Growing nodules and enlarged lymph nodes,

[cwish23]

Hi all,

I'm not very patiently waiting for a biopsy of a few nodules.  Last year in may, I went to my obgyn to discuss pretty severe night and day sweating, assuming it was hormonal, even though  I  was only 35 at the time. It wasn't my hormones, but that started a journey which has lead to a CT scan in October that identified some spiculated nodules in my lungs, 12mm being the largest.  I had my follow up ct scan a few weeks ago and they found that the nodules had all grown, doubling in volume. In addition to that, my mediastinal lymph nodes were enlarged. 

I had a pet scan last week. The mediastinal, bilateral pulmonary hila, portacaval, and periportal lymph nodes were all noted as enlarged and "intensely hypermetabolic" with SUV values ranging from 7.8-10.7 and one of the lymph nodes measuring 2.2x.9 cm.

The largest lung nodule has an SUV value of 6.8, the next was 3.2, followed by the smallest at 3.0. 

I'm really hoping for a sarcoidosis diagnosis but I'm afraid that may just be wishful thinking.  I know you aren't medical professionals and this isn't a place for diagnoses, but has anyone had similar imaging results without a cancer diagnosis? 

[Tom Galli]

Cwish,

Anyone with similar imaging results without a cancer diagnosis? Not that I know of. The PET scan SUVs are pretty conclusive. You said lungs, did you mean you had nodules in each lung?

The node SUVs and physical enlargement are significant. One lung nodule (6.8) is also. Others (3.2 & 3.0) are borderline but likely metastatic based on node uptakes. 

And right, I’m not a doctor but have had a multitude of CT and PET scans in 15 years of life after diagnosis and treatment. 

Are you seeing a medical oncologist? Has your doctor staged you yet?

No doubt you’ll have questions after biopsy results and this is a good place for answers. 

Stay the course. 

Tom

 

[cwish23]

Hi Tom, thanks for the response.  The bigger nodule is in my left lung, the smaller ones are in my right lung.  I am only working with a  pulmonologist right now.  I am supposed to have a biopsy, but maybe that plan will change after my pet scan results? 

It feels like this has all taken SO long.  Now I'm curious to see if my pulmonologist goes forward with the biopsy or refers me. 

 

Oh, and I haven't been staged or even diagnosed yet, which is what is driving me crazy. 

[LexieCat]

Hi, and welcome.

They can't "officially" diagnose you without a biopsy or pathology results, but I agree with Tom, it sure looks like lung cancer.  You will need a biopsy to determine what type of cancer it is.  If possible, you should also have the tumor(s) (assuming that's what they are) tested for molecular markers.  This information will help the doctors figure out what's likely to be the most effective treatment plan.  Lung cancer comes in a lot of different "flavors" and the treatment depends on the type and stage.  

The good news is we have several members here with advanced cancers who are doing well.  

I hope you get a treatment plan in place soon.  Waiting for tests, results, appointments, etc., is definitely one of the hardest aspects of this deal at this stage of the game.

[Tom Galli]

Cwish,

You’ll need a medical oncologist to design a treatment plan. Suggest you start looking for one while waiting for biopsy results. 

Stay the course. 

Tom

[cwish23]

Thanks to both of you.  

[BridgetO]

hi and welcome.  It's my understanding that nodules from sarcoidosis can light up a PET scan. (I'm not a medical professional so I could be off n this). However, I think that spiculated nodules are more typlical of lung cancer. Please let us know when you get your biopsy results, whatever they show.

Bridget O

[Lisa L]

Hi I also have a 9mm spiculated nodule that they found on a random ct scan middle of Dec.  I was sent for a PET/ct scan 3 weeks later, nothing lit up, nodule same size, finally got into my pulmonologist middle of Feb.  and because the PET didn’t light up I’m waiting the 3 months for follow ct in April.  The wait is killing me and I’m imagining the worst.  My pulm doc did say this is just protocol for nodules because 50% of people that get a ct Scan have them and yes the word spiculated not so good but I am finding other things can cause a spiculated appearance and also my pulm doc didn’t think it looked spiculated, so when they first found the nodules did you get a pet scan?  Or did they order that after the 3 month or 6 month rescan?  I’m actually trying not to think about this too much and have my feet in the sand for a little vaca but when I read your story I wanted to reach out and just say your not alone and everybody on this site is so amazing.  

Lisa 

[cwish23]

Lisa, the pet scan was ordered after the spots had grown on my follow up scan.  I put my head in the sand between my appointments as well.  Three months (or more)  is a long time to live on pins and needles.  Hope your April scan stays unchanged. 

Thanks Bridget, I've read the same about sarcoidosis so, I'm keeping my fingers crossed while I wait. They did the ACE blood test for sarcoidosis, as well as a test for tb, rheumatoid  arthritis, and several fungal infections, all of which were negative.  However, my white blood cell counts are high, as well as my inflammatory markers. I've read that you can have sarcoidosis with negative ace test so, maybe I'll be one of those. 

[ColleenRae]

cwish ~ Welcome to this wonderful site.  I wish I had found this forum when I first learned I had lung nodules; it would have been very helpful. Lung nodules discovered Dec 2016; watched, waited and had regular CT scans. One nodule did not grow in size but became more dense. I opted to move forward with surgery.  Right upper lung removed via VATS in October 2018 for an 8mm nodule that looked suspicious but could not be biopsied but lit up after PET/CT. It was malignant, so lobectomy was the right / best choice to make in my circumstance.

You sound very educated regarding what you might be facing and being pro-active is essential, I believe, in facing issues like this.  Your involvement and the tests you are having done show that you are ready to fight this - whatever it may be.  I was very worried when I first learned I had multiple nodules and immediately tried to find where I could go for treatment (if needed), second, third and, yes, fourth opinions.  If you live near a cancer center, I would highly recommend making contact with them (or asking your pulmonologist or PCP for a referral).  I sought different opinions not so much because I was hoping someone would tell me something new, or something I wanted to hear... they were all pretty much in agreement as to what my course of action should be.. but because I needed to feel comfortable with who was treating me, where I would have surgery, etc.  All of this took time. I was advised that my next step should be surgery in July 2018; I had surgery that October.  I spent those 3 months preparing / educating myself as best as I could.

Please keep all informed here and keep coming back... There are amazing, helpful,  intelligent people here to support you.

Colleen

[cwish23]

Thanks all.  I'm trying to be as educated and involved as possible. It's taken a ton of effort and pushing on my part to get anyone to listen to me saying something is wrong.  I got a lot of pushback but I'm glad I've preserved.  

I'm still waiting on the dr to call to schedule the biopsy. They've had the results for several days and I've called and sent messages asking them to call me and crickets.  So frustrating! 

[Curt]

Navigating the medical world can be very frustrating.  It’s the perfect storm of overworked doctors, strict rules governing what they do and when and difficult insurance companies.  It sounds like you are already advocating for yourself and being proactive in the process.  Both are important and can help with the long term outcome.  Stay positive and vent as much as you need to here   We’ve all been through it at one level or another.   

 

 

 

[cwish23]

My dr called today, thankfully. He wants me to have a mediastinoscopy instead of a bronchoscopy, which means they'll only be doing a biopsy of the lymph nodes, not the actual lung nodules. He said the lymph nodes will tell them what they need to know.  I'm surprised that they don't need a sample from the actual nodule. Is this the norm when there are lung nodules and active lymph nodes? 

[LexieCat]

If the lymph nodes are cancerous, then one or more of the nodules are, too.  If the lymph nodes are negative, then they will still have to figure out what's going on with the lung nodules.  I think the reasoning probably is that if the lymph nodes are cancerous, then you've already got metastasis and will be needing radiation or chemo (or both) rather than surgery.  IOW, they want to rule out the more serious possibility first.  And probably trying to avoid putting you through multiple procedures if possible.

[Tom Galli]

cwish,

Actually it is pretty good doctoring. The PET showed the highest SUV as a lymph node. The mediastinoscooy should allow a biopsy from the nodes to confirm a diagnosis. Having had both a mediastinocopy and a number of rigid bronchoscopy, I prefer the former. The small incision is an easy heal compared to the week long sore throat. 

The node biopsy will confirm cancer and identify type. It is almost certain that the same type of cancer is found in the lung nodules. 

Stay the course.

Tom

 

 

[cwish23]

Ok, thanks for the reassurance! 

[cwish23]

I met with the surgeon who will do the biopsy today. It looks like my lymph nodes grew between my 2/25 ct scan and the pet scan from last week. Holy cow, that seems fast to me.  

Anyhow, my blood pressure was elevated today, which isn't really too surprising, considering, but my heart rate was also high so he wants me to have an ekg and echocardiogram before the biopsy.  Waiting once more!  I think I better start working on my patience lol

[LexieCat]

Yeah, if there's one thing lung cancer does FOR a person, it's teaching patience.  Personally, I'd rather read a self-help book.

 

[Tom Galli]

cwish,

I had an EKG as part of my pre-op before all seven of my surgical procedures. I think it is a standard practice before general anastasia. 

I’d be surprised if your BP wasn’t elevated. You’ll get through this thing!

Stay the course. 

Tom

 

[cwish23]

Hello again. 

Back from my lymph node biopsy. They also did a bronchial alveolar lavage (respiratory culture) while I was out.  I had the biopsy about a month ago but still don't really feel like I have answers. They took 10 lymph nodes and the initial results were "negative for carcinoma". They are still growing cultures for a few more weeks. 

As of now they're diagnosing me with sarcoidosis and don't plan on any kind of treatment. The surgeon called it a diagnosis of exclusion, meaning they excluded everything else....I would have preferred a more confident diagnosis. 

I feel relieved but also still uncertain. With my lymph nodes and the nodules both having elevated PET scan values i know i should feel comfortable that it's not cancer with the negative lymph nodes but its still in the back of my mind. I know I can get a second opinion, I just don't know what else they'll do or who to go to for that. If I've already had a lymph node biopsy is there value in having a needle biopsy of the lung nodule(s)? 

The pulmonologist is going to continue regular CTs and bloodwork. I had a CT scan today actually. My last one was at the end of February so I'm not expecting much change. 

Anyway, thanks for your support! 

[BridgetO]

 

 You might want to consider a second opinion, since you have concerns about your diagnosis. As a moderator, I can't give specific recommendations   for hospitals or doctors. The National Canceer Institute (NCI) has designated some hospitals as Comprehensive Cancer Centers and you have several of them in Texas. Here's the link: https://www.cancer.gov/research/nci-role/cancer-centers  . Others who aren't moderators might have some specific suggestions. 

[Lisa L]

Sounds like good news to me sweets...