers! I realize a traditional biopsy is not suitable, but I am confused as to why a blood biopsy should not work out?

I have read more and more about them lately and think it's a wonderful option for those who for one reason or another can not have a surgical biopsy.

Wishing you the best -- Take care ...

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Thank you for your kind wishes. The way I understand it, the blood biopsy will pick up on mutations, but there is no way to know which tumor might have the mutation. I think my oncologist wants to optimize my treatment with minimal side effects. Depending on the results of the next scan in 4 months, I might request both a wet biopsy and a needle biopsy on the right, if it is feasible, to determine what I'm dealing with before starting any treatment. The former tumor in the left lung had the EGFR mutation. I'm anticipating continued growth. Fortunately, the rate of growth has been extremely slow.

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Okay...now I understand better, thank you for sharing. I never had any mutations (at least none for targeted therapies), so having a targeted treatment has never been a option for me. My cancer is currently stable (one small tumor still remains, but it is quite tiny and has not changed in well over a year. I'm Stage IV and had a brain met and a Pulmonary Embolism at diagnosis, but have come along way in the last couple of years and those have both been successfully treated. Currently, I'm being monitored every three-four months with Scans and Labs. I have already had Chemo, Radiation and Immunotherapy - so it's a One Day at Time thing for me, as well. But, I admit it's hard to "watch and wait" and be "off treatment" at times? I had to be taken off the Opdivo (Immunotherpay) due to recurrent low grade pneumonitis. Luckily up until then, it had done a great job and is how I got to where I am today. I have been "Stable" with now new growth or changes since they stopped treatment 19 months ago. I'm so thankful to be stable, but there are days that are worrisome? Knowing you have Stage IV Cancer and your are not currently "treating it"? Something that we never imagined would ever happen with I was diagnosed in 2015!

Best wishes to you....prayers for stability...

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How wonderful that your treatment has lead to your cancer is stable. I truly hope you remain that way for a long time.

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Thank you ! This is my hope for us all -- and I will always hope the longer we can remain Stable or NED then we can HOPE that will give us the time to find our CURE! Blessing to you!

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You really have shared your valuable experience with us. Do you monitor your cancer marker CEA all along?

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Thank you. We do monitor my CEA, unfortunately it's not a reliable marker for me, and has always stayed in the normal range, even when I had significant progression. We also monitor my LDH and for me that seems to be a better marker, but can be affected by other things, such as inflammation. In my case it was very high at my diagnosis and spiked again when I had the progression. My Oncologist runs both for me.

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Thx.Wish you the best of luck !

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Very sorry for this turn of events. Please know that in non-EGFR patients it’s been found that about 10% can be helped with Tarceva. There are trials that include both Tarceva and a traditional chemo drug. If you say the word I’ll find it for you.

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Thanks Denzie. Since my original lung tumor was EGFR positive, I think the oncologist is thinking that the tumor in the same lung is too. He also mentioned that Tarceva is effective for non EGFR tumors, but at 20%. Since the tumors are still very small, 10mm and 13mm, and growing 1 - 2 mm in 4 months up to now, that waiting for the next scan is the least of all evils. I think the oncologist is trying to minimize damage and discomfort for this 76 year old woman and maximize the outcome.

A lot can happen in 4 months, so I will probably call on your wisdom closer to that time.

Again, thank you for your assistance.

Jean

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good luck and sorry to hear that i will be thinking of you. Let us know what there going to do. love susiejo

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Best of luck!

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Do all u can in that 4 months trying to keep ur worrying to a mimimal

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Thanks Pinecone112. It's not too hard to stay occupied during the day. It is the middle of the night that's worst.

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Hang in there Jean

We are all here with you

It's a wait and see game. That's tough

Keep us up on your progress.

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Thank you JRuthl1946.

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