second opinion - 1291342

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deedee1
second opinion - 1291342

I had RLL lobectomy in July 2016. New CT shows LLL 2.5cm growth. Pathology report states Mucinous adenocarcinoma, at least in situ. tumor displays lepidic growth as well as mucinous differentation. ab/pas stain confirms the presence of intracellular and extracellular mucin (food external control). No are areas of invasasion are seen in this limited biopsy.. Oncologist says because of this newest lll mass and bilateral pul nodules that are worrisome for metastatic disease she is recommending no surgery and only offering chemotherapy. Should I seek a second opinion. I go to Kaiser in Roseville, CA. Thank you.

JimC
Hi deedee1,

Hi deedee1,

Welcome to GRACE. I really think that any time you're faced with a significant decision point, a second opinion is a good idea, and preferably at a teaching hospital. In your area, UC Davis would be a good choice. Even if you only receive confirmation that chemo is the best option, you will feel reassured about the choice. In addition, you're likely to gain additional knowledge about your cancer and the treatment choices.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

deedee1
I am definitely getting a

I am definitely getting a second opinion. The hard part for me is that the oncologist has not answered my questions as to if this a very aggressive and I should decide quickly. Very frustrating not to know if this is aggressive and will it infiltrate to my liver, brain etc., rapidly. Thank you for your response to me.

Deidre R Gneri

catdander
Hi Deedee,

Hi Deedee,

I'm sorry you're facing this and hope the 2nd opinion gives you some comfort about treatment options. It's not possible to say how aggressive a cancer is until it's been watched for a while so it would be disingenuous to give you an answer that's just an average of many thousands of people. Each individual'a cancer is unique and until it show's itself you won't know where in the spectrum of possibilities your cancer lies.

Hoping for the best,
Janine

deedee1
Thank you for your response.

Thank you for your response. Does GRACE have any opinions regarding the use of cbd and thc oil? I don't use drugs, alcohol etc, but have friends suggesting this along with chemo. You may not be able to advise or have an opinion but would like to find out about this. I don't like the idea of such high doses of it but I will do whatever it takes conventionally, naturopathically or alternative.

Deidre R Gneri

catdander
The research hasn't given

The research hasn't given much promise but the research also hasn't been done on more than one weak strain of cannabis in Mississippi (I think that's changing). It appears some people respond well to its anti nausea effects and some to pain relief. The potency is often very high so if you decide to try it be sure to start very low and increase. Too much can cause paranoia and other uncomfortable effects. It's not legal where we are so I couldn't give personal experience. Dr. West hasn't shown much excitement over it but Dr. Weiss has given at least one example of a happy lemon bar baker who swore by them. I think if someone isn't getting relief from other methods and has access give it a try. But this is all my opinion.

catdander
The research hasn't been

The research hasn't been promising though the research in the US has been done on one strain of weak cannabis (i think that's changing). Dr. West hasn't expressed much excitement over it while Dr. Weiss has given at least one example of a patient who swore by her cannabis lemon bars. Many people have found beneficial effects for nausea and pain that otherwise weren't managed. Its use isn't legal where we are so I couldn't give a personal experience. My husband did take a pill form of a man made product his onc prescribed that had no comparison to cannabis (I can't remember what it was called). If you're not otherwise managing nausea or pain you could try it but start with a low dose. The strains are usually quite potent and can cause paranoia and other uncomfortable effects if given in too high dose. Too think about other forms of ingestion besides smoking since that can cause worsening lung capacity.

catdander
I'm going to try this one

I'm going to try this one more time, the 3rd, the post keeps vanishing when I hit submit.
Data on research hasn't been promising however research has been conducted on one weak strain (though I think that's changing). Dr. West hasn’t shown much excitement about its use though not entirely discounting it for those who want. Dr. Weiss has given at least one example of a happy camper who made lemon bars with lots of benefit. It’s not legal where we are so I don’t have 1st hand experience I can share. My husband was prescribed a made made version of something akin to cannabis but was no comparison and very expensive. I do remember as a young girl in the 70s I did inhale and noted an anti-nausea effect before I’d ever heard of such a thing so I can certainly understand those who use it for its anti-nausea effects. I understand the strains are much more potent than those of the 70s so if you do try start with a low dose and move up. Not the other way around. I’d find an alternative to smoke, Smoke definitely causes lowered lung capacity. There are my opinions and not those of Grace.

cards7up
Medical marijuana which can

Medical marijuana which can include CBD oil has been used to treat symptoms and side effects. If you haven't already, read the link by Dr. West who is considered a BAC/AIS specialist.
Take care, Judy
http://cancergrace.org/lung/tag/mucinous-bac/

deedee1
Yes I have read Dr. West link

Yes I have read Dr. West link. My oncologist doesn't think I have the mutations but was supposed to send to lab. I have requested a different oncologist as of today. I believe mine is the mucinous so appears that isn't going to allow me to be able to take oral meds. They are recommending the carbo/alimta chemo or at least the previous oncologist did. I am in limbo at this point. I didn't see anything in relation to medical cannabis. I am consulting with a company here in california that only does medical cannabis and no recreational. I am only interested in true medical cannabis. I don't smoke it or vape it, never have and don't intend to. I am only interested in the chemical free CBD/THC capsules. I also use foods that build up my immune system and I am using Essaic tea. I believe in a combination of traditional, herbs and other alternative approaches. Just hoping I get in with the new doctor and get some kind of answers as to where I stand with this disease.

Deidre R Gneri

JimC
Hi Deedee,

Hi Deedee,

Here's the post that Dr. West wrote a couple of years ago, discussing in detail the lack of evidence for medical marijuana and associated products as cancer-fighting agents: http://cancergrace.org/cancer-101/2015/07/12/thc-is-not-anticancer-rx/

It's fairly common to hear from well-meaning friends who have heard about alternative therapies to treat cancer, but unfortunately they usually refer to treatments that haven't been proven effective.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

deedee1
Yes, I have followed only the

Yes, I have followed only the MEDICAL side of cannibas. Unfortunately trials won't happen due to the Federal Government. Leaving it a schedule 1 drug stops a lot of studies or even doctors who do see some benefit from talking about it or studies being done. This post from Dr. West was done in 2015, even since then some changes have happened. But for me, if taking stalks of celery with chemo might help, then I am going to do what I can alternatively along with the traditional as long as they are not contraindicated with each other.

Deidre R Gneri

cards7up
There are trials for

There are trials for cannabinoids as they've been shown to work in the brain for some cancers and epilepsy and other brain diseases. As for lung cancer, I haven't seen any studies or trials that show it does anything other than help with side effects and symptoms. It can help with appetite, insomnia, nausea and even pain in some cases. As long as your treating onc knows exactly what you're using, that's what matters.
Take care, Judy

deedee1
I always have a list of

I always have a list of everything I take and even the foods that I use. Thank you!

Deidre R Gneri

deedee1
So I saw a new Doctor from

So I saw a new Doctor from Kaiser. She stands by the decision of the previous oncologist. It was a very sad appointment. Basically was told that chemo is non curative. I asked her about the new small tumor being in situ and she said it's only because it was to small of a sample to prove invasion. She said that even though the multiple tiny pulmonary nodules are to small to biopsy or pick up on Pet Scan that they have to assume the are all cancer. She didn't agree with using Vitamin D3, garlic or herbal tea I use and was told not recommended while getting treatment. I am still in shock that I have a less than 3 cm tumor that is showing to be in situ and small nodules and they basically say the rest of my life will be all about repeated treatments to keep in where it's at and no chance of curing/eradicating the cancer . I am extremely shocked and devastated. I have been told from the beginning of this last year that this is a slow growing cancer that they felt could be stopped if it reoccurred. I am probably not making any sense today because I am in shock. They have me starting chemo in a couple of weeks. Made me feel I shouldn't waste time. They won't do surgery on the small one that is positive for cancer because they feel the other tiny ones will just keep growing even though the cat scan states "unchanged" from my other cat scan. Do I just go with the program and hope for the best?

Deidre R Gneri

JimC
Hi Deedee,

Hi Deedee,

I'm sorry the appointment was so difficult for you. It's a universal feeling among cancer patients (and their caregivers) to just want the cancer to be gone forever, and surgery seems the best way to accomplish that. But in the case of multifocal disease such as your BAC, continuing to remove sections of lung in an effort to eradicate the disease usually does not work-the disease pops up somewhere else. But although we all would like to see a cure for cancer, one of the goals of cancer research is to find a way to turn it into a disease that can be managed for an indefinite period, much as with diabetes. As Dr. West has said, when asked about the feasibility of another type of local therapy (radiofrequency ablation)::

"I’m sorry to say that for multifocal BAC, RFA represents another completely futile option that we would have no reason to think would be any more appropriate than multiple surgeries. In other words, it’s something to do just for the sake of doing something, but which I suspect will end up being more harmful than probably doing nothing at all if the disease is slow-growing. If the disease is indolent and growing in multiple locations, the leading options are systemic therapy and nothing but observation — ANY other local therapy is simply adding more alternatives driven by either an ill-conceived reflex to treat no matter how poor the rationale for doing so, or just financial motivation of the people who make money by doing interventions that may be profitable but make no sense." - http://cancergrace.org/lung/2013/01/20/mf-bac-algorithm/

[continued]

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

JimC
[continued from previous post

[continued from previous post]

Some BAC patients can live for many years without the disease threatening to shorten their lives. I realize that it is hard to choose to do nothing in the face of a cancer diagnosis, but when there is a chance that the cancer may be indolent, sometimes it is best to watch and wait to find out the pace of the disease. If it is very slow-growing, then it may not need treatment, with all of its attendant risks and side effects. Or if it is growing at a bit faster rate, treating it from time to time may keep it under control for a long time. And of course, the longer the disease is kept under control, the more treatments become available. The pace of cancer research has never moved as quickly as it has in the past few years.

I hope that your cancer can remain under control for a very long time.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

deedee1
Thank you Jim. I think what

Thank you Jim. I think what is hard for me is that they aren't letting me know if this is a fast growing or slower growing. They haven't given me the choice to not do anything vs chemo. I have only been encouraged toward chemotherapy. I don't know what question to ask the doctor I guess is my problem to help me make a good decision in waiting vs. treatment. They are moving things along quickly so I have to decide before then. I also am supposed to get mri of brain to be sure about that also. I have read Dr. West algorithm before and just now again and that was what gave me hope. But I cannot drag an answer out of the doctors as to the aggressiveness vs slow growth watch and see for another short time, perhaps 3 months and do another ct scan and see how it looks. Because I had my right lower lobe removed last year and had a clear CT 6 months after surgery and now in August have this new small tumor, they are indicating that I have already taken the watch and see stance. i don't know if you can help me clear this in my head and with what specific questions to ask but any help and reassurance will be wonderful.

Deidre R Gneri

JimC
Hi Deedee,

Hi Deedee,

I understand your dilemma. It may be that from the doctors' perspective, you have growth of 2.5 cm over the past six months, and that is evidence of rapid enough growth justifying the commencement of treatment. I think I would ask whether there was anything seen on the previous scan which could have grown into the current LLL lesion, and what, in addition to the two lesions you've mentioned, was seen on the initial scan and the subsequent scans. Were there GGOs or other evidence of BAC in either or both lungs, and on which scans? The questions are intended to help determine the pace of growth. If they tell you that the pace is not indolent, that would indicate that treatment may be the right choice.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

deedee1
I am sorry but what are GGO's

I am sorry but what are GGO's? And does indolent mean slow growing? If indolent should I do chemo or wait, I am unclear about the meaning and feel stupid not knowing what is going on with my own body :(

Deidre R Gneri

deedee1
Jim; I looked up the

Jim; I looked up the definitions of GGO. Sorry about the misunderstanding. My tumor that is new in recent CT scan is a 2.3 cm scalloped solid nodule. And also says in the report Multiple subcentimeter pulmonary nodules which are unchanged. These are the nodules.

LUNGS: There are several pulmonary nodules, which
include:
A 2.3 x 1.6 cm scalloped solid nodule of the left lower
lobe (4:43).
A 0.4 cm nodule of the left upper lobe (4:48), not
previously seen.
A 0.4 cm nodule of the right upper lobe (4:50),
unchanged.
A 0.5 cm nodule of the left lower lobe (4:55),
unchanged.
A 0.5 cm nodule at the medial left lower lobe (4:71),
unchanged.
A 0.9 x 0.4 cm nodule along the minor fissure (4:72).unchanged.
A 0.2 cm nodule of the right middle lobe (4:80),
unchanged.
A 0.4 cm nodule of the left lower lobe (4:95),
unchanged.

So I don't see any mention of GGO. So I guess I will ask those questions as you suggested. I have wondered if these small nodules have been there since they told me it was pneumonia and then finally did the CT and biopsy last year on my first tumor on RLL. Thank you so much for your help. I am sure I am driving my doctor crazy with questions but I have a healthy respect for chemotherapy both ways. If i could possibly wait a while I would be thrilled. If not, then so be it.

Deidre R Gneri

deedee1
I asked all of the questions

I asked all of the questions and below are the answers. Still leaves me kind of in limbo but guessing I should go ahead with chemo and see how it goes. They will not removed just the one tumor. They have told me that.

The LLL lesion was new compared to the previous ct scans

3. In previous scans, the first scan that I can clearly see small nodules in Feb 2017. These were thought not to be cancerous at that time given their size and appearance. The most recent scan showed that these are bigger in nature and more in number.

4. Given the size of the nodules, we can not tell if they are GGOs/BAC. We can have lesions on imaging that look most consistent with this but you would need a biopsy to definitively say that is what is being seen on imaging. Given these lesions are so small, we can not biopsy them.

Deidre R Gneri

catdander
Hi deedee,

Hi deedee,

I'm so sorry you're going through this. The statement in my first post still stands, it's not possible to know if a cancer is fast or slow growing until it shows itself to be one or the other. A nodule that goes from nothing to 2.3 cm on a CT in 6 months isn't so slow that you'd hope it doesn't ever need treatment. It might fit into the category of hopefully needing only occasional knock down that Dr. West describes in Jim's post. The only way to know that is to treat then stop (probably after 4-6 cycles) and see what happens.

An important FYI is to know that if the cancer is BAC it's treated like adeno nsclc of which BAC is a subset. The real difference is that treatment might be less aggressive if shown to be slow or slower growing and this is probably an appropriate focus. The longer you can make any one treatment last the longer cancer can be kept at bay.

I hate to add to your confusion (there's just so much to understand and get right) and certainly it's most likely cancer but...has the new 2.3 nodule been biopsied? It's in the lower lobe so most likely reachable by CT guided needle biopsy. That way you can know for sure it's cancer and not something else. Too, if it's a core needle biopsy (as opposed to fine needle aspiration) you would likely have enough tissue to do mutation testing. Often oncologists will assume cancer for those who already have a primary site if the new site is difficult to get to or biopsy is undiagnosable. It happens often that a nodule looks and acts like cancer but further workup show otherwise.

All best,
Janine

deedee1
Yes, there was a biopsy.

Yes, there was a biopsy. Here is the pathology report. It says in situ but oncologist believes it was such a small lesion to biopsy that she isn't totally believing this. They did not have enough tissue from this specimen so have sent specimen from my first surgery when they removed the lobe and are using that tissue because they are showing to be the same kind of cancer per this recent biopsy. This is what they state in the patholgy report. "FINAL PATHOLOGIC DIAGNOSIS
LEFT LUNG, LOWER LOBE, CORE BIOPSY:
- MUCINOUS ADENOCARCINOMA, AT LEAST IN SITU (SEE COMMENT).
Comment
The tumor displays lepidic growth as well as mucinous
differentiation. An AB/PAS stain confirms the presence of
intracellular and extracellular mucin (good external control). No
areas of invasion are seen in this limited biopsy.
Microscopic Description
Microscopic examination was performed and supports the above
diagnoses.
dxw/8/17/2017
Specimen(s) Received"
A:LUNG, NEEDLE BIOPSY - LEFT LOWER LOBE LUNG NODULE"

The oncologist said not enough tissue from this one but are using the old tumor they removed last August 2017. So the fact that this new one is cancer, oncologist has to assume the multiple small nodules scattered in both lungs even thought they are to tiny to biopsy etc are cancer metastasis putting me at stage 4.

Deidre R Gneri

JimC
Hi deedee,

Hi deedee,

I'd agree with Janine that the growth of this one nodule justifies treatment, but as we've both said if you wait and watch after a course of treatment, you may find that the cancer is quite slow-growing, not requiring additional treatment at least for a good bit of time. And though it seems inconsistent with a stage IV diagnosis, with BAC involved there can be very slow growth.

If I understand correctly, tissue from the initial surgery is being sent for mutation testing, and if that uncovers an actionable mutation such as EGFR, then targeted therapy (e.g., Tarceva) would be the leading choice.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

deedee1
thanks for all of the help.

thanks for all of the help. Kaiser is very doom and gloom about my prognosis. Nothing positive has been said so I am praying that the chemo they chose for me is going to help. They chose Carboplatin and Pemetrexed so I am sure they know what's best for my pathology report.

Deidre R Gneri

scohn
Hi Deedee.

Hi Deedee.

Just wanted to send some hope and hugs out to you, with the wish that your treatment goes well and works for a long time. My wife had Carbo/Pemetrexed after she was first diagnosed and it reduced the volume of her tumors by about 85%. We'll have you in our prayers and thoughts for a very successful treatment!

Scohn

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

deedee1
Thank you scohn! I have been

Thank you scohn! I have been so down and frightened as to what is coming. I have tested negative on all the genetic tumor tests except for KRAS which isn't any good. Seems my kind of cancer is not a good one. I am feeling fine, no symptoms and very thankful for that. Just knowing in a couple of weeks I will maybe not be feeling so great due to some hope in a bag of infusion. I am obviously at the anger/overwhelmed stage. DId your wife do well with the side effects? How is she doing? My prayers for everyone who is struggling with any disease. I appreciate hearing from those who have benefited from the chemo combo I will be getting.

Deidre R Gneri

cards7up
I've done this combo twice,

I've done this combo twice, three years apart and now almost 4 years and NED. Stage IIIA adeno dx in July 2010. Had SBRT and carbo/alimta. Then a local recurrence in 2013.Had surgery and carbo/alimta. The first time I did it, I had extreme fatigue. Most people do not get it as extreme as I did. I just rode it out and never tried to keep a schedule. I'd sleep whenever I felt the need. Then the second time, the fatigue was minimal.
I never had any real nausea either time. Take something for constipation on the day of chemo and keep the fluids up all through treatment. Here's a link that might help. Take care, Judy
https://www.whatnext.com/blog/posts/24-survivor-s-tips-to-better-handle-...

scohn
Deedee,

Deedee,

I can only imagine the stress and fear you are going through. I remember the day we heard of my wife's diagnosis in excruciating detail. I hopes it helps to know that others have been through this and will be thinking about you. My wife did really well on the carbo/alimta, although it did take a bit of time to get all the side effects well-managed. She never had any nausea (hopefully it will be the same for you!) so she finally got them to take the Zofran out of the mix and her digestive system afterwards was much better, but she still needed small doses of steroids to avoid an itchy rash that appeared after the 2nd treatment.

The important thing is to work with your oncologist to keep an eye on any side effects and work to minimize any drugs that are used for side effects that you don't seem to have. This drug combination does seem to have an effect on blood cells, so I am sure your doctors will keep good track of your red/white blood cells. As they will likely tell you, they may have you take folic acid (check with your doctor on the dosage) as it sometimes helps protect your red blood cells from going too low. Starting with the second treatment, my wife also took neulasta a couple of days after the treatment to keep the white blood cells from dropping too far. But my wife did still feel fatigue, usually 3-5 days after treatment, lasting for about 2-4 days. And her stamina was lower during those times the red blood cells were lower.

I also want you to know that the treatments haven't held us down too much. While my wife has been on continual treatment of one form or another for about 2 1/2 years now, she has continued to feel generally good, and we have had a wedding (our daughter's), as well as trips to Israel, Quebec, and the Galapagos.

May your treatment work really well with a minimal amount of side effects!

All the best, Scohn

Wife, non-smoker, dx 4/24/15 adeno NSCLC stage IV. HER2 Exon 20. 6x Carbo/Alimta; effect. 9/15 Alimta maint; ineffect. 11/15 - Opdivo; ineffect. 4/16 - ptK7 trial; effective 1.5 yr. 9/17 Gemzar; effective 16 mo. 8/18 -TAK788 Trial. 10/18 start Abraxane.

deedee1
Scohn; How awesome that she

Scohn; How awesome that she is doing so well! You just gave me hope. Kaiser has been very doom and gloom. They don't smile or express much emotion. Makes you feel hopeless. I can't let them destroy my self esteem. I am going to change back to my previous doctor since we are in open enrollment. If I am going to fight this battle, I am going to fight it with physicians and nurses that have a bit of a sense of humor. My goodness I worked for hospice and nothing helps more than a smile and a positive interaction! So hearing from you and how your wife is still with us gives me hope. I don't have any of the genetic mutations for all of the new drugs out there so that was a bit unsettling also. Thank you , thank you, thank you and God bless you both!

Deidre R Gneri

deedee1
Cards7up; sounds like you are

Cards7up; sounds like you are doing well having started your journey in 2010! Wow! That's great!

Deidre R Gneri

JimC
Hi deedee,

Hi deedee,

You have received some good advice from Judy and scohn. As they say, each patient's experience is different, but I will add what I know from my late wife's use of carbo/alimta. She too had a period of fatigue beginning a few days after chemo, but not so much as to keep us from remaining active. She also never had significantly lowered blood counts, with no necessity for interventions on that account, although folic acid and dexamethasone (on the day before, day of and day after chemo) were included in each cycle.

She did have some nausea, and found a few things that helped minimize it. First of all, it's best to try to prevent it. Taking your anti-nausea meds on a schedule rather than in response to it can help, as can taking a walk outside in the fresh air. You may also need to experiment with various foods to find which cause you trouble and which don't. Although less spicy, easier to digest foods tend to work better for most people, don't be too surprised if some foods you wouldn't expect to tolerate surprise you, so be creative! Also, a well-balanced diet is great, but since you need the calories, eat what you feel like...if that happens to be bacon or chocolate, so be it!

I also wanted to add that although mutations and targeted therapies get much of the buzz, chemo can be extremely effective for many patients, so you shouldn't feel too left out. In addition, the pace of research into new therapies, and the arrival on the market of such agents, is faster than ever before, so every day that your treatment keeps your cancer under control provides an opportunity for a new therapy to be introduced.

Best of luck with your treatments,

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>