Please help me - 1293215

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angelapassmore8151
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Please help me - 1293215

Hi Everyone,

I'm feeling really lost, worried, and petrified at the moment.

4th September my mum (Helen 66) came into my house and said she would need to make a Dr's appointment as she had a wheeze (deep breath inhale only) inconsistent shortness of breath when exerting herself also the feeling of phlegm at the back of her throat (No problems swallowing, no coughing either). She seen the Dr 8th september who diagnosed Coblestone throat and fast tracked an endoscopy app. Dr also gave my mum a slip for an X-ray as she is an ex smoker. Her endoscopy was clear, the day after the chest X-ray the Dr said there was a mass in her left lung.

Bloods were taken - which were normal and we had an appointment at the respiratory lung clinic.

The respiratory lung clinic app hit me like a tonne of bricks, the Dr pretty much barked at me when I asked a couple of questions and obviously had an issue with smokers and ex smokers.

My mums CT Scan review appointment was today. They are doing a bronchoscopy on a Friday this week with results next Wednesday but the Dr said the Tumor was 5.6cm on her left lung however it was also in her spleen and chest nodes.

My heart is broken here and the waiting is torturing me. Has anyone had similar experience to the above?

From google I know it's a spread and I know it's advanced, I think I just need to feel like I'm not alone.

Kind Regards
Angela

catdander
Hi Angela,

Hi Angela,

You're not alone Angela and we at Grace understand the agony of waiting. The bronchoscopy will look for a diagnosis of cancer which is probable but not an absolute certainty. If cancer is found they will want to know if the other 2 sites are cancer possibly by a biopsy of one of the 2 sights. Mutation testing will determine what is any biological treatments are available. Each step will inform the next step. It's a process and takes longer than anyone wants. I hope for the best for your mum. Please keep us posted and we'll be here to answer any questions.

All best,
Janine

angelapassmore8151
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Thanks for replying to me

Thanks for replying to me Janine. I can't find much online about primary lung cancer spreading to the spleen. I know you can live without a lung and also a spleen but I am confused and too emotional to think straight tonight but if you can remove a lung and a spleen is this an option? Xx

JimC
Hi Angela,

Hi Angela,

As Janine stated, the uncertainty created by these types of scan findings can be very difficult. As you have found from your research, it is quite unusual for lung cancer to spread to the spleen. Finding out whether what's seen in the spleen represents metastatic spread of lung cancer will play a significant role in determining the course of therapy. Without metastasis to the spleen, surgery and radiation would be a more likely option, possibly with the possibility of a cure. If lung cancer has spread to a distant site such as the spleen, then the standard therapy would be systemic-chemotherapy, targeted therapy or immunotherapy.

I know that you would like to have a better idea about what to expect, but as Janine stated each step in the diagnostic process will help determine the next step. Only then will it become clear which treatments will be best for the situation.

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>

angelapassmore8151
angelapassmore8151's picture
Hi Jim,

Hi Jim,

Thanks for getting in touch I appreciate your help. I am trying desperately to educate myself on LC.

Since my mum mentioned her wheeze I have literally been on line searching and getting no where.

I don't know what questions I should be asking dr's and I'm getting increasingly frustrated with myself made worse as I don't understand the spleen link. I was just getting my head around the thought of her having lung cancer but after the CT Review today the findings and lack of info has knocked me for 6.

My poor mum is home after being launched into a world we know nothing about. Blaming herself for not noticing symptoms. But how can you notice symptoms when they are not there..
Xx

angelapassmore8151
angelapassmore8151's picture
Would CyberKnife be an option

Would CyberKnife be an option for the lung and spleen?

catdander
Without knowing what the

Without knowing what the tumors represent it's not possible to guess what would be appropriate. As Jim stated if the cancer has spread outside the lungs systemic treatment is likely to be the most helpful.

We have an extensive library that offers a lot of info. You may want to start with this, http://cancergrace.org/lung/2010/04/05/an-introduction-to-lung-cancer/

I know it seems like you'll never get a handle on this but if you mom does have lung cancer once you grasp the basics your education will move much more quickly.

Janine

angelapassmore8151
angelapassmore8151's picture
Thanks very much Janine. I

Thanks very much Janine. I will read through the link you gave.

It's 3am Thursday here, her bronchoscopy is Friday morning and results Wednesday so I will update you then.

You guys are educating me more than what I've seen on line so far and for that I thank you. Xx

angelapassmore8151
angelapassmore8151's picture
Could lung and spleen be two

Could lung and spleen be two primary cancers?

JimC
Although the simultaneous

Although the simultaneous discovery of a possible cancer in two locations tends to suggest they are related, it also is possible to discover two unrelated cancers at the same time. Further workup should reveal the nature of the lung and spleen findings.

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>

angelapassmore8151
angelapassmore8151's picture
Jim, Again I thank you for

Jim, Again I thank you for replying to me.

I think although it's seems to be rare when lung cancer goes the spleen given its all on her left side I think it's more likely went from the lung.

I was just looking on line at google 10 mins ago and looked at stages in "images" but I can't find an image that shows a lung cancer with chest node involvement and spleen.

Everything I find is either not enough or too much where stage 4 has multiple spreads and my mum has primary in the left lung, nodes in chest mediastinum and spleen.

Do you know what I mean?

The size of her lung mas is 5.6cm so would probably fit T3 N1 M1.....

There is just so much information good and bad on line...

I read your story it was sad and lovely wrapped in one. Xx

angelapassmore8151
angelapassmore8151's picture
Or maybe T2 N1 M1 as the

Or maybe T2 N1 M1 as the Tumor is less than 7cm, she has it in her chest nodes N1 and it's also in her spleen M1.

I find this so confusing...

cards7up
Until the biopsy is done and

Until the biopsy is done and also a biopsy on the spleen, then you can't tell if it's cancer or not. Scans can only show suspicion for and are not a diagnosis. Only the biopsy can diagnose cancer. And until all the info is in, there's no way to know what it is, if it's cancer, what type it is, and what stage it is. If it turns out to be cancer, then she still needs to have a brain MRI to get to a complete diagnosis. In the US, it takes around 6 weeks to get to a complete diagnosis after all testing is done.
You also cannot look up treatment without knowing what type and stage it is. It's best to wait for the diagnosis then you can come back and ask your questions.
I know it's hard, I've been there and done that. With myself and also my Mom.
Take care, Judy

angelapassmore8151
angelapassmore8151's picture
Hi Judy,

Hi Judy,

Thank you!

I was under the impression they know from the CT Scan that it was all cancer. Apologies it's just my panic'd mind!

Her Bronchoscopy is tomorrow morning.

Wow, just read the bottom of you mail that is amazing and so nice to see. Xx

cards7up
Just know that having lung

Just know that having lung cancer today is not an automatic death sentence. There are many new treatments and people are surviving and living fairly well for many years. How is your Mom's overall health?
Take care, Judy

angelapassmore8151
angelapassmore8151's picture
Hi Judy,

Hi Judy,

My mums overall health is great that's why I'm struggling with this as much.

She does everything she's ever done and her symptoms have only been inconsistent. You know, say she exerts herself then she gets breathless but I mean she can walk quickly climb hills and be perfectly fine. Back ache only some days that if she changes position it goes away.

Her wheeze is very intermittent and only when she does a big breath in. She eats and drinks, no fatigue her bloods all normal.

She's stressed out just now and said to me she feels stupid for not noticing this. I'm trying to tell her how can you noticing LC symptoms that aren't really showing?

She thought her occasional back ache was from work, she is a carer in a nursing home and also watches my son who is a wild 3 year old!

She thought her wheeze was a throat wheeze too.

Xx

cards7up
Please tell your Mom that

Please tell your Mom that these symptoms would not necessarily preclude lung cancer and could be any number of things. Unless many people are very sick due to having undiagnosed LC, then it's hard to know what any one of these symptoms signify. She's now on the right track to getting a diagnose and it's time to look forward and not behind. Take care, Judy

angelapassmore8151
angelapassmore8151's picture
Hi Judy,

Hi Judy,

Thank you I will tell her what you said. Xx

I thought they were certain it was lung cancer after her X-ray and after the CT Scan the Dr confirmed it then and said it was advanced?

I thought because the CT scan lit up the chest lymph nodes and the spleen it was confirmed. Xx

angelapassmore8151
angelapassmore8151's picture
When I asked the Respiratory

When I asked the Respiratory Lung Doctor if there was a chance the xray mass could be benign or a fungal infection she barked at me and said it's highly unlikely to be benign, and I was just flabbergasted at the spleen and node involvement. Xx

cards7up
CT scans don't light up, that

CT scans don't light up, that would be a PET scan. Has she had a PET? They cannot confirm cancer without a biopsy, as already stated. Unless they biopsy all three spots, then you won't know if they're all cancer or not.
I would definitely want the spleen biopsied. Take care, Judy

angelapassmore8151
angelapassmore8151's picture
Hi Judy,

Hi Judy,

It was definitely a CT Scan she had. He showed us it on Wednesday.

Just picked my mum up from the day unit and she said the Bronchoscopy was awful she started to bleed. That was them doing a biopsy too Xx

catdander
Only the doctor can say why

Only the doctor can say why she believes the tumors to be cancer but it's likely the size and shape inform her thoughts. Anything larger than 3 cm solid lung mass is more likely than not and at 5 cm it's very likely. But as Judy said it's not cancer until it's seen under a microscope. Most any oncologist who has been practicing more than a couple of years will have seen masses that they thought certain to be cancer but ended up not being cancer.

FWIW, when you read about cancer and see words like unusual, rare, common, typical, etc know that cancer can and will do anything. Expect at least one element but usually several elements about an individual's cancer to be rare or unusual or unique, it's the one thing you can count on. It's a strange oxymoron about cancer. I said all that to say if there's lung cancer spread to the spleen it would be treated like lung cancer spread to any other part of the body. It won't have any specific meaning about how to treat.

There are many nodes in the chest and it depends on where they are in relation to the primary mass as to what N value would be assigned. Dr. Weiss talks about that about half way down the page of the intro.

I hope this is all for naught and your mom doesn't have cancer. But know you have a place to find answers.
All best,
Janine

angelapassmore8151
angelapassmore8151's picture
Janine, I am so grateful for

Janine, I am so grateful for you explaining this to me. You, Judy and Jim put the information I'm looking for across in a way I understand. I am so pleased Dr West told me about this website otherwise I wouldn't have found the three of you!

My mum and me slept for a couple of hours after her bronchoscopy she's drank glasses of water and fresh apple juice and demolished a pizza, salad and ice cream!

Said she thought they were trying to murder her with the bronchoscopy as she found it really difficult because she has always had sinus problems so it proved difficult to do because she's always blocked up. Xx

I hope that too Janine, I feel so low just now I can't even explain it. Xx

angelapassmore8151
angelapassmore8151's picture
Hi Everyone,

Hi Everyone,

Can someone tell me if the metastasis is solitary can it be removed?

I am trying to think of things to write down for Wednesday but due to the emotion of this I am struggling to see the wood from the trees and I cannot allow myself to fail because I can't think straight.

Xx

catdander
Hi Angela,

Hi Angela,

I think we all can relate to your question. Dr. West has written an excellent post on the subject.

http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-metas...

I hope this helps, let us know if you have follow up questions. You're right in wanting to know all you can beforehand. There's so much to know about cancer that a doctor can't guess at what you do and don't know so you just can't expect them to know where to start so often the doc doesn't try. But if you have specific questions they get an idea of want you want to know.

Keep us posted.
Best,
Janine

angelapassmore8151
angelapassmore8151's picture
That was great Janine.....

That was great Janine..... Thank you!

I've had a good read and I've written down a few things along with a few treatments but I guess I need to wait until Wednesday to actually hear from the Dr's.

I don't want them to give me a stand offish "Vanilla" approach. I genuinely want them to tell me "what they would do" If the shoe was on the other foot and this was someone who meant the world to them.

I just don't want to be wrong here. Xx

catdander
Asking what would you do if

Asking what would you do if it were you or your ___ is a question that may illicit a different response than otherwise. I believe it was Dr. Weiss who said he does.

If your mom has incurable lung cancer they will want to know if there are mutations or high PD-L1 expression. What they look for first depends on histology. It will take some time to get it right but it's important to get started on the right foot.

I know you want to get ahead of the curve so you can have an educated conversation with the doc but with more detail usually comes more possibilities, hence more information, at least for now.

The question today remains, is this lung cancer. Then you'll need to find out about the nodes and/or spleen.

I really understand. Before my husband was diagnosed he had undiagnosible biopsies (no oncologist) but we knew it was almost certain to be cancer because of bone destruction (nothing destroys bones like cancer). It's a lot to take in without a clear path. It will happen and the release of stress will be apparent even if it turns out to be cancer. One step, one day, one moment at a time. Your mom is lucky to have you including the ice cream and the pizza... :)

Janine

angelapassmore8151
angelapassmore8151's picture
Your right Janine. I usually

Your right Janine. I usually am very controlled and structured, I am an Account Manager for an Audio Visual company so can make decisions based on my instincts and can control situations without blinking an eye.

I just feel my personal life is out of control and I'm constantly scrambling between "Don't think about it - Act normal" and having all of the stress and worry consume me to the extent I feel hysterical.

Do you think there is a chance this may not be LC? Xx❤️️

catdander
It's absolutely possible that

It's absolutely possible that this isn't cancer. There are several other possibilities one being infection but the larger the mass the more likely it is to be cancer. My hopes are very much alive that this isn't cancer.

angelapassmore8151
angelapassmore8151's picture
Can infection affect your

Can infection affect your chest nodes? Xx

JimC
Hi Angela,

Hi Angela,

Yes, it certainly can. As Dr. West has said, although cancer can enlarge chest nodes, "it's not cancer until a biopsy shows cancer under the microscope, and I can assure you that we do see things that look concerning for cancer that turn out to be infection or inflammation, which can also enlarge lymph nodes in the chest." - http://cancergrace.org/forums/index.php?topic=1701.msg9995#msg9995

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>

angelapassmore8151
angelapassmore8151's picture
Wow Jim, thank you so much. I

Wow Jim, thank you so much. I'll read this now. Xx

angelapassmore8151
angelapassmore8151's picture
Adenocarcinoma the said it's

Adenocarcinoma the said it's been there for around 6 months

JimC
Angela,

Angela,

If that is the result from the bronchoscopy, I am sorry to hear that. I think the next question would be to determine whether the finding in the spleen represents cancer. Does the doctor plan a biopsy of that location? That result would make a difference in staging and possibly treatment as well.

Keeping you and your mom in our thoughts.

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>

angelapassmore8151
angelapassmore8151's picture
Jim,

Jim,

Thank you for responding to me. They didn't say about the spleen biopsy she treated it all as one?

Spread to both sides of chest lymph nodes. I expected chemo radio then possibly surgery?

Is remission possible?

JimC
Angela,

Angela,

Since the lung mass and lymph nodes are confirmed as lung cancer, it may not be felt necessary to check out the spleen, since the first choice in treatment would be chemotherapy, possibly in combination with radiation. Surgery is at times an option with some Stage III lung cancers, but with a possible metastasis to the spleen, your doctors will probably want to follow it and see if it responds to the chemo before even considering surgical options.

Good luck with treatment.

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>

angelapassmore8151
angelapassmore8151's picture
Jim, can you help me with

Jim, can you help me with what I should do next?

Where should I go, can people survive this?

I'm lost

angelapassmore8151
angelapassmore8151's picture
I am trying to get a second

I am trying to get a second opinion as I feel for some reason they are just binning my mum off with chemo when actually as 66 she is in better health than people half her age!

I am angry. We go to these apps and it's put to you in a 10 minute gap that you have terminal cancer and chemo can buy you time! I mean really???

Perhaps with some frail elderly person - Not someone at 66!

catdander
I'm so sorry your about your

I'm so sorry your about your mom's diagnosis. I encourage you to go back and read the intro to lung cancer link, about halfway through is a section on staging. The type of treatment depends on stage of cancer. Unfortunately if the cancer is in both sides of the mediastinum nodes the cancer is staged IV and not considered curable but it is treatable. The reason for this staging is the 2 lungs are connected only by blood and lymph system which is connected to the rest of the body and cancer cells can be expected to be circulating throughout the body. This is why systemic treatment is used. Surgery and radiation are reserved for either palliation or curitive tx because with each use it destroys healthy tissue of which you want to maintain. With the possibility of curing or to mitigate symptoms surgery or radiation is considered worth the loss of healthy lung tissue.

A 2nd opinion is never a bad idea. http://cancergrace.org/cancer-101/2011/11/13/an-insiders-guide-to-the-se...

I may have already shared this with you, http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-metas...

Here is a link to our FAQ page or it can be found on the bottom of the "General Cancer Info" drop down. http://cancergrace.org/faq

You'll start to make sense of all this soon.

Janine

angelapassmore8151
angelapassmore8151's picture
Thanks Janine.... I'm

Thanks Janine.... I'm completely gutted and lost

catdander
I understand and wish I could

I understand and wish I could say or do something that would help. Lungevity is a really helpful lung cancer support forum where people help each other navigate the emotional battlefield of cancer care. And we are here for all the support we have to offer. Please keep us posted. You're in my thoughts.

Janine

angelapassmore8151
angelapassmore8151's picture
Thanks so much Janine. Xx

Thanks so much Janine. Xx

Do you know if Adenocarcinoma responds good to anything?

JimC
Hi Angela,

Hi Angela,

Yes, adenocarcinoma of the lungs does respond to a variety of treatments, and over the past several years more options have become available. Do you know if enough tissue was collected to test the cancer cells for targetable mutations? When the presence of mutations such as EGFR, ALK or ROS1 are detected, there are specific targeted therapies which can be used, in addition to standard chemotherapy and immunotherapy.

I agree with Janine that a second opinion is a good choice, especially at this point when treatment decisions are being made.

I understand how difficult this time is for you; it's a lot to take in very suddenly. Most people find that they start to feel a bit better once a treatment plan is in place and you feel as though finally something is being done about the problem.

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>

angelapassmore8151
angelapassmore8151's picture
Hi Janine,

Hi Janine,

Thank you for sharing Lungevity with me. Xx

angelapassmore8151
angelapassmore8151's picture
Hi Jim,

Hi Jim,

They are testing for 3 mutations but it was EGFR, ALK and PD-1 the specialist said. I am hoping the Oncologist tells us more on 23rd. Then I'll get a second opinion.

Can I ask you something?

Can Chemotherapy kill cancer in Mediastinum lymph nodes?

JimC
Angela,

Angela,

Yes, it can. Chemotherapy is a systemic treatment, which means it can kill cancer cells throughout the body.

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>

angelapassmore8151
angelapassmore8151's picture
Thanks very much for

Thanks very much for confirming that to me Jim. Xx

angelapassmore8151
angelapassmore8151's picture
Hi Guys,

Hi Guys,

I have a question for you. After the CT Scan results the Dr said that probably a combo of Chemotherapy, Radiotherapy, surgery.

After Adenocarcinoma was confirmed on 11th the other Dr only mentioned Chemo. Do you know why Radiotherapy wouldn't be included?

Also, Can someone clarify if Targeted Therapy and Immunotherapy are the same thing or seperate?

They are testing for EGFR,ALK and PDL1 and we see the oncologist 23rd. But I just wondered if it is Chemo, Targeted Therapy then Immunotherapy.

Xx

JimC
Hi Angela,

Hi Angela,

Usually, the recommended treatment is based on the staging of the cancer. For stage III lung cancer, chemotherapy, radiation and, in some instances, surgery. Stage IV treatment is typically limited to systemic treatments such as chemotherapy, targeted therapy or immunotherapy. The change in recommended treatment is most likely based on the presence of affected lymph nodes on both sides of the mediastinum, making the cancer stage IV, as Janine described earlier in this thread. The local therapies (surgery and radiation) aren't used because killing cancer cells in one area of the body doesn't solve the problem of the cancer cells having spread to the bloodstream and/or lymph system.

When specific mutations/genetic alterations, such as EGFR or ALK, are found in a patients cancer cells then targeted therapies are used. These are drugs which have been designed to attack cancer cells which have that specific genetic anomaly. Immunotherapies, on the other hand, seek to utilize the body's own immune system to kill cancer cells. Cancer cells which express a high level of the protein PD-L1 tend to respond better to current immunotherapies, which is why your doctor is testing for it. Dr. West has a brief description of immunotherapy and PD-L1 here.

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>

angelapassmore8151
angelapassmore8151's picture
Than you Jim!

Than you Jim!

Is it either or treatment wise as in Chemotherapy, Targeted Therapy, Immunotherapy or are they used individually?

I'll have a look at the link shortly. Xx

JimC
They tend to be used

They tend to be used individually, although combinations are also possible.

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>

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