Nodule That Has Spiculated - 1269938

franb
Posts:8

I've had lung cancer for almost 4 years. I never smoked. I am female and currently taking Tarceva. During those 4years when I was Stage 3B I went in to remission while taking Tarceva and stayed in remission for only one year. May of 2014 cancer reared its ugly head and progressed to my right lung. Last week I had a CT Scan. One part of it worries me because it said that the ground glass nodule on the right upper lobe has not changed in size but has in appearance. It is now spiculated. I am still taking Tarceva using 75 and 100 mg on alternate days.

I don't know what spiculated means and I am ver scared. Has any one else experienced this type nodule. It's only between 3-4cm big.

I forgot to mention that I am new to your forum.

Fran

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Reply # - May 24, 2015, 09:10 PM

JimC
Posts: 2753

Hi Fran,

Welcome to GRACE. It's good to hear that Tarceva has been working for you pretty well for the past four years. The term "spiculated" really just refers to the appearance of the edges of the nodule, and tend to indicate the presence of cancer. Since your nodule was already assumed to be cancer, its change in appearance may not be significant, especially since it has not grown. I'm sure your oncologist will want to keep a close eye on it, and take action if it begins to grow.

JimC
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Reply # - May 25, 2015, 09:36 AM

franb
Posts: 8

Hi Jim,
Thank you so much for your quick response. You are correct to say that the nodule in question is cancer. I just worry so much that the fear is so over whelming. I will be seeing a therapist the first week od June. I need to learn how to cope with having cancer. Even after 4 years I still live with fear. Again, thank you for explanation. It cleared up some concerns I am having. Have a nice day.
Fran

Reply # - May 25, 2015, 11:44 AM

JimC
Posts: 2753

Hi Fran,

Many of us here feel that the uncertainty is one of the most difficult aspects of a cancer diagnosis, so I understand exactly how you feel. In fact the worry which precedes follow-up scans has its own name - scanxiety. You can read about dealing with the anxiety here:

http://cancergrace.org/coping-with-cancer/2008/05/27/scanxiety/

I hope your meeting goes well, and remember we are just a few clicks away.

JimC
Forum moderator

Reply # - May 25, 2015, 02:15 PM

franb
Posts: 8

Thank you Jim for the link about "scanxiety". I read the article and thought it was talking about me in particular :)

It's a tough day today because I keep ruminating about what my onc is going to say to me tomorrow. And of course I am thinking of the worse. All I want to do is just sleep. Matter of fact the depression has been so heavy that I lay in bed most of the day. It's like my safe place. I am hoping therapy will help me with the depression. I am on medication too. I have been a worry type person all my life. And getting cancer has sent me in a tailspin. Believe it or no not in the almost 4 years dealing with cancer I have had some very good moments. But the last two months haven't been good to me. It all started when I got neuropathy. I am not diabetic. The podiatrist is calling it idiopathic neuropathy because we don't know the source. We are thinking that Tarceva may be causing it. The neuropathy has gotten a little better. I am taking Vitamin B6, 100mg ordered by my onc.

I hope I'm not being a pest writing so much. But it really helps to talk to someone who really understands. My husband is very patient with me and doesn't force me to do things if I am not up to it. He is a very good caregiver and husband. I just want to be a better wife for him. Again, thank you for you responses and kindness.

Fran

Reply # - May 25, 2015, 04:19 PM

JimC
Posts: 2753

Hi Fran,

You're not being a pest at all; everyone who deals with this has similar feelings and fears. From my experience as a caregiver for my wife Liz, I know one thing for certain: your husband (who sounds like a wonderful man) is not looking for you to be a "better wife". He understands what you are facing and wants to help you in any way possible because he loves you. When he married you, he knew that there might be times when you really needed to lean on him for support, just as he might need that support from you. And where love is involved there isn't a "ledger book" to keep track of who helped whom and how much, such that it all balances out. Right now you need his help and understanding and all that matters to him is to be there for you. I know this not just from my own life, but from the experiences of many GRACE members over the seven years I have been frequenting this site.

My best to you and your husband,

JimC
Forum moderator

Reply # - May 25, 2015, 07:06 PM

franb
Posts: 8

Hi Jim,
Thank you for such an inspiring response. When I get the chance tomorrow after I see my onc I will let you know how the visit went.

Fran

Reply # - May 26, 2015, 05:22 PM

franb
Posts: 8

Hi Jim,
It's been a long day especially making calls, sending emails, and grocery shopping.

In a nut shell the appointment went well today. My onc said everything is stable and she used the words partial remission. Now all I need to do is turn on the switch in my brain and start being more positive and not negative. You think after almost 4 years I would be in a more positive mode. But I am working on it. I am just a worrier.

The issue in question concerning the spiculated nodule was written in a way that my onc went to a radiologist that she trusts 100%. She commented that the radiologist wrote things in such a way to cover himself and I understand that concern. The radiologist that my onc conferred with said that its most likely not a progression of cancer due that the size did not change but inflammation.

Talking with my onc she does not at this time know if the inflammation is viral and she knows that I've been coughing just a little or if Tarceva is causing the inflammation (I hope not).

Next step is wait it out and get scanned in 3 months to see if the inflammation has gone away. If not she is going to put me on a Tarceva vacation and see how that goes. In the meantime, if my cough gets worse and/or my phlegm looks to show an infection to call her. She will give me antibiotics but she felt and I do too that I don't need antibiotics now. If the inflamation clears up after being on a Tarceva vacation I will go back on Tarceva at a lower dose.

For now I am to remain on Tarceva until my next scan. I hope I was clear in my explanation. We talked a lot but it was more about the ands, ifs, and buts.

Fran

Reply # - May 26, 2015, 07:47 PM

franb
Posts: 8

Jim,
It's me again. I made a big mistake and now I am worried. I looked on the internet about Tarceva inflammation. And all I saw was something called Interstitial lung disease. There is nothing in the report that mentions this disease. And my onc did not mention it either. I know for sure that if this was the case for me she would have discussed. However. When I continued to read about it the article said it can be fatal. Now this really scared me.

So if my inflamation is not viral and that Tarceva could be causing it to me it means I may have interstitial lung disease. I know my onc would have said something. Please do not tell me to call her because she will feel I am questioning her professionalism. Am I catastrophising.

Gosh with all the good news I got today I had to go and try to figure out the inflamation. I will try very hard not to pester you with things like this. I am just exhausted.

Fran

Reply # - May 26, 2015, 08:53 PM

JimC
Posts: 2753

Hi Fran,

Just wanted to say that ILD presents with very serious symptoms rather than just showing up on a scan. Very unlikely from what you describe. On the other hand I don't think you should ever hesitate to bring up a concern with your doctor.

JimC
Forum moderator

Reply # - May 26, 2015, 09:05 PM

catdander
Posts:

Dr. West has said this about ISD and tarceva, "I haven’t seen enough ILD to say much here, though I agree it’s absolutely possible to have it come on quickly. If there’s any significant chance of ILD, the typical recommended course of action is to discontinue Tarceva (erlotinib) unless or until ILD is ruled out." http://cancergrace.org/topic/can-tarceva-induced-ild-present-in-as-litt…

And from Dr. Sanborn, "I would generally concur with Dr. West, however, going along with the classic medical teaching that "any drug can cause any problem in any person at any time", I had a patient with pathologically proven ILD develop 8 months into his therapy with Tarceva. Just one, but it definitely left an impression. I counsel my patients that if they are developing symptoms of increased cough or shortness or breath at any point they need to call me. Most of the time this will turn out to be a cold, bronchitis, asthma, pneumonia, or other problem, but I don't want to miss anything." http://cancergrace.org/forums/index.php?topic=8358.0

Also inflammation from ILD is usually diffuse and not in just a small area. You should never feel unable to call your oncologist about worries and unanswered questions. It's an absolute necessity for a self advocate to feel she can contact her oncology team whenever needed.

Keep us posted and best of luck,
Janine

Reply # - May 26, 2015, 09:06 PM

franb
Posts: 8

Hi Jim,
Thank you for your response. About bringing things up to my doctor is very important. I guess I felt I was just there today and feel embarrassed to say anything. But I will not hesitate to ask her questions about any of my concerns.

Have a good week. :)

Fran

Reply # - May 26, 2015, 09:14 PM

franb
Posts: 8

Hi Janine,
Thank you so much for your response and further explanation of ILD. My onc did discuss with me that if my cough increases and have breathing issues to call her. Oh and thank you for the links too. I will keep you posted. :)

Have a nice week. Fran

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