Help needed STAT: Lung nodules and next steps

Portal Forums Lung/Thoracic Cancer Screening / Prevention Help needed STAT: Lung nodules and next steps

This topic contains 15 replies, has 3 voices, and was last updated by catdander forum moderator catdander forum moderator 2 weeks, 4 days ago.

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September 23, 2017 at 12:58 pm  #1293164    

cbwriter

Hello, everyone. I have been intermittently reading these forums for about a year and this is my first time posting. My spouse is a 61-year old former smoker (quit 25 years ago). We need your help.

In April of 2016, my spouse was diagnosed with one single kidney stone (she had it for years and it moved and caused pain, had to be removed). Long story short, it was a very complicated process, she had an infection, was in the hospital over a week, and during that time, they took a pre-op standard chest xray, which showed a nodule or two. During her hospital stay for the kidney stone operation, she was around a patient who had a horrible respiratory condition that sounded terrible. Weeks later she got sick with what was a bronchitis/respiratory infection. I don’t know if any of this is related but sharing all this.

After her kidney stone crisis, low-dose CT scan of the chest was completed and it showed multiple nodules in both lungs. After seeing a pulmonologist, family doctor, and thoracic surgeon, it was decided to have VATS. This was done by a skilled surgeon locally, and she spent 5 days in the hospital.

Diagnosis was made as follows and the tissue was sent to Johns Hopkins for evaluation:

• Submitted lung wedge biopsies of right upper lobe, superior segment of right lower lobe, and inferior segment of right lower lobe.
• Lung wedge biopsies showing multiple foci of alveolar hyperplasia.
• Foci of mild interstitial fibrosis.
• No granuloma or obvious malignancy seen in completely sampled tissue.

It was ruled she has atypical adenonmatous hyperplasia. He calls this a pre-cancer.

She has since seen an oncologist at Penn Medicine, he is well knowledged and even calls his patients with follow up questions you need answered.

He has her going for ct scans every three months.

Most upsetting to me: He told us initially back in 09/16 to prepare for a “spectrum of badness” and that these are the most controversial of all types. They call it a precancer based on th

September 23, 2017 at 1:00 pm  #1293165    

cbwriter

They call it a precancer based on the size of her nodules.

All scans have been stable, and the oncologist had been watching a speculated lesion in the left lower lobe which has not changed at all.

He tells us that 5 mm and up nodules are called adenocarcinoma in situ. He says at any moment one or more can turn bad and that’s why every 3 months a CT scan.

Fast forward to now, 9/22/17

She had a chest CT scan this week and there was one change. She has many many nodules, but one of them in the medial right upper lobe changed slightly in shape and very slight in size, from about 11.1 mm to 12.7 mm, They call is “slight progression.” The oncologist said he would normally just watch it but it changed slight in shape to oval.

Due to small size and deep location it is very hard to reach with a needle biopsy. The Gi team and the gastrointestinal team both said they cant do it. He has ordered a PET scan, her first one. This takes place next week.

Based on that and talking to his associates at the cancer center, they will decide what to do.

I asked a ton of questions and he says if the nodule is “hot” on PET scan and is changing in size and shape, he wants to treat it as a PRESUMPTIVE early cancer – and that means radiation with cyberknife.

We are devastated here. He says radiation

September 23, 2017 at 1:01 pm  #1293166    

cbwriter

is most likely but a surgeon would be consulted.

He says “the radiation burden is not great and each and every test in this case has a distinct purpose/goal and we think that’s what matters most in ordering and using radiology tests to make decisions.”

We asked if this is the protocol anytime there is a nodule change and he says, “Yes, this is exactly the drill that we go through if a nodule appears, grows, changes. It is the express goal of scans to find these and treat then when they are small.”

We also had genetic testing at the University of Penn and everything was fine. She had a colonoscopy. It was fine. Yearly mammograms are fine. Routine blood work is fine. We did grow up in an area where asbestos was in the schools. But we have the diagnosis we do.

Help Needed With

Is this the “norm” to potentially do radiation on any nodule that changes and not be able to biopsy it? (he said it’s too small and most other specialists wont try due to its small size and location). Oncologist says just watching on ct scans is not what to do with this one.

Because she has a ton of lesions (dozens), is there anything we can do to stop the progression, someone else to see to help?

Has anyone on this forum been through a similar situation?

We both agree we don’t want her having a chest surgery like VATS every year, or whenever something is slightly off like this, but that is a fear. How much is too much for a person?

My anxiety is off the charts by the way and I feel pretty lousy as a spouse because I don’t have answers.

No family history of lung cancer. She has arthritis and fibromyalgia for years.

Any help or direction is appreciated. Many blessings and gratitude to all who read this and respond. I am grateful.

Kindly,

September 23, 2017 at 4:10 pm  #1293170    
JimC Forum Moderator
JimC Forum Moderator

HI cbwriter,

Welcome (officially at least, since you haven’t previously posted) to GRACE. I am sorry to hear of your spouse’s scan findings. It’s always very upsetting, especially when there is so much uncertainty involved.

The first issue is the change noted from previous scans to the current CT. A 1.5 mm increase in size is very small, well within the variance found between any two scans, which can arise from the use of different scanners, varying body position or the way the CT slices “cut”. A nodule of over one centimeter can often be biopsied, but it may be the location of the nodule that makes it difficult in your spouse’s case.

From your description, whatever this is has not grown much over the course of the various scans. In looking at our site, you may have read about adenocarcinoma in situ, formerly (and often still) referred to as BAC. It can be very slow-growing, to the point that it is not at all life-threatening, with a risk of actually over-treating the disease. Dr. West has written this post in which he describes his algorithm for treating BAC and other slow-growing lung cancers.

Patients and caregivers often express a very understandable desire to remove any vestige of cancer that appears, but as Dr. West describes, those interventions do not come without cost, and if a cancer is not going to cause a problem for a long time, if ever, why put a patient through treatment that won’t really provide benefit?

It would probably be helpful to consult a local expert in BAC (most likely found at a teaching hospital affiliated with a medical school), to get a second opinion as to a course of action.

We’ll be sending positive energy for good results from the PET scan.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 23, 2017 at 9:08 pm  #1293172    

cbwriter

Jim, Thanks for the super fast response. We are currently going to Abramson Cancer Center in Pennsylvania.

I read with intense interest the article that you linked to from Dr. West and I thank you. We are going ahead with the PET scan and the second opinion is likely. The oncologist we are seeing now wants to aggressively treat each nodule if it changes in size or shape. This one is round/oval.

We both appreciate this so much. Is there a reason why there isn’t much activity in some of the posts and have any of Dr West’s amazing research been updated to more recent or is 2014 the most recent data?

Many thanks.

September 24, 2017 at 7:45 am  #1293174    
JimC Forum Moderator
JimC Forum Moderator

Hi cbwriter,

I’m glad that you are finding the content here helpful. For the most part, each thread receives some replies shortly after the initial post, then new posts come along after that.

Although new systemic treatments have surfaced since Dr. West stated his algorithm, the course of action he recommends remain valid. Slow-growing cancers remain at risk of over-treatment.

With the help of your current medical team and perhaps a second opinion, I hope that you can develop a treatment plan (which may include further watchful waiting) with which you and your spouse will feel comfortable and confident.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 24, 2017 at 11:15 am  #1293179    

cbwriter

Thanks JimC, for replying. We are getting a second opinion. If something is dubbed pre-cancer, and we dont know for sure without biopsy, that is my concern.

When you shared, “those interventions do not come without cost, and if a cancer is not going to cause a problem for a long time, if ever, why put a patient through treatment that won’t really provide benefit?”

When we posed that question to the oncologist at present, he says he wants to treat each change of nodule aggressively. I am very concerned for that.

Any further studies or folks living with nodules throughout their adult life that dont cause problems, Id love to be directed.

Have a wonderful day and thank you~

September 24, 2017 at 11:48 am  #1293180    
catdander forum moderator
catdander forum moderator

Hi cbwriter,

Welcome to Grace (officially, as Jim said :) ). I’m so sorry you and she have been going through this. Waiting is often the hardest part, as Tom Petty suggests.

Activity on Grace fluctuates quite a bit. Since our focus is first informative many members post only when they have questions others like Jim and me stick around to share our experiences and resources. Everyone is encouraged to return often to share and offer hope.

As you have read sometimes lung cancer is slow growing, most often this is BAC which is a subtype of adenocarcinoma nsclc. It is treated like adeno nsclc so any new information on the subject would be found under the subject of adeno nsclc. Dr. West is one of the leading specialists in the care and treatment of BAC and sees more cases than most if not any one else. Since lung cancer is most often aggressive many medical oncologists who treat many types of cancer aren’t familiar with treating any type of lung cancer as a very indolent cancer. There’s no new or different thought about treating indolent BAC as lightly as possible.

Keeping you and yours in my thoughts,
Janine

September 24, 2017 at 2:20 pm  #1293181    

cbwriter

Thanks for replying to me. I will keep you all posted and thanks for the prayers and positivity. Does Dr. West answer directly? You all are very very kind. Thanks Jim, and thanks Janine.

September 25, 2017 at 8:42 am  #1293184    
catdander forum moderator
catdander forum moderator

cbwriter,

Dr. West does comment directly on the threads when there’s a question that’s unique to the forums and not too individual. For several years he and other oncologists responded daily on most threads. In doing so they really covered most of the general topics, creating a mass of information that Jim and i are able to point to when there are questions. The time they allotted to Grace has now been taken over by new endeavors in cancer management so it’s not that they are no longer interested in cancer education. Among other extra curriculars Dr. West co-moderates an every other Thursday twitter chat on #LCSM (lung cancer social media) that’s always informative. Our faculty specialists keep us up to date on what’s new in cancer care by writing pieces and making video in our focused cancer section. If you have a specific question or something your not connecting to your spouses situation please try to vocalize it so Jim or I can try to help you make the connection between the resources and her case.

I don’t think your questions have been too individual but they have been covered quite a bit. Multi focal malignant nodules in both lungs represent stage IV nsclc. Think of anticancer treatment as a marathon as opposed to a sprint. This sentiment is held by every oncologist who’s contributed to Grace. Make all treatment options last as long as possible. For someone with an indolent BAC that might mean chemotherapy for a 4 cycle course then waiting until progression becomes clinically relevant to treat again. Radiation is reserved for symptom management such as when a nodule is pressing or blocking a structure such as esophagus or painful bone mets (which is unusual to BAC, BAC usually stays in the lungs).

I hope this helps,
Janine

September 27, 2017 at 6:01 am  #1293191    

cbwriter

Thanks for replying, Janine. I am going to be off the forums for a bit, as I am facing something completely medically unrelated to this. However, I am a bit confused by the reply.

She does not have malignant nodules – that has not been the diagnosis. She had VATS and AAH/ACIS diagnosed based on size, alone, the biggest nodule being 12.7 mm.

One of the nurse practitioners at the second opinion cancer center we are going to this week shared it can even be where the CT sliced through and not growth at all! I am so confused.

Further, if Radiation is reserved for symptom management such as when a nodule is pressing or blocking a structure such as esophagus or painful bone mets (which is unusual to BAC, BAC usually stays in the lungs)… why in the heck is her oncologist recommending that if her PET scan lights up for this 2 mm change?

She has never been “staged” and does go to a premiere Cancer Center with one of the top oncologists in the country, but this seems really confusing and now I question what he is saying.

I read so much on what Dr. West has said and thanks for letting me know about the #LCSM Twitter chat!

September 27, 2017 at 7:06 am  #1293192    
JimC Forum Moderator
JimC Forum Moderator

cbwriter,

I’m sorry that the information has been a bit confusing. I will try to make it clearer.

In lung cancer, when there are nodules in both lungs that is staged as Stage IV. In your spouse’s case, there has not been an actual diagnosis of lung cancer, so as you say there has been no staging. The point Janine was making is that if there is cancer activity in both lungs, local treatment such as radiation or surgery is not usually favored, because it puts the patient through a risky procedure but doesn’t address the rest of the cancer. So radiating the largest nodule without adding systemic therapy (e.g., chemotherapy) does not address the entire picture. In the stage IV setting, local therapy is usually only pursued for the symptom palliation purposes to which Janine referred.

As far as what I and the second opinion nurse stated regarding the apparent growth on the scan, a CT is a series of many images taken at very small intervals. The “cut” between one image and the next can fall in a different place with each scan, which can affect the apparent size of a nodule and make it look larger on one scan than another. This is only a significant issue when the difference is small, as with this possibly slightly enlarged nodule, since the change noted is only a millimeter and a half.

Situations such as this are always subject to interpretation and the “art” of oncology, which provides a good reason to obtain a second opinion. I would ask the new doctor questions based on what we have discussed here, in order to get a better understanding of the options available, and possible confirmation of the suggested therapy.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 27, 2017 at 7:32 am  #1293193    

cbwriter

Thanks JimC, I appreciate it.

I cannot believe that in 2017, the way to handle this is every 3 months never knowing what the next surgery or procedure is, especially if we cannot confirm the growth for sure.

The risks to biopsy by needle are too great we are told but we will be getting second opinion right after PET.

Many kind thanks to you both.

October 2, 2017 at 7:16 am  #1293210    

cbwriter

Janine and JimC,

My wife had her second opinion appointment today at a top-rated cancer center in the US on Friday and also to review results of her 09/28 PET Scan.

I wanted to give you both an update since you have been so kind to take the time to answer me here.

The PET Scan showed two areas that are hot, and one is just slightly hot. SUV on the lesion that was in question is 4.9 SUV.

Rest of the scan of the body stuff was great. Nothing showing with regards to lymph nodes.

She must have a FNA biopsy of the one. It is 12.7 mm and near a rib, but they need to do this.

The oncologist for second opinion feels this is either adenocarcinoma lesion, precancer to carcinoma, or a carcinoid tumorlet perhaps.

She said it is something but not sure what so that’s why biopsy.

Every 3 to 4 months for CT scans going forward.

SBRT radiation therapy on this nodule for 5 treatments is expected with a followup visit for biopsy results on 10/20.

She is switching her care to this place. Thank God. She feels much better at this facility than where she was. My other concern is the second hypermetabolic lesion that was found on the 9/28 PET Scan. They are only watching it because small, the shape is not worrisome, and it didn’t light up “much” on PET scan.

So that’s where things are right now.

I am very nervous but glad she found a place with what feels and seems like more patient-centric and focused, caring “care.”

Thank you so much for being there and offering your valuable input for me.

Most Kindly,
Carol

October 2, 2017 at 7:24 am  #1293211    
JimC Forum Moderator
JimC Forum Moderator

Hi Carol,

I’m very encouraged to hear that your wife’s second opinion consultation has provided you with comfort and confidence. It’s important to feel that you are on the same page with the medical team, and that you can communicate well with them.

Good luck to both of you moving forward, and please let us know if you have any further questions.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

October 3, 2017 at 11:38 am  #1293212    
catdander forum moderator
catdander forum moderator

Hi Carol,

Thanks for letting us know about the 2nd opinion. I’m sorry for the confusing info and glad Jim’s here to sort out my thoughts. Having an onc that fits your needs is so vary important and so happy your wife had the courage to switch. I know she and you will both feel better for it. I hope answers come clearly and tumors move slowly or not at all.

Keep us posted and all the best to you both,
Janine

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