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Newly diagnosed with zero symptoms


zara1305

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This has all come as rather a shock to me as I just had a routine knee replacement surgery and after an X-ray it was found that I had a huge mass blocking off my right lung..... I had no problems breathing, played golf 5 times a week or so, no shortness of breath and always thought of myself as very healthy.  I was sent to a pulmonologist who did a botched Lung biopsy getting no viable evidence and telling me it was very advanced and to get my affairs in order.!!!! He scheduled me for a second biopsy with a needle through the lung, enough of this so I took myself to our local Cancer center and told them what had happened, the very next day I had a full team of professionals on my side.  After many more tests it was concluded that the tumor had cut off the side of my right lung and have now started Radiation 5 days a week and Chemotherapy .  I had my first Chemo last Monday and have been sick ever since to the point that I am not sure I want to continue if this is what life is going to be like.  I live alone and have had to call in friends to drive me as I have been so weak,  I have pills for sickness which work okay but then the constipation set in to the point of getting serious,  I am weak and find myself laying in my recliner just wanting to put an end to it all now.   My Daughter (she lives in another state as do all my children) won't let me give up till I have at least tried more treatments.  She found me this site as she feels if I can talk to others and we can relate it may help me.  In 2008 I watched my Husband go through these treatments but he did have a lot more going with Agent Orange!  

 

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Zara

First things first. What is your handicap?

Second....do not give up. You can power thru the Chemo. I know it sounds somewhat trite, but there are so many on this board who have gone through what you are now. In fact more than likely (and God willing) I will soon be going on my second Chemo journey.

What Chemo cocktail are you on? Have you clearly communicated your issues with your oncologist? Check what they are giving you prior to your infusion and let us all know what it is.

You have found the right forum to learn. Your doctors have most likely never been treated for cancer.  Many here have, and the rest have been caregivers. We know.

Try to fight thru it day by day. It will be over faster than you think.

Wishing you all the best and hoping you get back on the course soon. I am still hoping to play again soon as well. I am sure others will chime in sometime soon.

Peace

Tom

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Zara, first of all, I'm glad you ditched that pulmonologist and found a cancer center team. I have never been told by my doctors how long I have to live. My oncologist is a firm believer in hope. But as a practical matter, it's always a good idea to have your affairs in order. 

Believe me, I know how hard it is to go through treatments. I was very sick and too weak to drive. Rely on your friends, I'm sure they are happy to help. Even if you think you're being a burden, it will involve them in your fight to live. The American Cancer Society also has resources for cancer patients needing help. 

You will eventually feel better. It took me several months, and I've now pretty much resumed my pre-treatment life. Yes, I have occasional off days but in general I feel good.

Please be sure to tell your chemo nurse about all your symptoms. They've seen it all and can give you suggestions. Miralax works well for constipation. Radiation will make you fatigued so just rest and regain your strength. Be sure to stay hydrated. 

A lot has changed since 2008 when your husband was stricken. If you've had biomarker testing, you may benefit from immunotherapy or a targeted treatment (which I am on). It's keeping my adenocarcinoma stable one year after my diagnosis of advanced lung cancer.

You're in the darkest of times but there are better days ahead. Hang in there, you'll get through. 

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Hi, Zara.  I'm sorry to hear of your diagnosis but so glad you found this group.  Did you have biomarker testing done?  Did they find a mutation?

My grandparents lived in Mesa for more than 30 years.  We were supposed to visit family in Arizona over spring break before Covid.  I just love it there!

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I wanted to answer each one but not sure how to do that so I will just post here.  Thank you all for responding and giving a little hope.  I don't ask many questions as I know I will forget or not understand the answers,  I did tape on my phone the first Dr. who gave me zero hope!!!  I do relay all my symptoms to the head nurse each time and they are certainly very caring about it all even calling me at home to see how I am doing on a regular basis.  I have always been a strong person able to overcome anything but this has thrown me for a loopI don't think I mentioned I am 73 but have always been a go getter and active, to be confined to a recliner which I had to go and buy as I never owned one due to never sitting still long enough.  I am thinking maybe they overdid the steroids!!! I dread going through this again next week as I am still not over the last one!  My Doctors and Nurses are wonderful and so caring as are all the staff here at Banner Cancer Center in Mesa AZ.    I was told last week by my Dr. that this has probably been growing for 3 -4 years, has not spread anywhere else and he is confident that he can take care of it!!!!   I will listen to you all as you give me hope knowing you have all been here where I am now, I hope the day comes when I can reach out and give someone else hope!  Thank you all.   BTW, I am also a Veteran!

 

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Hi Zara: Glad you found our group. You made a great decision discarding the advise of you pulmonologist and finding a cancer center. First of all at 73  you are just a spring chicken compared to some of us and the fact that you are an active person will help you in the long run.  We are eager to help when we can but to do that we need to know more about your cancer.  That's why some of the posters ahead of me want to know. Again here are some of the questions you might ask your team. What type of cancer? Did they perform the biomarker testing and if so do you have any mutation? What is the name of the chemo/immunotherapy drug are you on? What type of radiation? Those answers will help us help you with side effects and other questions you might have. Again welcome to our group and best wishes.

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Hi there, and welcome. I'll chime in, too, as far as asking for details about your cancer, chemo, etc. 

Believe me, I sympathize about the constipation. One thing my nurse practitioner told me was to take the anti-nausea drug (I have scripts for both Zofran and Compazine--they told me the Compazine is less constipating) only when I begin to feel nauseated. So I cut way back on the number of doses because after three rounds of chemo and immunotherapy, I feel nauseated only 2-3 times within a week or so after the infusion. The other thing I started doing on the last round was taking Miralax starting 2 or 3 nights before my infusion and also drinking lots of water. This time, I had no constipation at all, which made me VERY happy.

It sounds like your cancer isn't very aggressive, so there's a lot of reason to be hopeful. The way you feel now isn't how you'll feel for the rest of your life.

 

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Welcome Zara!

Your experience exactly mirrors my first line treatment: six weeks (M-F) of daily radiation and weekly chemotherapy. I had a very large mass completely blocking the main stem bronchus of my right lung and the purpose of first line treatment was to shrink the mass to allow surgery to resect my lung. It was a good plan. The chemo/radiation did more than shrink my tumor, it eliminated it. However, a post surgical biopsy showed metastatic cancer cells in the tumor scar tissue. You might read the summary of my treatment in the footer of this post for further information.

Here is information I pass along to the newly diagnosed. It is my lessons learned on how to survive lung cancer and may be of some use and comfort. Most important at the outset is to understand that my diagnosis was in February 2003. I survived many treatments and recurrences. My point in mentioning this is if I can live, so can you. If you are an American Legion member, reach out to your post chaplain. Our post provides rides to folks with complicated medical problems and post members often attend sensitive medical consultations to act as a second set of ears.

Questions? This is the place!

Stay the course.

Tom

 

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Thank you Lexie. I will start asking more questions now and taping them. They said the constipation is from the high dosage of steroids I had for Chemo last week. When I get sick I only bring up a yellow fluid I call it poison. No actual food. 

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Well I wrote the questions down and asked them all, this is what I got,   Right upper lobe Non small cell Lung cancer 

RUL Adenocarcinoma,   stage 111 T4 N2MO  T-tumor size N=2 lymph nodes M= no metasteses

Carboplatin and Alimta every 21 days while getting radiationto you

Radiation is image guided radiation therapy

When done with treatment I may get a drug tailored to my genetic testing results 

Genetic testing results should be back in a week or so. 

Hopefully this makes sense to you!

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Yup, makes sense to me! I'm on Carboplatin+Alimta (both chemo drugs) AND Keytruda (an immunotherapy drug) every 21 days--after my 4th infusion this week they will eliminate the Carboplatin (which is the most toxic/hardest on the body) and continue me on Alimta + Keytruda as maintenance therapy (assuming my good response continues). Adenocarcinoma is the most common type of lung cancer--there are other forms of non-small-cell (several people here have squamous cell and a couple have "large cell"). 

I'm one of those people who doesn't have any specific mutations that are currently targetable. It's nice if you have them, but there are treatments that can work even if you don't have any. Sounds like you have a large-ish tumor, a couple of lymph nodes involved, but no further spread. It does sound like it's not super aggressive, which is good news. 

I have a feeling you will feel a LOT better once the radiation part is done. Radiation wasn't recommended for me due to how toxic it would have been, but for those who can get it, it can be super effective. 

Hang in there and keep us posted!

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Zara,

You're getting great counsel and already doing so many things well that I just wanted to jump in and welcome you to our family.  You can ask anything here and someone will have the experience to share with you.  My prayers for you are to go through your treatment with as little discomfort as possible.  Stay strong...

Lou

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On 11/17/2020 at 8:10 PM, zara1305 said:

Well I wrote the questions down and asked them all, this is what I got,   Right upper lobe Non small cell Lung cancer 

RUL Adenocarcinoma,   stage 111 T4 N2MO  T-tumor size N=2 lymph nodes M= no metasteses

Carboplatin and Alimta every 21 days while getting radiationto you

Radiation is image guided radiation therapy

When done with treatment I may get a drug tailored to my genetic testing results 

Genetic testing results should be back in a week or so. 

Hopefully this makes sense to you!

Hi Zara: Thank you for posting more details. I have two observations.\

1-And hope others will correct me if I am wrong. My oncologist insisted on waiting on the infusion till all the tests are done. Maybe I was an exception.

2- In my case, the size of the cancer in my right lung in the upper lobe was so big that the radiologist and oncologist could not see the details in the scan and I did not qualify for radiation. My cancer shrank by half after just 2 infusions and over 80% there after (I take Carboplatin, Alimta and Keytruda). I don't want to give you false hope but in my case the size of the cancer did not matter. Stay hopeful and good luck.

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They said the size was 6cm and that is why they were afraid at first it may have spread as anything over a 3 usually does.  I am lucky it did not. I may be wrong on my CM or MM not a metric person.   Another question I have is about the sickness.  I decided to throw up when I felt sick rather than take the sickness pill as all it was was a thickish yellow bile that looked like poison!  Is it not better to get that out of your system than keep it in??  No food ever came up!

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The size of your cancer is smaller than mine and I am making good progress. I could not even qualify for Radiotherapy like you did. Keep your hopes high and good things should come. Don't hesitate to ask questions when in doubt and maybe one of us has the experience to answer. Best of luck!

 

 

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According to my docs, you should take the anti-nausea meds at the first sign of nausea--once it starts, it's likely to continue. Plus there is an element of conditioned reflex, where you associate certain foods with nausea. Nausea/vomiting leads to weight loss, which is NOT GOOD for cancer patients.

I'm also told that bodily fluids are toxic for only 48 hours after infusion. Remember, you're getting the drugs via IV infusion, not by mouth. Your stomach contents are no more poisonous than any other bodily fluid--I was instructed to be careful of urine and blood, and to wash any underwear separately that was worn during those 48 hours. I don't think you're helping yourself by vomiting, and you are potentially harming yourself. If you want to flush out the meds faster, drink lots of water. But don't make yourself sick.

Oh, and I'm pretty sure it's 6 cm, not mm--a 6 mm nodule is TINY--about the size of a pencil eraser--and not likely to have spread based on size. A cm is 10 times the size of a mm, so yeah, a 6 cm mass is big, though not huge. A tumor 3 cm or less is called a nodule; one over 3 cm is called a mass.

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Thanks good info. I am so new to this  will have my 2nd Chemo next week. Yes my mass is big and blocking my right lung. Was told it has been growing for 3-4 years at least.  Have had a few other surgeries and never had a chest X-ray, maybe it could have been caught sooner.   Just a fluke it was found this time due to knee replacement 

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Hey Zara, welcome to the forum. Stay positive! My mum was diagnosed with T4 N2 M0 in Feb and now she is NED! Don't let a negative doctor put you off. There's been a lot of advances in treating lung cancer. My mum's consultants said that 10-15 years ago, it would have been a very bad prognosis but now there's been a lot of advances in treating lung cancer. There are even people with stage 4 who have been living with cancer for years and are stable. You'll probably come across of a few of them on here. Also Tom is a good example of beating stage 3 lung cancer even before advances in treatment. Don't give up and keep on fighting. Treatments aren't always pleasant and my mum has suffered a lot, almost wanted to give up but unfortunately nothing in life comes easy. You have to grab any chance to get better by the balls. Even if it's GD! hard.

You've come to the right place. There's so much positivity on here and the people on here give great advise. Unfortunately I'm not from the US and don't really know how the system works when it comes to doctors and healthcare, but others here will be able to advise you. I hope that you have a good medical team that believe in you. If not, find another. My mum was having problems with one of her doctors. She complained and switched to another doctor and it's the best thing that she could have done. Her previous doctor was inexperience and only filled her mind with worry and doubt. The new doc is much much better.

Lots of love from London, England x

P.S: My mum was and is being treated with curative intent and she is/was stage IIIB. Americans don't use the term "cure", but in other words it means surviving and even if cancer returns, doctors can treat it again and you can be NED again. Hopefully it won't return, but with any cancer it's a possibility but it doesn't mean the worst. Many people have multiple recurrences of cancer and beat it. Have you been told about immunotherapy? Ask your medical team if you may be eligible for it.

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So sorry to hear about your diagnosis but I'm glad you found this forum. Trust when I say everyone is here to help. They're so knowledgeable and caring. They kept me from crashing when I got diagnosed, so please dont hesitate to hold back if you need to do any venting. I will continue to hold you in my prayers along with everyone else. Most of all, stay strong and dont give up!

Sam

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Hi Cat Lady,  I am from Oxford, England, born and raised but came to the States many years ago.  My Sister tells me I am better off over here for treatment as she does not have a lot of faith in the NHS.   I certainly do have a great team working with me here in AZ at the Banner "Anderson" cancer hospital.    For one reason or another I have not been able to get home since 2000 but dream of our food daily, LOL.  I restricted my travel days when I got an abused rescue, I am the only one he trusts and can't leave him with anyone, he is only 4 so I have to live a long time to see his time completed!!!  Thanks for responding, seems like a great bunch of people on here!

 

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I was also diagnosed shortly after "Hip replacement surgery" and all my pre-ops for my surgery were fine including a chest xray and two more that were done after surgery when they thought I had post op pneumonia, which I never really had.

Four weeks later I had a very sudden onset of Neuro changes which we first though was vertigo after the worsened my PCP sent me for an urgent Head CT Scan and they found a brain tumor and that lead to more testing and my diagnosis of Stage IV NSCLC, the brain met and a pulmonary embolism without any symptoms except those two days of neuro changes?  No chest pain, no breathing problems, no back pain NOTHING that you would like I'd have for Lung Cancer and PE?  

  Lisa

 

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