CSN Login
Members Online: 8

You are here

VAT assisted lung biopsy

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

Hi all. Hope you are all doing well in these crazy times.

I was diagnosed with endometrial cancer last year; grade was 3 so I had a hysterectomy really fast on April 15.

I was staged 1A. The pre-operative scans revealed 2 lung nodules (stable at 3mm each up till now), but also a section that is 0.9cm of ground-glass opacity. I also have a tiny 3mm "lession" in liver that has not grown and doesn't show up on ultrasounds.

CT scans have been done since March 2019: 3/19, 9/19, 12/19 and 7/20. The radiologists reports have been saying the same thing all along: lung nodules stable, ground-glass opacity stable, probably benign.

My pulmonologist almost drove me crazy 12/19 because she "saw more than the radiologist saw." Sent me for those 12/19 CT scans and for tuberculosis tests (negative) and called me next day 12/24/19 to tell me everything was OK.

Forward to 7/20, two weeks ago, when I went for the CT scan. She called me into her office again and said she doesn't trust the radiologist report (again) and that she wants to do a VAT-assisted surgical biopsy. She talked to my oncologist and it looks like she convinced her I should have this.

It's still surgery, though minimally invasive, but I've read a lot about how this procedure gets overused. I read everywhere that a PET scan should be the next step, but don't know why that's not suggested.

Has anyone had this kind of biopsy? They're saying it's only a one night stay and that it's a same-day procdure and they're pushing for it to be done as soon as I can. I got my two last CT scans on a CD, but pushy doctor and nurses are saying things like "it's no use to send to another radiologist, because they might say the same thing as this one, and they don't make the diagnostic decision."

LisaPizza's picture
LisaPizza
Posts: 324
Joined: Feb 2018

How frustrating.  I wonder if they think the size is too small for PET?

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

That might be a reason. The size. The pulmonary nodules are actually just 3mm and there's only two of those and pulmologist is not worried about those. It's the 0.9cm area of ground-glass opacity that she says could be a metastasis...or maybe not, but I should want to know.

Forherself's picture
Forherself
Posts: 437
Joined: Jan 2019

Am I reading correctly that they have not grown in a year?   If that is the case I would ask for a second opinion, preferably from someone not in the same group.   There are risks from the procedure, and some groups are more aggressive about it.  You could even be exposed to infection in the hospital.   Ask your family doctor for a referral for a second opinion, in my opinion.

And I mean the second opinion from a pulmonologist. 

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

Nothing has grown for a year according to the radiologists that the pulmonologist doesn't want to believe. 

I called the pulmonologist's office to ask a few questions about hospital stay and timing (they said it's one day only without complications). Her nurse was already taking out the calendar to put me in for surgerical biopsy on August 6. When I said "not so fast" she said "what about August 11. "Then she said that since I had the CT scan done on 7/7, I can't go past 6-8 weeks from that date because I would require a new pre-operative CT scan and perhaps insurance wouldn't cover that.

Nurse said pulmonologist is not too worried about the solid 3mm nodules, but about the ground-glass opacity of 0.9cm. She said that previously it was measured at 0.84cm and it grew to 0.96, but they always round it down, not up. That is true according to what I've read, but it's also true that maybe she could wait a few months to do this biopsy. I've read about the risks, too: collapsed lungs, infection. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2802
Joined: Mar 2013

well first, good for you saying, NOT SO FAST.  I agree with Forherself that asking someone outside that group for a second opinion.  Your pulmonologist sounds like she is very persuasive, and she might be right about it in the end, but it sounds like there is work to do. 

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

Yes, all I want is for this not to be such an emergency when it hasn't been before and it hasn't grown for so long.

These ground-glass opacities are slow-growing and that's why they watch them for 3 years. It's only been a year and all I'm asking is for six more months to see what happens in the next scan; or even three more months, not 3 weeks.

MoeKay
Posts: 292
Joined: Feb 2004

I didn't have a VAT-assisted surgical biopsy, but had a transbronchial lung biopsy during which my lung was punctured.  It was supposed to be an outpatient procedure, but ended up being a three-day inpatient hospital stay, during which I needed to have a chest tube inserted to keep my lung from collapsing.  As a result, I would urge you to get a second opinion from another experienced pulmonologist regarding your need for the biopsy. 

My story is very long and I don't want to bore you with too many of the details.  My situation was different, though, because I had a severe cough that sent me to the ER where the months-long ordeal began.  My chest CTs found, among other things, ground glass opacity.  One of the radiologists stated that the differential diagnoses included but were not limited to multifocal pneumonia, tuberculosis, sarcoidosis, eosinophilic granuloma and pneumoconioses.  However, given my endometrial cancer history, there was also concern that I might have metastatic cancer.  In the end, I didn't have any of the aforementioned, but was diagnosed with eosinophilic pneumonia. 

I realize that you had a grade 3 cancer, so you don't want to delay getting to the bottom of things, but your case sounds sufficiently complex that a second pulmonologist's opinion seems appropriate and warranted.  There is risk to any invasive procedure, so I would want to discuss with several pulmonologists whether there are other non-surgical options at this point. 

Good luck!

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

what they will cover and when. Get it in writing. You can always schedule then cancel if you get enough info. In this time of Covid I would certainly be very sure you need this procedure, or if you need it at all. 2nd opinions are gold. Good luck to you! 

 

Denise 

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

I'll start getting on this tomorrow. Thank you for all your help.

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

I told the lung doctor I didn't want to have that biopsy yet, until I get a second opinion. She said they would call in October.

I went to get a mammogram and they wanted extra views and then ultrasounds and after that biopsies of the left breast. My primary physician called me today to tell me that I have invasive ductal carcinoma, poorly differentiated.

I had a mass on left breast of 3.2cm and also a lymph node that was 1.1cm. That's what they biopsied last Friday.

I know someone here, doublewhammy (?) got both cancers at the same time. My uterine cancer was last year. I'm hoping things go well with this one, but it was really a blow when things were going well and I was trying to recover from the last year scare.

Thank you all for all the help you've given me here. Hoping the breast cancer forum is as good as this one, because I see a lot of the others don't ever answer you. I'm just scared today.

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

I am so sorry to hear aboiut the breast cancer. Yes, I remember that there are a few ladies here who have had two cancers at once and hopefully they can give you some support. If the breast cancer board is not active, please find your way back here, we are here for you. Let us know how you are doing as you get more information. 

xxoo

Denise 

oldbeauty
Posts: 270
Joined: May 2012

Primavera, I'm so sorry to see this development.  I hope you can get in to see a good specialist asap to put your mind at rest and develop a treatment plan you can support.  Doublewhammy posted a few days ago on the Kaleena thread; maybe you can privatemessage her.  Donna Faye, I believe, also had breast cancer many years ago before the UC she's in treatment for now.  I only had a scare 3 years ago while in the midst of chemo.  Like you, I went for a routine mammo and then got called back for an ultrasound and a 3D image.  They told me I needed a biopsy; that I likely had an early stage ductal carcinoma in situ.  I was freaking out...and then it turned out to be benign calcifications.  So, I lucked out and you, alas, did not.  I can identify with the fear but you must be in a different place right now.  Do your best to turn your attention to things you enjoy while you wait for the preliminaries to play out.  Good luck on the BC board.  You are one of us, so don't hesitate to call on us to keep you company.  Best wishes, Oldbeauty

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

I was being followed for calcifications on right breast already. Every six months, extra views and ultrasounds. Started last year in February, then I got another set in August. Both times it said "calcifications on right breast, probably benigh."

Then I was going back in February this year again. But my oncologist asked me to move from a radiology center where they do more than just breast, to the hospital breast cancer center, where they only do mammograms. I picked up my scans instead of going back to that other place and prepared to move to the hospital center, but then the pandemic hit.

I waited six months this time, so I went a year later to this new place. Going for two more biopsies on Monday. This time for the calcifications. The mass on left breast was either new or grew fast. Hospital said they would have followed calcifications with a biopsy anyway, not just checking every six months.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1683
Joined: Jun 2015

Primavera,

You have every right to be scared! And, I know you will fight it just like oldbeauty suggested. I hope they provide you a plan quickly so that you can get started kicking this darn thing to the curb. I'm sure you will feel much better once you know what to expect. Even if the breast cancer board is active, please come back and let us know how you are doing. We are here for you!

Love and Hugs,

Cindi

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2802
Joined: Mar 2013

Primavera, I am sorry to hear about the news you got.  Dang it.  I think you will find there is lots of good support for breast cancer, but as Cindi asked, please be sure you let us know how you are doing.  

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

I don't know much right now. I am going to take a covid test Friday, then on Monday I'm going for a stereotactic biopsy on each breast for calcifications. I'm praying at least those are benign.

My primary physician moved fast today and she made me an appointment for Sept 3 with a breast surgeon and he should have the results of the Monday biopsies before I go see him.

Thanks for the help.

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

And anything else! We are here for you. 

xxoo

Denise 

Forherself's picture
Forherself
Posts: 437
Joined: Jan 2019

Primavera.  I pray for good outcome.  My Aunt had both uterine cancer and breast cancer.  She lived to 90 at home.   There is hope.  

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

I'll let you know about Monday. I think the news will probably come from the surgeon I'll meet three days later, or perhaps my primary physician will call me again.

I had the covid test today. It wasn't bad at all.

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

I had the stereotactic biopsies on both breasts for calcifications after the ultrasound biopsies revealed the breast cancer on left.

I met with the breast surgeon 3 days later. I'm assuming he had the results for the stereotactic biopsies because he said right breast was OK. Not sure about the calcifications on left breast, but since it's already compromised, I didn't ask. I'll see the report online pretty soon.

Surgeon said he couldn't do a lumpectomy because the area is too "dispersed." He wants me to have chemo first, then a mastectomy with immediate reconstruction. I'm seeing oncologist on Sept 15 (and also the plastic surgeon) and having bone scans, chest, abdomen and pelvis ct scans on the 16th.

I wonder how long I have before they send me straight into chemo. I'm scared of it, of course, but reading all the suggestions for icing feet and hands and the rest over this forum. The uterine forum has the most suggestions, I think.

I saw another post for the icing mits. I'm trying to get the booties, too. I read that Elasto-Gel had a recall. I think people got frostbite?

I would do what ZsaZsa did with the ice, but in the middle of this pandemic, they don't let any other people than the patient in the cancer center.

I'll know more once I see the oncologist.

Molly110
Posts: 144
Joined: Oct 2019

It must have been a relief to learn that the cancer is confined to one breast.

If you want to do icing instead of mitts and booties, ask your care team about it. My center did not offer either icing or mitts, but they did help with whatever the patient does, so my wonderful chemo nurse changed my mitts and booties, which I brought in two ice chests. On my last chemo, it went longer than I had cold mitts for, so my nurse used ice.

Whether you choose mitts or ice, you will need help from your nurse or chemo tech. It takes a couple of minutes to change the gloves and mitts when they are no longer cold enough, and you don't want your hands out of the mitts long enough to change them yourself. I would be really shocked to learn that the chemo nurses and techs aren't familiar with and happy to help you with either mitts or icing. 

I hate that people in chemo cannot have their support person present, even though I know it is to protect them. If it helps to know, you will have a lot of us pulling for you from a distance.

Molly

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

Just coming here gives me comfort.

I'm hoping they have real ice and not those little tiny packs that they gave me after the biopsies last time. They were not cold enough!

I'll know more on the 15th, but I don't want to be surprised with too much.

Molly110
Posts: 144
Joined: Oct 2019

Primavera, if your care center provides the icing, they will have the right amount and right size of ice for you. If they only help you, rather than provide it, then you will need to bring the ice yourself. I know that Memorial Sloan Kettering provides this treatment, which means the patient doesn't have to bring ice, but my center -- one of the top 10 in the country -- does not, at least they didn't as of January, so I had to bring my own chests, mitts, etc and women who were icing had to bring their own ice and containers for the ice, whether that was baggies or plastic bins for ice water or whatever they used.  Whether or not your center provides this treatment directly, I cannot imagine that they won't know about it and be willing to help you keep your hands and feet cold, whatever method you use.

It's so good that you are preparing in advance.

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

Thank you for that little piece of information. I might be in luck then. I'm in NJ and Memorial Sloan Kettering and Meridian Health (John Theurer Cancer Center included) have some kind of partnership to follow the same protocol for treatment. I think a lot of people from NJ used to travel to NY to get treatment, so they have opened centers in NJ in partnership with Meridian.

But I see how you can be in one of the top centers in the country and you'd still have to bring your own ice.

Molly110
Posts: 144
Joined: Oct 2019

Great news about the partnership with MSK. I first found out MSK iced on a chemo nurses forum, and there was a lot of discussion about programs that iced and programs that didn't. I believe that mine does not ice because they think the evidence is not yet strong enough, but they will help people ice if they ask, because while they're waiting for the evidence. we're getting neuropathy. I feel blessed to have gotten my treatment there, and my brilliant, compassionate gyn/onc saved my life by getting me in chemo and keeping me in, as I was both reluctant to start and ready to quit  after a couple of sessions. 

MSK only started icing in the past year or so, going by what MSK staff wrote in the comments page responding to questions about an MSK blog article on CPIN (chemotherapy-induced peripheral neuropathy). You have likely already seen this,  but this is what a MSK staff member posted in 2018 in response to a question about cold mitts: “Aug 27, 2018 • 9:05 am  Dear Andy, there have been some studies that have suggested cold may reduce CIPN, but these findings need to be validated in larger studies. Thank you for your comment, and best wishes to you.  C D” And just a year later, on this same MSK blog page, here is what MSK said “Jun 19, 2019 • 11:38 am  Dear Ira, at MSK we offer icing, which involves immersing hands and feet in ice during chemotherapy, to help protect nails, but do not use frozen gloves and socks during chemotherapy. If you are interested in learning more about MSK’s research on CIPN, you may like to read this blog post. Thank you for your comment. Ira Kurtzberg” (The response mentioned nails because that was what the question was about, as nail loss is another side effect for some people.)

 

 

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

I wish their centers would have what's availlable or not at their websites. I've found an article about the cooling caps available at Meridian in NJ.

https://www.newswise.com/articles/seven-hackensack-meridian-health-cancer-treatment-centers-now-offering-innovative-scalp-cooling-treatment-to-prevent-hair-loss-from-chemotherapy?channel=

And then news that the same company is now trying to go into gloves and booties. But in Singapore. Well, at least it's in the works. It should all be offered if you'd want to take it. Although, I know that ice is cheaper than all these devices. Insurance probably doesn't cover any of it.

https://paxmanscalpcooling.com/paxman-develop-a-cooling-product-to-prevent-chemotherapy-induced-nerve-damage-with-national-university-hospital-singapore/

 

MAbound
Posts: 1083
Joined: Jun 2016

I worried about the issue with nails and taxotere, too. I don't know if the icing helped me avoid that, but I also kept my hands protected from sunlight and detergents during chemo (gloves) and used a nail conditioner made with vitamin E oil daily. I've never had patience with wearing nail polish, either, and wonder if not having chemicals absorbed into my nails from doing that helped to avoid that potentially nasty side effect.

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

I never take care of my nails. I cooked a lot, so I kept them short and no nail polish. I hadn't thought about nails until I started checking about icing hands and then I realized this happened. Pretty naive I guess. I'm so bad with conditioners for anything. But I'll take that into my list. I guess it would be good to have OK nails if your eyebrows and eyelashes are going to be gone on top of your hair.

Hair worries me only because I've had alopecia areata and I've seen how some women never ever got their hair back with taxotere and they're suing.

Armywife's picture
Armywife
Posts: 428
Joined: Feb 2018

My nails were not affected by chemo at all, and my hair all came back.  Same with my sis-in-law who had the same chemo for breast cancer.

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

Next week will be when I find out. I feel like I got a little vacation till chemo, and it went fast, but at the same time I want to rush this because I'm afraid of spread, and at the same time, I'm afraid to find out about all those scans. I never had a whole body bone scan. The others, lung, I know I have a 1cm area of ggo and 2 tiny nodules. I used to have a 3mm cyst in the liver last seen a year and a half ago. I'm almost glad that they've been following me for the uterine cancer till now.

EZLiving66's picture
EZLiving66
Posts: 1434
Joined: Oct 2015

I had Taxotere and lost all my finger and toenails along with severe foot neuropathy with medium finger problems. I, unfortunately, hadn't heard about icing and nobody at my chemo center mentioned it. Five years later my fingernails only partially came back and a few of my toenails are disfigured too. Thank heavens for acrylic nails! I'm also missing my left eyebrow and have bald spots in the back of my head. 

This board has been a lifesaver for me. There are so many knowledgable women here! I pray everything goes well for you!!

Love,

Eldri

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

I'll find out treatment next Tuesday. I have a lot of gel refills, booties and mitts. I'm glad I had been reading this board for the uterine cancer last year. I don't want to go read much at the breast cancer forum because I feel I know everyone else here better. And this forum is more active than the others.

MAbound
Posts: 1083
Joined: Jun 2016

The FDA made Elastogel stop selling the slippers I had because they didn't like them marketing them for chemotherapy use without meeting their requirements for testing. Stupid because they were well-designed, well-made, and sure worked. There are other chilling socks on Amazon that should do the same and might even be cheaper. I know that using dry ice to keep them cold really made them a lot colder than using regular ice, so if anybody got frost bite using them, I'd bet my last dollar that they were chilling them that way. I didn't think the mitts felt nearly as cold as the slippers did, so I'm suspicious of claims of frostbite from them. People use things against instructions or deliberately injure themselves to be able to sue more often than you'd think.

https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfRes/res.cfm?ID=160782

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

I thought the same thing about the mittens not being as cold as to cause frostbite. I had read a lot of reviews where people said the mittens were "too big" and didn't get that cold.

I was looking to use dry ice because...well, it's dry. I don't want to make a mess anywhere. But now you've got me thinking.

I have 3 Elastogel mittens coming my way, but I think I need more. And I wanted the booties, but will probably just order those other brands. They look softer and have inserts and since I haven't heard of anyone else using those, I didn't know how well they worked.

I hope they let me take an ice chest or something like that to the center. I just don't want to be surprised.

When I had uterine cancer, the brachytherapy radiologist said "you don't need a dilator." I asked many times and I forced him to "prescribe" one. He was giving me a very skinny one, like a finger, a size 1. I think I remember ZsaZsa once laughing about something like that. So I said I needed a bigger one. He gave me a tiny size 2. I ordered a set instead from 2 to 6 and never used the 2. I did well because I got to my gyno oncologist and the first thing she said was "did you get a set of dilators, medium sized?" I told her her friend radiologist she sent me to didn't want me to order them. She rolled her eyes. Then I told her I did order a set and she was pleased.

I don't want them to tell me I don't need this ice!

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

Thanks for the update. Hopefully your oncologist will give you more clarity. Let us know how things work out for you and what they recommend. 

xx00

Denise 

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

I'll come back on the 15th and update. I don't like it that I'm seeing oncologist before I get my bone and other ct scans, but I guess that was all they could get for me. She'll probably recommend the treatment, but pending results on the 16th.

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

The waiting is always the worst. We are here for you if you feel a need to talk. 

 

xxoo

Denise

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

Yikes. It all sounds so long that it makes you anxious to start but scared to start at the same time; I never liked reading about Adriamycin and heart problems.

Oncologist gave me the schedule today. She said I was "well read" and that's because I already knew those drugs and their side effects from reading here.

AC IV every 2 weeks x 4 = 2 months

Taxol IV every week x 12 = 3 months

Herceptin IV every 3 weeks for a year

After Taxol, I'll have a 3-week rest and will have the surgery; will find out if I need radiation (which complicates reconstruction) and will start the Herceptin treatment.

But first things first, I hope I can do all this without too much trouble. I start September 22. I feel like it's coming so fast.

SF73
Posts: 289
Joined: Oct 2017

Good luck, Primavera. I am the kind of person who likes having a plan. I hope that now that you have the treatment plan in front of you, you have less anxiety. Having cancer earlier in life is both a curse and a blessing (I had mine when I was 44) It is unfortunate that this disease that is associated with aging occurs earlier in life but younger people are so much more tolerant of the treatment. I hope you will do well. 

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

Having this board is really a blessing. It keeps me sane and calm. 

Subscribe to Comments for "VAT assisted lung biopsy"