second opinion

This topic contains 28 replies, has 5 voices, and was last updated by JimC Forum Moderator JimC Forum Moderator 2 months, 2 weeks ago.

Viewing 20 posts - 1 through 20 (of 29 total)
Author Posts   
Author Posts
August 31, 2017 at 9:29 am  #1291342    

deedee1

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.

August 31, 2017 at 12:20 pm  #1291343    
JimC Forum Moderator
JimC Forum Moderator

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


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 1, 2017 at 12:02 pm  #1291352    

deedee1

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.

September 2, 2017 at 12:28 pm  #1291364    
catdander forum moderator
catdander forum moderator

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

September 2, 2017 at 1:08 pm  #1291368    

deedee1

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.

September 5, 2017 at 3:52 pm  #1291412    

cards7up

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/


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

September 6, 2017 at 7:48 am  #1291415    
JimC Forum Moderator
JimC Forum Moderator

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


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 6, 2017 at 8:28 am  #1291417    

deedee1

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.

September 6, 2017 at 1:04 pm  #1291432    

cards7up

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


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

September 6, 2017 at 1:13 pm  #1291433    

deedee1

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

September 12, 2017 at 9:39 am  #1292017    

deedee1

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?

September 12, 2017 at 6:11 pm  #1292377    
JimC Forum Moderator
JimC Forum Moderator

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]


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 12, 2017 at 6:16 pm  #1292378    
JimC Forum Moderator
JimC Forum Moderator

[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


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 12, 2017 at 6:27 pm  #1292380    

deedee1

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.

September 12, 2017 at 6:48 pm  #1292381    
JimC Forum Moderator
JimC Forum Moderator

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


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 12, 2017 at 7:21 pm  #1292382    

deedee1

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 :(

September 12, 2017 at 8:13 pm  #1292383    

deedee1

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.

September 13, 2017 at 12:54 pm  #1292386    

deedee1

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.

September 14, 2017 at 11:09 am  #1292392    
catdander forum moderator
catdander forum moderator

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

September 14, 2017 at 12:00 pm  #1292395    

deedee1

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.

Viewing 20 posts - 1 through 20 (of 29 total)

You must be logged in to reply to this topic.