Please help me

This topic contains 59 replies, has 5 voices, and was last updated by JimC Forum Moderator JimC Forum Moderator 1 day, 9 hours ago.

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October 4, 2017 at 7:54 am  #1293215    

angelapassmore8151

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

October 4, 2017 at 1:47 pm  #1293218    
catdander forum moderator
catdander forum moderator

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

October 4, 2017 at 1:58 pm  #1293219    

angelapassmore8151

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

October 4, 2017 at 4:39 pm  #1293221    
JimC Forum Moderator
JimC Forum Moderator

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


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 4, 2017 at 5:40 pm  #1293222    

angelapassmore8151

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

October 4, 2017 at 6:11 pm  #1293223    

angelapassmore8151

Would CyberKnife be an option for the lung and spleen?

October 4, 2017 at 6:42 pm  #1293225    
catdander forum moderator
catdander forum moderator

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

October 4, 2017 at 7:00 pm  #1293226    

angelapassmore8151

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

October 4, 2017 at 11:54 pm  #1293228    

angelapassmore8151

Could lung and spleen be two primary cancers?

October 5, 2017 at 11:26 am  #1293232    
JimC Forum Moderator
JimC Forum Moderator

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


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 5, 2017 at 1:00 pm  #1293241    

angelapassmore8151

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

October 5, 2017 at 1:04 pm  #1293242    

angelapassmore8151

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…

October 5, 2017 at 1:43 pm  #1293244    

cards7up

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


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

October 5, 2017 at 2:00 pm  #1293245    

angelapassmore8151

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

October 5, 2017 at 3:53 pm  #1293246    

cards7up

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


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

October 5, 2017 at 11:56 pm  #1293247    

angelapassmore8151

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

October 6, 2017 at 4:27 am  #1293248    

cards7up

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


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

October 6, 2017 at 4:43 am  #1293249    

angelapassmore8151

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

October 6, 2017 at 4:49 am  #1293250    

angelapassmore8151

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

October 6, 2017 at 7:26 am  #1293251    

cards7up

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


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

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