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Vel

My Story

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Hi my name is Vel, and here is  my story. I am a 25 year stage 4 Breast Cancer Survivor. I just recently lost my husband after battling End Stage Renal Disease (Kidney Failure) for 10 years (average lifespan for dialysis patients is 3-5 years). I was his caregiver for all of it. The last 4 years I went to school so I could do his Hemo Dialysis at home, to give him a better chance of survival. The last 2 years he developed 3 different forms of dementia. Anyway it was a long hard battle. We had 1 child, a daughter, she is so much more devastated over her father's death then she thought she would be.

On December 28th I had a CT Scan on my throat to check my thyroid, I saw my doctor on Jan 8th, for the results, they have found a 6 mm nodule in my upper right lung. Because of my own personal history of cancer, I had a lung CT Scan yesterday with contrast. I don't think my daughter would survive loosing me too, so soon, after loosing her dad.

I feel because of my past history they should go in and remove the 6 mm nodule that they found and biopsy it. Is that even feasible? Is 6 mm large enough for them to go in and go after?  I am basing this on the hopes that there is only the one nodule in my lung. What should I look for my doctors to do for the next step? I want them to be as aggressive as they have to be to either make sure it's not cancer or give me the best chances of survival if it is cancer. Like I said my biggest fear is how this will affect my daughter.

I myself can and will deal with whatever I have to. I just not sure what happens next after I get the results of this CT Scan I had yesterday, and what questions, I need to ask, and what should I expect from my doctor, to do next.

So many questions floating through my head, and no where for them to go yet. I hate waiting, I always have, even the first time I had to travel down the Cancer Road, the waiting is what drives people nuts.

Thanks for reading and any help/insight you might be able to give me.

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Hi Vel, welcome here.

I'm very sorry for the loss of your husband and for your daughter's struggles with it.  I am a daughter of a mother with NSCLC, I can understand with your daughter is going through as my mom's cancer diagnosis has made me begin to think about my parents aging and ill health.  And I think you have the same ideals behind the waiting game - it's horrible and I agree that it is what drove my family and I nuts (well maybe we were a little nuts to begin with!).  

So, as far as diagnosing, biopsies, etc, I will first tell you that I am not an expert when it come to all of the different types of biopsies.  I will also tell you that people tend to complete the different stages of diagnosis and staging in different sequences.  So I will share my mom's initial diagnosis steps....

Nodules were found by a CT. They were small (I don't remember the size), so they were watched for a few months.  A follow up scan showed they had changed size, so they did a needle biopsy of the nodules.  There are several different kinds of biopsies - some less invasive than others and differing types of biopsies can be recommended based on the nodules size and location.  Needle biopsy was no big deal for my mom.  Biopsy results showed NSCLC.  She then had a PET scan done to see if the cancer was any place else in the body.  Some people have a PET scan before the biopsy.  Either way results in diagnosis.  

There is a  possibility that your CT with contrast will not show a nodule, this has happened to my mom before.  In fact, her NSCLC recurrence is on the back of her trachea and isn't even visible to a regular CT.  I think you made a great call in having a CT with contrast.  And finally, even if you do have a nodule, it does not mean it is cancerous. 

I really hope you do not become a part of the lung cancer "club", but if you do, you will find that many of the questions that are floating through your mind can be answered on this forum.  There are many survivors with years of personal knowledge that were so helpful to me when my mom was first diagnosed with her recurrence.  Voices of hope and reason were really what I needed (and still need at times!).  I am sure you will hear from some of the lung cancer warriors soon.

Take Care,

Steff

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Vel,

Six millimeters is indeed small. To get an idea of how small, it compares to the circumference of an eraser on a wood lead pencil. But, given your history, it should concern you.  First, let's assume the nodule is not a problem.  There are many kinds of nodules that are not a medical concern.  Here is my go-to resource for pulmonary nodules. 

Problem or not, likely given your history of cancer, doctors are going to want to ensure it is not metastatic disease.  This determination requires a tissue sample normally obtained by performing a biopsy.  One of the common ways lung tumors are examined is by performing a needle biopsy.  But, your nodule is small and depending on its location, may proved to be a difficult target to hit with a needle.  Likely, your doctor may recommend a watch and wait period to see if it changes size or shape.  A CT with contrast is usually used to make this determination and the results of the test you had yesterday may help clarify the situation.  But, if it is just one small nodule, the CT may not convey a lot of information.  More small nodules may be found but again there are many types of non malignant nodules.  Doctors may decide to use a PET scan to check for metastatic disease and to see if there are other areas in your body that show-up as metastatic.  But PET scans are difficult to interrupt for small nodules.  Here is more information on imaging commonly used in lung cancer screening. 

So, with small nodules, you may be in a observe and wait mode.  Questions to ask?  Does the location of the already discovered nodule permit a needle biopsy?  Is the discovered nodule large enough to biopsy with a needle? Is the discovered nodule in a location to be biopsied by bronchoscopy? Is the discovered nodule large enough to biopsy with a needle? If yesterday's CT shows more nodules, I'd ask: should I have a PET scan? If yesterday's CT still shows only the single small nodule, I'd ask: are there any appearance or growth indicators of metastatic disease shown by the image? If the doctor recommends waiting and further CT testing after some period (likely 6 months), I'd ask: what is the risk of a six month delay if the discovered nodule proves metastatic? 

Waiting does indeed drive us nuts.  I call is Scanziety....

Stay the course.

Tom

 

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Thank you very much Tom, for such an informative answer, after reading your links, thought i better share a little more info. I am a smoker for 51 years, which is what has my doctor concerned, plus the previous cancer and the fact that cancer runs really heavy on both sides of the family tree from brain cancer all the way down, any place that cancer can grow. So lots of concern and like you said lots of "scanziety". Waiting 6 months with a wait and see attitude is what worries me the most. If they had waited that long with my breast cancer i would have been dead, I had atypical medullary carcinoma with multi foci and lymph node involvement. So any wait and see attitude will definitely drive me "nuts". I pulled my old reports (yes i still have them after 25 years). "There is nothing on this exam in the breasts that would indicate malignancy from the breast." They also suggested a wait and see attitude. Within 2 weeks after that report the tumor had grown so large you could actually see the outline of it on my breast. It was fast moving and that is what scares me. I just want it out if it is a single nodule, I really don't believe in "wait and see". 

And to answer every one's thoughts yes i was more then stupid to continue smoking,  I had already decided to quit when my husband died, and I had just bought the smoking patches to help me quit before I even knew something may be wrong just last month. 

Anyway Tom, thanks again for all the info. I guess I will just have to "wait" and see.

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Hi Vel, ( my spell check is changing this to "well", but I think Vel is right)

I don't have much to add to what Steff and Tom have said, but I'll share a little of my experience with you. In  2008 I wes treated for Stage 1 breast cancer. IN 2011, I was diagnosed with and treated for Stage 3 Cervical/Endometrial cancer, clear cell, a rare and aggressive type. In a routine CT  in 2016  for surveillance for the gyn cancer, a small nodule was found in my right lung. I agreed to a 3 months "wait and see" and at the end of the 3 months it had grown slightly. I had a PET scan and it didn't light up at all. I understand that some small slow growing cancers don't show up on P.ET. From the appearance of the CT, the doctors didn't think it was a metastasis from one of my other cancers--apparently those are more rounded/smooth and often more than one- this was a single and branched or ragged-edged one. They thought it could be a primary lung cancer, although there were other possibilites also. Because of the location, it couldn't be biopsied by needle or by broncoscope. I had a lobectomy ln November 2016 and it did turn out to be adenocarcinoma, Stage 1.  I didn't need futher treatment. I will have CTs every 6 months for 5 years.

I hope you don't have lung cancer.  If you do, it's survivable and it's good that it was found when it was small. About smoking, everybody knows it a risk factor. However, people on this forum aren't  generally judgmental about it. We've probably all done stuff that's against medical advice. Anybody can get lung cancer, and we're all in this together. (BTW, I've never been a smoker).

Bridget O

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Vel,

Smoker, former smoker, or not, you are welcome here.  We do not judge people about anything.  All are welcome; the only condition for membership in the forum is possessing lungs.  So you qualify.

I am not a breast cancer expert, but my reading suggests many forms of breast cancer rapidly spread (metastasize).  I try and avoid generalizations about lung cancer because everyone is different.  My recipe for lung cancer, non-small cell Squamous cell lung cancer, is generally thought to be slow growing.  In January, I had a chest x ray to diagnose broken ribs.  Nothing showed on the x ray but broken ribs.  A month later I was coughing up blood and a chest x ray disclosed a tumor that was nearly 3 inches long and 1/2 inch in diameter.  So my slow growing variety grew very quickly.  It did not however spread until after my right lung was surgically removed.  I believe it spread because of the year's worth of follow up surgeries prohibited me from receiving post surgical chemotherapy, normally a standard of care for my disease.

Ask your doctor to carefully explain the risk of delay and smoking history may increase that risk.  At this point in time, your doctor agreeing a biopsy is needed and possible may be a Scanziety lowering course of action.  

Stay the course.

Tom  

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Hi, Vel,

My nodules (three, I believe) were first found as a result of screening.  When nothing had changed after three months, I was told to come back in a year.  When I did, ONE of the nodules had grown just a bit, and also had a suspicious appearance.  A PET-CT showed only that one nodule lighting up, and as a result, I had the tumor (and the lobe) removed.  In all that time, the tumor grew very slowly.  

Now, as Tom points out, there are a lot of different lung cancers, and some move more quickly.  The point is that, as he said, most nodules are NOT cancer (my other nodules are sitting there doing nothing at the moment, though they will continue to monitor them).  And many cancers do not grow VERY fast, with continued monitoring being sufficient to keep an eye on things.

I was a longtime smoker, too--over 40 years, most of that over two packs a day.  What's done is done--but nobody asks to have cancer.  

I think you've gotten some really good advice from the others here.  Insist that all your concerns are addressed and all your questions answered.  Just know that if the recommendation is to continue to monitor the situation, that is not an unreasonable course of action.  

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Hi Everyone,

Thanks so much for all the information and support, as you all know from your own experiences, scary times right now. I received the report from my CT Scan w/o and w contrast from Jan. 9th. Now maybe one of you can interpret the last part for me. It is all good news except for the Impression.

Findings:

Lungs and pleura: Lungs clear. No effusions. Few scattered fibrotic changes.

Mediastinum: No Masses

Lymph nodes: No adenopathy

Heart: Normal in size. No pericardial effusion

Aorta and great vessels: No aneurysm or dissection.

Osseous structures: No acute fracture or destructive lesion

Upper abdomen: Portions of the abdomen included are normal. Status post cholecystectomy

Surgical clips in left axilla

Impression:

No acute process.

 

Now does all this mean they didn't find the 6 mm nodule on this CT or that there is no change on the one that they found on the first CT Scan?

Otherwise, everything else is all normal. Which is fantastic news. I very happy, but I am still concerned now,  is there a nodule in my upper right lung or isn't there.

Thanks for all the support and information, it has been a tremendous help.

The other update is I used my first quit smoking patch yesterday and so far so good, I haven't given in to the cravings. Like Tom likes to say "Stay the Course". I really want to succeed this time.

 

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Vel,

I'm trying to give a complete answer but it is difficult reconstructing your scan timeline.  You stated a 28 December scan to check your thyroid and that reported your 6 mm nodule.  Here is the confusion.  You wrote you "received the report from my CT Scan w/o and w contrast from Jan. 9th." Is the Jan 9 scan with or without contrast? If it was without contrast, then the finding "few fibrotic changes" is pointing to idiopathic pulmonary fibrosis.  Here is more information about pulmonary fibrosis. From the wording "few and scattered" I don't think points to a significant pulmonary fibrosis problem. But I'm not a doctor so keep that in mind.

But, I don't see information on the Jan 9 report that indicates any nodule.  However, keep in mind if the test was done without contrast, the lack of contrast makes it difficult to see nodules.  Moreover, your nodule is small and in my history, small nodules appeared and disappeared from scan to scan. The words "no acute process" are positive and comforting as far as this scan can be interpreted without contrast.

I found the will to stop smoking and went through gum and patches that didn't really help.  I was strongly addicted to nicotine and nicotine substitutes just continued to feed my addiction and I would up smoking again. I had success from cold turkey.  It was a nightmare but I was diagnosed with lung cancer smoke free.  I'm glad I didn't need to experience lung cancer treatment with nicotine addition withdraw symptoms.  That would have been misery and agony in the extreme.

Stay the course.

Tom

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Hi Vel,

The CT results sound good, Tom has an importand question about the contrast. Do you have a pulmonologist? My pulmonologist sat down with me and looked at the  CT images,not just the report. She could tell a lot from looking at them and it was very helpful to me in understanding what was (and was not) happening.

Bridget O

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The scan on Monday Jan 9th was done with and without contrast both, as was the original scan done on Dec 28th. I don't have a pulmonologist , all this has been done through my regular PC Doctor. 

So maybe because of the angle of the 2nd CT scan the nodule didn't show? or were they mistaken on the first one? LOL still no answers but thank you everyone for your patience.

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I echo Bridget's suggestion about a pulmonologist - my mom's pulmonologist reads CT's better than her oncology doc.  He was the one who found that the cancer had returned (or possibly never left) on her 1 year post treatment scan where her oncologist gave her the "all clear".  Neither the person who gives the impression of the scan or the oncology doc ever saw it.  We don't even consider any news CT's until we speak to the pulmonologist.  

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I think your doctor would have to explain the radiology report (and I agree about consulting a pulmonologist--I had one interpreting my screening scans).  And whether they identify a nodule or not, given the smoking history (and good for you for your step toward quitting!), annual low-dose CT scans of the screening variety are probably a good idea.  That's how my cancer was found and quickly treated.  

I quit smoking by switching to e-cigarettes.  I haven't had a "real" cigarette in two years, and I've reduced the nicotine content of mine to 0.3 percent (starting at 1.8 percent).  None of my doctors has expressed any concern about the e-cigs.  Nicotine doesn't cause cancer.  There is, however, some suggestion that nicotine MIGHT make it easier for tumors to grow, hence my working toward eliminating it.  I never had any success with patches, pills, or cold turkey.  But if you can quit entirely that way--or any other way--go for it.  Your lungs will be the happier for it.  And frankly, if it was a matter of smoking or getting your nicotine some other way, you're much better off, IMO, doing whatever it takes to avoid inhaling burning tobacco.

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Vel,

One more thing, no answers is a pretty typical state for a lung cancer survivor.  We wait and wait, then often get uncertainty as an answer to a scan.  Then we wait some more.  Lung cancer requires patience, a trait that I have yet to demonstrate....

Stay the course.

Tom

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