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Mom Just Diagnosed

Kiera626
Posts: 1
Joined: Jun 2019

My mom has just been diagnosed with lung cancer.  She had fluid removed via thoracentesis, which tested positive for metastatic disease.  We lost my father 14 years ago to a massive stroke and the fear of losing my mom is crippling me right now.  I am being strong for her, but breaking down often when I'm alone.  I try to live my life being the ultimate optimist, but it feels wrong to be hopeful right now when things are so scary and serious and unknown.  I find myself trying to do research online and what I am reading terrifies me.  Does anyone have any advice or hopeful stories that they can share?  It's just me and my mom, as family lives very far away and I will be the sole/primary caregiver.  I need to keep myself positive so I can be the best support system for my mom.  Thank you in advance and God Bless you all who are making your way through this journey as well.

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

I know how it feels to be so scared to lose someone you love so much. Please try to not google. Any of the information you have found is not specific to your mom's situation. Only her dr can speak to exactly what her status is and what kind of treatment can help her. Please know that treatment improves almost daily. My husband was given 8 months to live when he was diagnosed in April 2014. Instead of losing him, eight months later he was declared cancer free. He defied all those stats and articles on the internet. Stand by each other. This is the time to talk to each other and not hide from one another.

jennerrator's picture
jennerrator
Posts: 9
Joined: Apr 2019

I've gone through lung and brain cancer and not once read about it.......just as she said..we are all different and yes, times have changed and way more of us hanging in there!!

 Just stay positive and she will feed from that...always a blessing to be that way or have a close one that is!!!

joey2019
Posts: 2
Joined: Jun 2019

I was diagnosed with lung cancer on May 2nd of this year. Then it all began. The scans, all the doctors, all the tests. My world went upside down in a day. Please Please do not google too much.Knowing some,I think is okay, especially when you are going to be the caretaker. Just don't take it too far. It will only scare you more. Just take each day as it comes. I will be easier on you and your Mom both. Much easier to handle in small doses. Otherwise it will just overwhelm you. I know how scared you are!! Reach out to some friends. You need support just as much as your Mom does. That isn't being selfish. You need it to get through this and it will make it easier. I promise!!!

Not wrong to be hopeful at all Kiera!! Hope and faith is what we trust in this. First you make sure that you are okay, then you will be better able to help your Mom. If she see's you are scared, she will be even more scared.

God Bless you. I am here for anything I can help you with. Robin

jorola's picture
jorola
Posts: 237
Joined: Mar 2016

like csn, cancer.net, the Mayo Clinic, Cleveland Clinic, etc.

Learning about your condition/illness is a good thing. You should get informed.What I was meaning to say before was just do not get hung up on the stats as most of them are based on treatment and research that is 5 or even 10 years old. With the ever changing treatment these old numbers are no longer relevant.

Nurse_Jeni's picture
Nurse_Jeni
Posts: 8
Joined: Mar 2017

My name is Jeni, I'm 54 (yay I made it!) And I was diagnosed with stage IV adenocarcinoma of the lung in January this year. But that wasn't the start of my story so I will rewind to November 2016 when I started having problems. I started losing weight, 18kgs in a few months, and had a scree of other symptoms, which turned out to be caused by hyperthyroidism, but during tests to find out what was happening, my doctor ordered a CEA ( a blood test for carcinoembryonic antigen a hormone sometimes released by some tumours, usually bowel but not always). My CEA was 10 (normal for me at the time was <5), my doctor decided to monitor it every three months and the next test was still 10, I was worried but no one else was. My third CEA was 15 and there after it at least doubled each time. I had a chest xray- normal, bowel screen- normal,  mammogram- normal, PAP test - normal, gastroscopy/ colonoscopy, ultrasounds of neck, abdomen and pelvis, CT scans with contrast and even a whole body bone scan all normal. When my CEA hit almost 300 my GP referred me to a gynaecologist who in turn referred me to an oncologist and that is where there really scary stuff started. This was the end of August 2018 almost 2 years where I pretty much knew something was going on but didn't know what and nor did anyone else. My oncologist, who is a totally amazing and wonderful doctor and person, sent me for a PET scan..... I had a small primary tumour in my right upper lobe of my lungs, a suspicious lymph node in my retrocrural region (under the diaphragm nestled against major blood vessels and nerves) and an unusual pooling in my left kidney. At the end of September 2018 I had a wedge rescetion of my right lung apex as a biopsy which came back as adenocarcinoma of the lung <1.5cm adhered to the pleura but not through it and no infiltration, even though I had no lymph nodes tested it was considered to be stage 1b, could be worse I thought..  My oncologist said we would do another PET scan 6 weeks post surgery where she hoped the lymph node would prove to be inflammatory and be gone and we would then look at the kidney, if everything went to plan I would have a lobectomy and then be monitored with no chemo, sounded a bit scary but again it could have been worse, it was. My PET showed the node was still there and it wasn't good and now both my kidneys were showing unusual pooling. I had 2 more renal ultrasounds- both normal so I was sent for another renal scan called a DTP scan to see if they could replicate what was showing on the PET scan, if it had then it would have meant my kidneys just pooled that way, they didn't. The saga continued and I had a kidney biopsy on the 24th of December 2018 (great christmas pressent), when my results were due my wonderful oncologist was away on leave and I saw the other senior oncologist to get the results and this is where my world seemed to come tumbling down around me. In early January this year the oncologist told me that my stage 1b lung cancer had metastasized to both my kidneys and that the lymph node was therefore most likely the same, I had stage 4 adenocarcinoma of the lung. I asked about prognosis and he told me not to just take the numbers home with me (hmmm he didn't give me much else to take home) but gave me 6 to 18 months and told me the only treatment they could offer was palliative,  my tumour didn't test well for immunotherapy (less than 0.01%) and he went on to mention many people in my situation refuse treatment because of quality of time left issues. I suspect he had had a bad day as I was the last appointment and he was running very late, he also may not have realised that I had no symptoms and had had complete excision of my lung tumour. Any way my husband and I left the doctors that day totally devastated. I almost decided not to try treatment but I had a 16yo son and an 18yo son who I needed to fight for,  thank goodness. My next appointment was with my own oncologist and she was like a breath of fresh air,  so positive that we would get some extra time and that I would tolerate chemo very well due to my general health and age. My presentation was extremely unusual as I had no mets in my brain, bones or liver, just in lymph and kidneys (almost unheard of). So in late January I started my chemo with Carboplatin and Pemetrexid infusion followed by 3 weeks recovery, I accepted the used of a cooling cap (unusual torture device aimed at saving my hair which it did) and the worst thing about the treatment was when the dexamethasone I had to have for 4 days around the infusion was stopped, each time I had a couple of really bad days to go through but I got through them. I must be supremely lucky as I didn't have any other really bad reactions apart from a small leak of chemo to my left hand which did land me in hospital 7 weeks later with a horrendous infection. My liver really didn't like the chemo with my liver enzymes going high and staying there despite me not taking any paracetamol or drinking any alcohol and my kidney functions went below normal and stayed there, once causing the need for a change of dose. But wait there's more.... after 4 cycles of chemo my CEA was 704 and my PET showed minimal if any shrinkage and two new minute nodes.  I was horrified when I was told I wouldn't be getting my promised 6 cycles, I had failed chemo, I thought. My oncologist wanted to start me on immunotherapy! I thought my tumour wasn't suitable! My oncologist explained that chemo can change a tumours susceptibility to immunotherapy and she had a feeling it would work, tumours can apparently change even without chemo. So I started 3 weekly cycles with (spelling is dubious on this one) atezolizumab or something like that. 1 week after starting immunotherapy I thought I had pulled a muscle just under my rib but it turned into excruciating pain making it very hard to breathe, I thought my right kidney must be dying but after 3 separate trips to hospital (2 in ambulances) I was admitted with a diagnosis of a clot in my right lung at the base along with consolidation and an effusion (collection of fluid, probably because I could barely breatth for three days). I am a nurse so I got out of hospital asap on blood thinner injections daily. A week later I was back in hospital with high temperatures no immunity and a haemoglobin that could have needed a transfusion,  after 6 days I was discharged still with a temp but it was improving. I missed getting my CEA level done because they didn't know to do it in hospital so I just had my second cycle of immunotherapy a few days after getting out of hospital.  No reactions this time but I had some weird nerve things going on itches and aches but nothing severe so they told me it was the chemo's last hurrah. This tale is catching up to the present we are 9 weeks back or so from now, I had the correct bloods done before my 3rd cycle of immunotherapy and I have a clinic appointment before each cycle, my oncologist had a big grin on her face as she weighed me on the way into clinic and when we got into her rooms she told me she had a big surprise for me, I asked if my liver and kidney functions were normal and she said no, just let me show you this, well this was a graph of my CEA which showed the exponential rise and a very sudden a extremely steep drop!! The hormone my tumour loved to secrete had dropped from 704 down to 31 in 6 weeks, two cycles, we were both squealing and clapping tears in our eyes. It was a good sign but I needed confirmation and I was due for a PET scan again (my oncologist was going on maternity leave in two weeks so she offered to bring the scan forward a week so she could give me the results). I had my PET scan a week ago last Monday and got called in by the reporting doctor, gulp, there was obviously something wrong with my lungs as she questioned me about the clot and xrays taken since but she didn't say what it was and I was too scared to ask. Luckily for me my oncologist rang the next day and asked if I was deliberately trying to make her deliver her baby early lol she had had a phone call from the doc who reported the PET scan saying I had a case of pneumonitis (inflammed lungs secondary to the immunotherapy) apparently my doc said okay but what about the lymph nodes and kidneys? The reply was there is nothing there, no cancer at all anywhere. I had another CT scan the next day to confirm it was pneumonitis (which is treatable) and today I had an appointment with the clinical nurse consultant who will oversee treatment of the inflammation. I never gave up hope even when all hope seemed lost, I had a motto.... I'll just keep living till I'm not  and worry when you have something actual to worry about not what might be, I know the last is sooo hard but attitude does help and being positive is essential never give up! Sorry this was so long but I truly hope it helps, they are getting the most amazing results with lots of new treatments and what was incurrable just months ago is now being successfully treated.  I went over 2 years not being treated because we couldn't find the cancer and today I am in remission, I don't say cured far too early for that but I know there is always hope.

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