All Over The Place Posted October 12, 2017 Share Posted October 12, 2017 Hi All, I don't really know what I am looking for from this site. One minute it's a bit of reassurance, hope, comfort, guidance, normality. The next minute I just want my normal life back 😔 4th September - My mum came to my house to watch my son while I go to work. She mentions a wheeze (intermittent and on deep breath only) I panic and get her to phone the Dr. App booked for 8th. Diagnosed with Cobblestone Throat given Amoxicillin and also fast tracked Endoscopy (which was clear). As a precaution an X-ray slip was given as my mum (Helen 66) is an ex smoker. I took my mum for the chest X-ray and the next day our lives changed. The Dr phoned to say there was a 6cm mass on her left lung. We were at the Drs surgery they done bloods (which were normal) and gave another antibiotic Doxycycline. Following week we went to the Respiratory Lung Clinic, they done various tests and arranged a CT Scan. Results came back to say 5.2cm in her left lung, with Mediastinum nodes and 4.8cm mass on spleen. Literally no persistent symptoms, slight achy back now and again but if she moves position it's gone, slight intermittent breathlessness on exertion. My mum is very fit and active eats great has no fatigue, no cough but has all this! Yesterday, They said it was Adenocarcinoma. My heart broke. I just don't understand. Oncology app 23rd and between now and then they get for mutations. Waiting is awful, I'm climbing the walls, can't sleep can't concentrate I feel like this is consuming me. Night time is the worst. If you can relate to any of my story please let me know. Currently I feel alone and isolated and this is too important for me to make a mistake with when it comes to treatment so I am desperately trying to educate myself on LC. Judy, Janine and Jim at GRACE have been great but I need some control and due to the fact it's my mum is all overwhelming and very emotional. Xx Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted October 13, 2017 Share Posted October 13, 2017 Welcome here! OK - let's start with some information. First, understand I'm not a physician but am a long tenured survivor of advanced stage Squamous cell non-small cell lung cancer. I was once exactly where your mom is now and that was nearly 14 years ago. My first suggestion is if I can live, so can your mother. While your mom has non-small cell lung cancer (NSCLC) our subtypes are different. Your mother has adenocarcinoma (I hyperlinked adenocarcinoma - click it to see more information) and that is indeed fortunate because if the tumor markers (mutations) line up, she may receive new targeted therapy treatment. So while there is nothing good about a lung cancer diagnosis, your mom's subtype may prove a treatment advantage. I can indeed relate to your story. My diagnosis was also a surprise. One day I started coughing blood, the next an x-ray, and then my preliminary diagnosis. Shock for me was a vast understatement. Waiting is indeed awful, in fact, I still see my oncologist twice a year and need to sweat out the scan results. Here is a summary of information that may be useful to you and your mother. It looks like a pathology report on tumor markers (mutations) may be your mom's last diagnostic step. It will also allow her oncologist to develop a treatment plan. Let us know what her plan is when you learn it (tells us the drugs she is receiving and or the type and duration of radiation). Those of us with direct experience with drugs and radiation can then sign on and give you information about their treatment experience including tips for dealing with side effects. We well understand the overwhelming and very emotional state. We've been there but look around and notice that many of us are still here! Stay the course. Tom BridgetO 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted October 13, 2017 Share Posted October 13, 2017 Hi and welcome! Your mom's siituation is not unusual in that earlier stages of lung cancer typically have no symptoms. Mine was diagnosed early because I had CT scans to watch for possible spread of an earlier non-lung cancer. Your anxiey and confusion is normal for anybody who has a family member diagosed with lung cancer. You'r not alone in this. we on this forum understand it.Hang in there and stay with us. You'll find a lot of hope here, as well as information. Bridget O All Over The Place 1 Quote Link to comment Share on other sites More sharing options...
Steff Posted October 13, 2017 Share Posted October 13, 2017 I'm here, letting you know that I can relate...feeling alone, can't sleep, feeling the desperate need to learn everything about lung cancer as quickly as possible, and scared to death of the unknown. My mother has adenocarcinoma as well. She was originally diagnosed in 2014. She is now battling a recurrence of lung cancer. Please believe me when I say that it WILL get better. The initial waiting and initial diagnosis seems almost worse than the treatments themselves. Now that you have found us, you are not alone. Everyone who has ever responded to my posts on these forums have helped me feel better with words of encouragement and sharing their personal experience and knowledge. Please reach out to us, we are here for you. I am sorry you and your family are having to deal with all of this. Sending hugs your way. All Over The Place 1 Quote Link to comment Share on other sites More sharing options...
All Over The Place Posted October 13, 2017 Author Share Posted October 13, 2017 Thank you all for replying! I've just woke up and for that first few seconds I feel normal........ then BANG!😩 Tom, The links are very useful! You have done great! Can I ask you guys, if Cancer is in the mediastinum nodes..... does this mean remission can't happen? can you get rid of cancer in the nodes in that area? It seems really unusual in the spleen too? the lymph node involvement does make me want to be sick as before I started to google and literally terrified myself I was thinking they would just remove her spleen and lung. I just want it gone💔 Bridget, When were you diagnosed? You and Tom sound so calm... Steff, I am so sorry you are going through this with your mum too. How has she been since original diagnosis? Tom, What treatment did you have? You sound pretty super human which is great!! Angela Xx Quote Link to comment Share on other sites More sharing options...
All Over The Place Posted October 13, 2017 Author Share Posted October 13, 2017 I meant to mention mutation wise they mentioned testing for EGFR, ALK, PDL-1. Xx Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted October 13, 2017 Share Posted October 13, 2017 Angela, Quick answers -- on the way to granddaughter's first birthday party.... If in mediastinum nodes, recurrence can't happen? No. Location of primary or secondary tumors or nodes has no effect on recurrence I know of. Can you get rid of cancer in nodes? Yes, many ways. Chemo and SBRT, a special form of EBRT. We all just want cancer gone. Me calm? Now maybe, while in treatment I was a nightmare. Bridget is calm. Susan is calm. Treatments? Pre surgical EBRT and Taxol and Carboplatin to shrink single tumor in right main-stem bronchus. Right pneumonectomy. Two more thoracic surgeries to repair pleural-bronchial fistula. Four tracheal stent insertions. Twelve more infusions of Taxol and Carboplatin after cancer found in my remaining lung. CyberKnife (form of SBRT) to zap the one tumor not responding to chemo. Not superhuman, I assure you. My wife is superhuman. I was just along for the ride, mainly protesting. Stay the course. Tom All Over The Place 1 Quote Link to comment Share on other sites More sharing options...
All Over The Place Posted October 13, 2017 Author Share Posted October 13, 2017 42 minutes ago, Tom Galli said: Angela, Quick answers -- on the way to granddaughter's first birthday party.... If in mediastinum nodes, recurrence can't happen? No. Location of primary or secondary tumors or nodes has no effect on recurrence I know of. Can you get rid of cancer in nodes? Yes, many ways. Chemo and SBRT, a special form of EBRT. We all just want cancer gone. Me calm? Now maybe, while in treatment I was a nightmare. Bridget is calm. Susan is calm. Treatments? Pre surgical EBRT and Taxol and Carboplatin to shrink single tumor in right main-stem bronchus. Right pneumonectomy. Two more thoracic surgeries to repair pleural-bronchial fistula. Four tracheal stent insertions. Twelve more infusions of Taxol and Carboplatin after cancer found in my remaining lung. CyberKnife (form of SBRT) to zap the one tumor not responding to chemo. Not superhuman, I assure you. My wife is superhuman. I was just along for the ride, mainly protesting. Stay the course. Tom Thank you all for replying! I've just woke up and for that first few seconds I feel normal........ then BANG!😩 Tom, The links are very useful! You have done great! Can I ask you guys, if Cancer in the mediastinum nodes..... does this mean remission can't happen? the lymph node involvement does make me want to be sick as before I started to google and literally terrified myself I was thinking they would just remove her spleen and lung. I just want it gone💔 Bridget, When were you diagnosed? You and Tom sound so calm... Steff, I am so sorry you are going through this with your mum too. How has she been since original diagnosis? Tom, What treatment did you have? You sound pretty super human which is great!! Angela Xx Quote Link to comment Share on other sites More sharing options...
All Over The Place Posted October 13, 2017 Author Share Posted October 13, 2017 Hi Tom, Hope you have a great day! Thanks for replying to me too. Your wife sounds amazing!! I was quite upbeat earlier but unfortunately I'm back with floods of panic! My mum wasn't really upbeat today either, she's feeling a bit deflated which I'm guessing can be shock? Can I clarify what you meant when you said below "If in mediastinum nodes, recurrence can't happen? No. Location of primary or secondary tumors or nodes has no effect on recurrence I know of" ...... I'm being a bit thick here and don't understand what you mean (apologies) I was thinking they may have been able to cure my mum if they removed the cancer from her lung and spleen but I am puzzled by the mediastinum node involvement - what I mean is does chemo take the cancer out the nodes too? They have never even told me a stage so as much as I am now going nowhere other than this site and GRACE I still feel quite in the dark. Emotional rollercoaster indeed. Ask your wife to bottle her super power and please share it with me as I have no idea what to do. Xx Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted October 13, 2017 Share Posted October 13, 2017 Angela, Your question: “if cancer in the medistinal nodes, does this mean remission can’t happen.” I answered no meaning remission can happen. We don’t use “remission”; we speak of no evidence of disease or NED. NED can happen if cancer is in medistinal nodes. Nodes can be treated with chemo or radiation or specialized radiation. They can also be removed surgically. If tumors in lung, spleen and lymph nodes, likely stage 4. Many of us were or are at stage 4. What to do? Love your mother. Be there for her. Learn about the disease. Be her library of knowledge. Stay the course. Tom. All Over The Place 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted October 13, 2017 Share Posted October 13, 2017 hi Angela, My lung cancer was diagnosed in November 2016 after it was removed by a lobectomy. Before that, they suspected cancer but couldn't biopsy due to location. I aso had breast cancer in 2008 and a rare and aggressive form of cervical cancer(stage 3) in 2011. For that one I have regular CTs to watch for metastasis. It was actually a releif to find out ithe lung nodule was an early (stage 1a) lung cancer rather than a metastasis from the cervical. So for the lung cancer, I didn't have to have any treatment other than. the surgery, just CTs every 6 months to be sure it's not recurring. I think i am pretty calm most of the time, but there are times when I'm not. I do get anxious, especially around scan time, but it's not as bad as it was for the first few scans after my cervical cancer when I thought for sure this was the one that was going to show metastasis. Early on, I thought I wasn't going to live long and I wouldn't make any plans for anything more that a couple of months out. As the years passed, I relaxed (some!) and began to think I might be cured, actually. I went through some pretty aggressive treatment (big surgery, concurrent chemo and radiiation and more chemo) and had some unpleasant (to say the least) side effects, some of which are long term--I still have them. But here I am! No evidence of disease on any of my 3 cancers. In any event, believing that I might not live long, I chose to live as fully as I could and not to waste my time. I still do waste quite a bit of it, actually, since i'm human. But I don't waste a lot of it worrying, or rather, I usually can do something else while I'm worrying, rather than being consumed by it. I must say that anti-depressants help me a lot. Hang in there, it can get easier to deal with, even though you're dealing with some hard things. You can find a new normal. Bridget O Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
All Over The Place Posted October 13, 2017 Author Share Posted October 13, 2017 Roger that Tom. Xx Hope you had a great party! Quote Link to comment Share on other sites More sharing options...
All Over The Place Posted October 13, 2017 Author Share Posted October 13, 2017 Wow Bridget! I had no idea! Your doing great and seem very in control despite everything you've had thrown at you ❤️️ I went to Asda with my mum and my youngest son tonight and when were in the queue my mum had to go sit down, she said it was a panic attack - you know, heart racing, feeling confined almost like an outer body experience!! I was about to go into meltdown too as before this I was the one who worried and panic'd and she was as cool as a cucumber. I dont think I've been as mentally drained as what I have these 4 weeks. Xx Quote Link to comment Share on other sites More sharing options...
All Over The Place Posted October 16, 2017 Author Share Posted October 16, 2017 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 perhaps done in this order? Chemotherapy, Targeted Therapy then Immunotherapy. Xx Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted October 16, 2017 Share Posted October 16, 2017 Angela, Good questions, and, of course, be mindful that I am not a doctor in reviewing my answers. Advanced stage disease where curative surgery cannot be used is normally treated according to a First Line Standard of Care. In the US, that would mean combination therapy consisting of radiation and concurrent chemotherapy. Note, I use the word normally because recent treatment methods have, in some instances, replaced the normal First Line Standard of Care (First Line means first treatment experience). Targeted Therapy is one of the recent innovations. To receive targeted therapy, the tumor biopsy must display certain biomarkers. A percentage of non small cell adenocarcinoma types are usually the beneficiary of Targeted Therapy. Immunotherapy is an exciting new form of chemotherapy and I say exciting because it can be used to treat non small cell squamous cell and adenocarcinoma lung cancer. Before immunotherapy advances, squamous cell had nothing but conventional chemotherapy (i.e. Taxol and Carboplatin or similar) as a treatment vehicle. Again, certain biomarkers must be present in the biopsied tumor to benefit from Immunotherapy. As to the order of treatment, the order varies depending on the type of lung cancer and the type of Targeted Therapy or Immunotherapy used. Some Targeted Therapies have been deemed so effective, they have replaced the conventional chemotherapy as First Line Standard of Care. Targeted Therapies and Immunotherapies are often used as a Second Line Standard of Care treatment. Either way, these innovations are exciting news for the lung cancer community. The EGFR and ALK markers are indicators for Targeted Therapy while the PD-L and PD-L1 biomarkers are aimed at Immunotherapy. And, remember these new chemotherapy treatments may be paired with radiation therapy. There have also been advances in radiation. See this link and click on What are the different types of External Beam Radiation Therapies (EBRTs)? Stay the course. Tom All Over The Place 1 Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted October 16, 2017 Share Posted October 16, 2017 Angela, I was diagnosed in February 2016 during surgery to remove a mass in my left lung. A previous biopsy didn't indicate cancer so I wasn't expecting that result. My mass had spread to lymph nodes in my chest. I was stunned, angry, confused, scared - you name it, I was there. I followed my surgery with four rounds of chemotherapy. About two months after I ended chemo, we found cancer in my thyroid (both thyroid and metastatic lung cancer). Again, I panicked, cried, screamed and almost gave up. But I didn't and I did everything my doctors suggested. I just finished chemo and radiation for a recurrence in my lymph nodes. All this to say that yes, I am now calm. I realize that I can't control what the cancer does or where it goes, but I can control how I react. On this site, I have found so much information and so many long term survivors who are absolutely the best at providing hope. Don't get me wrong - the treatment is not fun. But at the end of the day, I'm here and making plans to live my life; part of me pretends that lung cancer cloud isn't following me. Tom Galli, BridgetO and All Over The Place 3 Quote Link to comment Share on other sites More sharing options...
All Over The Place Posted October 16, 2017 Author Share Posted October 16, 2017 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 perhaps done in this order? Chemotherapy, Targeted Therapy then Immunotherapy. Xx Quote Link to comment Share on other sites More sharing options...
All Over The Place Posted October 16, 2017 Author Share Posted October 16, 2017 Thanks Tom! That makes much more sense to me ❤️️Xx Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
All Over The Place Posted October 16, 2017 Author Share Posted October 16, 2017 Hi Susan, WOW! What a story! I've had to read it twice! So you had two primary cancers at the same time?? You have a wonderful way of looking at things. I am so pleased to have found this site. Xx Quote Link to comment Share on other sites More sharing options...
Steff Posted October 18, 2017 Share Posted October 18, 2017 All Over the Place: Here are the basic definitions of targeted therapy and Immunotherapy - they are different, but both can be equally effective. I've also included the links to the Lungevity pages that have more information. Targeted cancer therapies are a type of biological therapy that aims to target cancer cells directly. They target certain parts of cells and the signals that cause cancer cells to grow uncontrollably and thrive. These drugs are often grouped by how they work or what part of the cell they target. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/targeted-therapy Immunotherapy is considered a type of biological therapy. It aims to enhance the body’s immune response and stop lung cancers from escaping from the immune system. Immunotherapy is a treatment that strengthens the natural ability of the patient’s immune system to fight cancer. Instead of targeting the person’s cancer cells directly, immunotherapy trains a person’s natural immune system to recognize cancer cells and selectively target and kill them. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/immunotherapy I'm not sure that someone would receive both targeted therapy and immunotherapy, but I have heard of people receiving radiation and immunotherapy at the same time. And Keytruda (which is an immunotherapy for those with the PD-L1 mutation) is now recommended to have chemo combined with it during the first 8 or so treatments. The doctor may not be considering radiation at this point because they are considering surgery. For my mom's situation, if they would have been able to remove the final lymph node that was involved, she would have not had any follow up treatments. But be sure to ask why they are choosing this specific treatment plan. If they do not give you and your mom an answer you understand, continue to ask questions until you do understand. And never be afraid of looking for a second opinion. Tom Galli and BridgetO 2 Quote Link to comment Share on other sites More sharing options...
All Over The Place Posted October 18, 2017 Author Share Posted October 18, 2017 Thanks Steff, I will definitely ask and I'll update you guys so you all can keep me right. Xx Quote Link to comment Share on other sites More sharing options...
All Over The Place Posted October 19, 2017 Author Share Posted October 19, 2017 Hi All, I read this article earlier tonight and just wanted to clarify.... I know thanks to you guys that lung cancer spread to Mediastinum nodes and spleen can still go NED (I thank you all so much for educating me) The article below says: "when there are only a few locations of metastatic lung cancer (called oligo-metastatic), some studies suggest that by removing or eradicating each of those cancer deposits with aggressive treatments such as surgery or high-dose, precise radiation called stereotactic ablative radiotherapy or SABR, the cancer may be controlled for a long period of time" I am guessing as my mum only has metastatic lung cancer in her mediastinum nodes and spleen there for that would be classed as a "few locations" but so far high does radiation / SABR hasn't been mentioned? Should I be mentioning this at her Oncologist appointment on 23rd? Have a read, Let me know what you think. I am stressing out incase I go to this app and don't recognise the treatment the Onc talks about. Xx Article: When lung cancer has spread from an original tumor to other sites of the body, it is classified as metastatic (Stage IV), and the goal of treatment is to slow the cancer down with chemotherapy or radiation, but these treatments are unable to eradicate the cancer and survival is usually in the range of only a few months. However, when there are only a few locations of metastatic lung cancer (called oligo-metastatic), some studies suggest that by removing or eradicating each of those cancer deposits with aggressive treatments such as surgery or high-dose, precise radiation called stereotactic ablative radiotherapy or SABR, the cancer may be controlled for a long period of time. In order to further study the possible benefits of aggressive treatments in stage IV lung cancer, researchers completed this meta-analysis which evaluated data of 757 Stage IV NSCLC patients from 20 hospitals worldwide who had between one and five metastatic deposits that were removed surgically or eradicated with high-dose, precise radiotherapy. Patients in the study also had to have had aggressive treatment of their original lung tumor. The intent of the study was to determine whether long term survivors exist after aggressive treatment of oligo-metastases, and to propose a risk classification scheme that could be used to identify which stage IV patients are most likely to benefit from aggressive treatments. The analysis determined that the factors that impacted overall survival of the patients included the timing of when the metastases appeared, that is, whether the metastases appeared at the same time as the original lung cancer (synchronous) vs. if they appeared after the original lung cancer (metachronous), whether lymph nodes in the chest were involved (N-stage), and the type of lung cancer (adenocarcinoma vs. other types). Using these factors, the study identified three risk groups of patients 1) low risk patients (146), or patients who survived the longest, were those with metachronous metastases, with a 5 year OS of 47.8 percent; 2) intermediate-risk patients (201) -- those with synchronous metastases and no evidence of involved lymph nodes in the chest, with a 5-year OS of 36.2 percent; and 3) high-risk patients (184), or patients with the poorest survival, were those who had synchronous metastases and evidence of lymph node involvement in the chest; they had a five-year OS of 13.8 percent. Furthermore, the study found that despite receiving aggressive treatments, more than half of the patients progressed in previously treated areas or developed new sites of disease within one year of treatment. "Our study finds some stage IV NSCLC patients can achieve long-term survival after aggressive treatments; however, it is important to note that the patients in this study are a very select minority of stage IV patients who are younger, more physically fit, with a lower burden and slower pace of disease than the average stage IV patient," said lead study author Allison Ashworth, MD, a radiation oncologist who completed the study as part of her training at the London Health Sciences Centre at Western University, in London, Ontario. "We hope our study's results will help determine which stage IV NSCLC patients are most likely to benefit from aggressive treatments, and equally as important, help identify those patients most likely to fail, thus sparing them from futile and potentially harmful treatments. Our research, however, cannot answer the question of whether the longer survival is due to the treatments or simply because these patients have less aggressive disease. We must await the results of randomized clinical trials to answer this question. In the meantime, it is our hope that our study will help cancer specialists in making treatment decisions and in the development of clinical trials. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted October 19, 2017 Share Posted October 19, 2017 Angela, Absolutely it is something you should mention. In fact, we have a forum member who benefited from new radiation techniques for stage IV disease. Read her experience here. Stay the course. Tom All Over The Place 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted October 19, 2017 Share Posted October 19, 2017 I agree with Tom.This is something you should talk to your mom's doctors about. To avoid confusion, SABR is also called SBRT. Cyberknife is a specific brand name of SBRT. Has your mom consulted with a radiation oncologist yet? If not, she might want to ask for a referral. The radiation oncologists might have a different take on this than the medical oncologists or pulmonologists. Hang in there and keep asking questions! Bridget O. Tom Galli and All Over The Place 2 Quote Link to comment Share on other sites More sharing options...
All Over The Place Posted October 20, 2017 Author Share Posted October 20, 2017 Hi Tom, Thanks very much. I'll have a look shortly 💙 My mums cancer is in her lung and spleen. I would think this would be oligometastatic but does the mediastinum nodes represent another site? Then that would mean primary LC in left lung plus 2 oligo sites? 💙 Quote Link to comment Share on other sites More sharing options...
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