Fallopian tube recurrence in lung?

thatblondegirl

Hi, Ladies. I haven’t created a new post here in a very long time. And I’m just sick (and furious) that I have a reason to do so now. In late 2020 diagnosed Stage II FTC with secondary peritoneal. Remission 2021.

Last fall my CA125 rose very slightly and so GYN/ONC was insistent I have CT. I was so devastated and so ill for so long after that, that I couldn’t even bring myself to write about it here. Report contained sentences like “inflammation or metastasis,” and something “next to or possibly invading” the colon. I have grown to despise words in CT reports like, OR…or POSSIBLY….or PRESUMABLY…..from what I consider to be lazy and/or incompetent radiologists. And who never have to look a patient in the eye or be held accountable for anything. I was told, “We have to go in.” Doctor convinced my cancer was back (this is 2 1/2 yrs. after my last chemo). Good news: NO cancer. Bad news: He removed 8” of my colon. There was so much scar tissue from previous surgeries it had almost closed my colon completely off. Spent 6 days in hospital. It took me 2 months to feel decent after that nightmare. So…in November, just 7 months ago, 5 tissue samples ALL were NOT cancer.

I have a long history of incompetent doctors, misdiagnoses, and conclusions based on bias, not facts.

So… now I’ve recently had a head and neck CT for an unrelated reason. I was sick as a dog with a sinus infection and respiratory illness - head, ear, and chest - when the CT was performed, but I’d waited 6 weeks for the appointment & didn’t want to cancel. Neuro radiologist read down into my chest and reported “multiple nodules or nodular consolidation” in my right lung and enlarged mediastinal lymph node. There’s that word OR again! ONC insists on chest CT. Report reads there are 2 “masslike structures” measuring blah, blah, blah (small), and “presumably metastasis.” MassLIKE?? PRESUMABLY?? Now…I’m scheduled for needle biopsy on Wednesday. I swear…because the orders came from an ONC it must be metastasis. My CA125 was 25 last fall, 33 six weeks ago in the throws of my respiratory illness, and 37 this week. It has NEVER been a good indicator for me! It was 20 when I had 8 small tumors in my pelvis and 60 after two surgeries to remove them. I still have water in my ear and the canal is still somewhat swollen.

There are at least 20 valid reasons why this is probably nothing. Twenty! But because I’ve been a cancer patient “we have to be diligent.” Diligent is killing me!! Emotionally I’m about done in! And this is the 2nd time in less than a year this has happened! I’m soooo sick of inaccurate or inconclusive CT’s!! I’m so sick of words like or, possibly, and presumably sending me into a panic! ONC nurse tells me a year ago, “Live your life! You don’t have cancer!”

Well….that’s not easy to do with bloodwork (CA125) and CT’s torturing me!

You might wonder….”Do you have any symptoms of anything?” NO! NOTHING! Other than stupid CA, other bloodwork all stable. No breathing problems, no cough, no lumps or bumps or bleeding anywhere. In March I started riding lessons, bought a horse within weeks, and every 100+ degree day we’ve had around here for weeks, I spend 3+ hours a day at the barn caring for, playing with, saddling, and riding my horse. I don’t see how I could possibly be having a recurrence. Or some new cancer. I said the same thing last fall. I don’t know how anyone who’s 68 yrs old can spend that kind of time in scorching temperatures while managing a 1200 lb animal and have cancer! How would that be possible?

So, maybe some of you can help me by answering a couple of questions…Have you had a recurrence in your lungs? Recurrence distant from pelvis, but not also in pelvis or somewhere in between? Have you had CT reports as inaccurate or inconclusive as mine? Have you had doctors tell you you had a recurrence and start a treatment program without conclusive evidence (surgery or a biopsy)? Have you had a needle biopsy or “second look” surgery?

Any advice or information would be greatly appreciated.

Love to all.

❤️, A

thatblondegirl

P.S. The “nodular” business reported a month ago is nonexistent on CT last week. So, where’d that stuff go? That stuff was significant enough to send me for a full chest CT, but it’s not there now? Are you kidding?

The stuff they’re worried about now (they say….) is lower in my lung and so not captured on 1st CT.

A

oldbeauty

Hello "A,"

I "hear" your anger and frustration. I read your profile and this message, and I don't quite get exactly what's being followed up. But, to answer your question, Yes, I've had recurrence(s) to the lung from distant places, and "No," I've never had symptoms that would fall into the pain or trouble breathing category to alert me. I invite you to read about my 18-year saga in my profile. In my first 2 recurrences the lung nodules were too small to biopsy. The first set were tracked, mapped and measured every 6 months, and resolved after one year on high dose progesterone. The second were "presumed" malignant based on previous history. The third was removed/biopsied (malignant) but only after 2 years spent "watching and waiting." There may/may not be something going on now, but I choose to be positive that if it is somethings it's slow-growing and I'm content to wait one year for my next CT. I've arrived at a place where I'm comfortable accepting I have chronic disease, and cancer no longer is a looming fear hanging over me every day.

We are about the same age, and if you have regular Medicare, you can go to any top cancer research/hospital in the country for a second opinion. Might that be something you'd consider to help you get a clear understnding of what has been determined and what may still need to be investigated? In the meantime, keep bonding with and enjoying your horse/companion. No doubt that's a stress relief and just plain fun.

Best wishes, Oldbeauty

BluebirdOne

Such good advice, Old Beauty,

Denise

NoTimeForCancer

Dang, A! I am so sorry to hear all the you have gone through and the issues with doctors. I agree with Oldbeauty on bonding with that beautiful horse. Please do come back to let us know what is going on. Hugs dear one.

thatblondegirl

Hi, Ladies! Thank you so much for your prompt and kind replies! Y’all have always been so sweet and helpful to me. I’ve been so upset! And I feel like it’s all just a mess. One thing leads to another…incompetent radiologists (Old Beauty has a very similar unfavorable opinion of them!) ….everyone more interested in covering their behinds than getting true and accurate information.

I’m sorry if I was unclear in my original post, but the concern is the two “masslike” things in my lung along with the enlarged mediastinal lymph node. I contend the lymph node has been working overtime since I was sick with the respiratory illness all of May. They want to see if I’m having a recurrence or I have lung cancer. And they’re basically 2cm X 1cm…..so, not under 1cm.

Old Beauty I read your horrific story years ago. It’s worse than mine as far as running into an incompetent, lying GYN. Horrible. I read it again to see your timeline and experiences. I also read all your old posts and all the responses. You and Jan have similar lung and recurrence stories. And you are both fantastic fighters and survivors!

I’m very sad to learn about all who have had recurrences…..especially lung, as I was really hoping it was less common. There are a couple of variables might that mean that my chance of a lung recurrence might be less likely. I’m probably grasping at straws cuz I’m just so desperate to not recur! One, I did have a staging surgery ….benefitted greatly from my GYN/ONC’s fabulous surgical skills….and I had no lymph nodes involved anywhere….all lymph nodes clear all the way north to my heart and lungs. Secondly, I didn’t have any lymphovascular invasion like Jan did. She and I discussed that years ago & I think she would still say that makes a difference in likelihood of recurrences. Thirdly, my GO insisted on chemo after surgery. I think this might be considered a huge difference as to recurrence or not. I cried and begged and begged to get out of it. “No,” he said. “You’re fixable and this is your best chance for a cure.” Since I was Stage II, there really was no choice, and I knew it was my best chance to never recur. And lastly, I’ve been taking immunotherapy (Zejula) for 2 years. Started right after chemo.

This is how CT’s have failed me: 1st: INACCURATE showed a small tumor….true, but there were THREE others; 2nd: INCONCLUSIVE fluid..inflammation..this, that, so couldn’t be declared in remission. Had to get another in 3 months.; 3rd: INCONCLUSIVE about the same as 2nd, but GO says I’m in remission; 4th: INCONCLUSIVE (head & neck) nodules or nodular consolidation, need another. 5th: INCONCLUSIVE still nobody is sure of anything and now say we need to do needle biopsy. I have no confidence in a needle biopsy, but don’t trust a surgeon to go in there for a resection and then do something stupid & without my permission!

Old Beauty, how did they talk you into chemo the second time they thought you had a recurrence in your lungs without a biopsy or wedge resection? I guess I’m just being obstinate or stupid (both?), but I’ve made it very clear to my GO I’m not doing that again. When he thought I was recurring last fall he said next time Doxil (the one that has a word in front of it…liposomated or something) & Carbo…I would be less sick & no hair loss. Regardless, it’s chemo and I’m gonna fight like a dog against it. Like…you boys better figure it out…surgery…radiation…special this or that…a different immunotherapy….whatever…give it your best shot, but I’m not doing chemo.

MD Anderson is 60 miles south…we’re in a suburb of Houston. Other than that I could travel about anywhere I might need.

I named my horse Wyatt, and he’s a beautiful palomino! He’s so gentle & sweet and became Mr. Popular at the barn overnight! Other than choosing my precious husband, he is THE BEST decision I have ever made in my entire life about anything! The ranch is just minutes down the road, I can pop over whenever I want, I’m getting great exercise, and made many wonderful new friends! There are many idioms concerning horse ownership. This is my favorite: My Therapist Eats Hay!

All your support & advice is welcome and appreciated! I will certainly let y’all know what’s happening.

❤️, A

MoeKay

Hi A,

I'm really so sorry to hear all that you've gone through and continue to go through in recent months. I'm jaded, I admit, but I'm convinced that the more tests they do, the more they will find, much of it without clinical significance. But unfortunately, testing is a necessary evil in a lot of cases, and a prerequisite to getting to the bottom of things. I've had a recent saga of months-long testing and abnormal results which I won't bore you with, but suffice it to say that I was frustrated, angry, and just not a pleasant person to be around until we got to the "final answers."

You asked questions in your first post on this thread, so I wanted to respond to them. You asked:

Have you had a recurrence in your lungs? My answer: No.

Recurrence distant from pelvis, but not also in pelvis or somewhere in between? My answer: No

Have you had CT reports as inaccurate or inconclusive as mine? My answer: You tell me. CT report stated "Multiple small patchy foci of alveolar-type increased density scattered within both lungs, suggestive of infection, or possibly the sequela of septic emboli. There are a few tiny bilateral pulmonary nodules, suspicious for metastatic disease."

Have you had doctors tell you you had a recurrence and start a treatment program without conclusive evidence (surgery or a biopsy)? My answer: No, not for cancer, but yes for pneumonia which was one of the things they thought I had at the beginning of this medical adventure. They treated me with intravenous and oral antibiotics for months, but since I didn't have pneumonia, my condition didn't improve.

Have you had a needle biopsy or “second look” surgery? My answer: I've had a needle biopsy on my breast. On my lungs, I had a bronchoscopy with biopsies. No cancer found. I won't put you to sleep with all the gory details. Ultimately, I was diagnosed with eosinophilic pneumonia, and required treatment with steroids for about 8 months. That adventure was in 2009, 10 years after my 1999 endometrial cancer diagnosis and 14 years ago.

Good luck with your needle biopsy on Wednesday! In the meantime, enjoy your time with Wyatt (and your husband, of course)!!

thatblondegirl

Thank you, MoeKay! I’m so sorry you’ve been through all of that! And your recent troubles. I hate that you’ve been frustrated & angry, but feel better that I’m not alone in those feelings. And the more they look…yes! And I swear a lot of it they’re just CYAing it! Your answers to my questions were very helpful! Oh.. “suspicious for metastatic cancer,” …..so glad it was not! I have vowed that if I have a CT to be ordered in the future I want it to come from my PCP’s office! You think I could avoid the presumption of cancer? (probably not…again, the CYA thing…)

I decided a long, long time ago, that perhaps one of the reasons (there are so many) the survival statistics for various cancers can be so awful is that there are many who can’t or won’t fight for themselves. It’s really sad. The medical community often makes a bad situation WAY worse than it should be just by requiring us to fight like dogs for help. Jaded? Yes, I am. Cynical, yes. And I’ve been saying this to doctors my whole life…..”I’m not a doctor. I’m just a lay person. But 2 + 2 are NOT equaling 4 here!”

We are very lucky to have friends who can help us here. I’ve always been hugely grateful for it!

I’ll keep focusing on Wyatt! Nothing makes me happier than when he sees or hears me and he shouts out this huge, loud whinnie! He’s saying, “Hey! Nice Carrot Lady! I’m over here!” My husband never whinnies. Hahaha 🤣

A

cmb

A, I’m very sorry to read about your recent troubles.

My sister just had surgery for early-stage lung cancer in March. While her initial CT-scans showed areas of concern, the PET-scan was the one where the areas really “lit up” for probable cancer. She then had a bronchoscopy to confirm the two areas were cancer, followed by surgery several weeks later.

Other women on this board have commented that PET-scans were far more informative about their possible recurrence than regular CT-scans. Getting one of those now might give you a more definitive answer as to whether you have cancer or not. 

thatblondegirl

Good morning, cmb

Thank you. I’m so sorry to hear about your sister. I hope her surgery “got it all” and she’s doing OK.

I’m calling my ONC’s office this morning to see if I see him tmo and get some questions answered before the biopsy. I had an appointment scheduled, but when this came up I was asked if I wanted to keep it and stupidly said no. I was so distraught I wasn’t thinking clearly and figured I’ll have to see him after, so why bother…and that there was no way out of it. We are thinking of canceling the biopsy and requesting some other diagnostic tool, like bronchoscopy or PET/ CT. I watched a loved one have a bronchoscopy decades ago and was horrified at his agony. I also think my areas must not be close to the bronchi or they would have ordered it. I didn’t ask about a PET last week because I requested one in November in lieu of “going in” and was told no. In his mind my cancer was back, so PET was pointless. This situation is different.

We have concerns about the risks of the biopsy, especially since we’ve lost faith in doctor’s in general, particularly radiologists. At least this one is going to have to look me in the eye and answer my questions . I have a high tolerance for anxiety and pain, so less sedation instead of more is fine, and maybe he/she will be less likely to get sloppy? I’m worried about a collapsed lung and/or spreading cancer by dragging the needle out. And most importantly, I’m not really going to trust the results….in that there’s cancer there, but they miss it. I argued with ONC’s nurse last week about the fact that they’re 2 “masslike” things and you’re only looking at one and not going to biopsy the enlarged lymph nodes. I warned them….I’m only doing this ONCE. If you want both you better do it now. If you want the nodes, better do it now. And made it very clear there will be no PRESUMABLY in my future…or OR, or PERHAPS.

I’ll let everyone know what’s happening. Thanks for your support.

❤️, A

thatblondegirl

Hi! I got my appointment back at ONC’s office. Noon tmo and we can get my questions answered before biopsy. Hallelujah.

😎, A

oldbeauty

https://csn.cancer.org/discussion/comment/1706635#Comment_1706635

A,

My reasoning was that the scattered lesions first seen in 2012 resolved after treatment with high dose progesterone. Hence I concluced there must have been a "there" there. So, when lesions in the lung were again detected in late 2016, I agreed with my oncologist that, given the previous experience, it was reasonable to presume the lesions were malignancies. Hence the acceptance of an intense chemo regimen. When lesions were again seen in late 2018, I opted to watch and wait. This played out over 2 agonizing years, and I rejected the biopsy, not because I was afraid the procedure would go wrong or that cancer would leak out of the needle, but because I reasoned it was more likely than not to be malignant and the biopsy would be followed by surgery so why not skip the biopsy and "go for the gold?" I spent a lot of that time researching terms from my CTs, paying close attention to similar experiences of women here, and learning about treatments such as high-dose targeted radiation. I must say I've never really been frightened of treatments. I have lived through great periods os stress in my life, and I forged a take it as it comes stoicism, I guess. I also agree to accept that medical specialists are worthy of trust. But I do my due diligence research and I ask a lot of questions. Perhaps that pathway may prove useful for you. Work at finding professionals who are recognized experts, consult them, and if they seem like a good fit, then confidently place your care in their expertise. I personally think you don't do yourself any favors by piecing together your own treatment protocol, unless, of course, you've invested the time reqired to develop a thorough understanding of how cancer "works," and what each of the treatment options may realistically do for you. Chemo was very unpleasant, and left me somewhat disabled with neuropathy, but I believe it was instrumental in knocking back my particular "type" of cancer to the lazy, slow growing variety, and if were recommended to me again, I would seriously consider it.

I wish you well in charting a course for yourself that balances the competing issues you face. Best wishes, Oldbeauty

thatblondegirl

Thank you, Old Beauty. I’ve had very bad experiences with incompetent doctors and misdiagnoses for more than 42 years. Life threatening misdiagnoses. I was asking lots of questions, I was on top of it and I was right. They were wrong. Like, almost let me die, wrong. Like, need an ambulance, might die, wrong. It takes a lot for me to trust them.

I trust my GYN ONC as a skilled surgeon, and cancer killer, but he did not do right by me when it came to dosing of my immunotherapy. I had to figure it out and research for myself on that one. I suffered something awful with the chemo and I don’t want to do that to my body again. I pretty much refuse to lose my hair again. Yeah…it’s just hair, but I have very beautiful long hair and I will avoid losing it again. I think these doctors sometimes just throw stuff out there…like throwing pasta at a cabinet…to see what sticks. I’m just saying, they’re going have to do some pretty fancy explaining to get me to agree to it again. I will try other options…maybe even different chemo if I’m desperate to not die, but no more paxlitaxal. I’m sooo grateful he insisted I do chemo originally. It seems like a sad and shocking number of people have surgery and are sent on their way with no other treatment. Two years later they’re back with a recurrence.

I’ll see what they say tmo and what the answers to my questions are about the needle biopsy. If nothing else maybe we can put this episode to rest. I saw my cardiologist for an unrelated thing today and he asked 5 questions about my chest…this.? No. That? No….no..no..no. Then 5 questions about my breathing…like what it would take for me to be out of breath? I told him nothing makes me breathless. He listened to my heart and lungs. Then his assessment of my current situation? They’re overdoing it…shaking his head…I said it’s too much CYAing going on…he agreed. I pray he’s right.

❤️, A

thatblondegirl

Hi! I’m going ahead with the biopsy tmo. Fingers crossed. I had total pelvic and abdominal exam today at the ONC’s office and she felt nothing. Everything soft…just like it should be.

In all my reading & research I’ve discovered that PET/CT’s are no more conclusive that regular CT. I had thought they were. Bottom line…if you want to know what tissue is you have to biopsy.

It’s true. No one but me is in a panic about this. No one thinks I have anything to worry about…we’re just being diligent. I don’t know about y’all, but I think maybe if you’ve never been a cancer patient, you don’t really know what that kind of terror it brings. And the attitude is…well, if there’s something then we’ll treat it and you’ll be fine. Like, you’ll get treatment and be OK. I guess they assume I’m worried about dying. I’m not worried or upset about dying…I’m worried and upset about being sick again. I had a terrible time getting thru chemo! Y’all know! I hardly left my house for 5 months I was so sick! And even if I thought I felt OK, I desperately wanted to avoid getting sick in public.

Thanks for listening, friends.

Love, A

thatblondegirl

Hi

I can’t believe I’m going to have to write this, but here I go.

I picked up my pathology report at 12:00 and 45 minutes later I was in my PCP’s office (anticipating bad news, I had made an appointment because I knew I would need to see her), and by 4:00pm MD Anderson was calling to get me set up as a new patient. Diagnosis: Adenocarcinoma, primary lung.

We still can’t believe it. I knew after the things the radiologist (who did the biopsy) said that it was going to be bad. He didn’t say it outright…that he knew it was cancer, but he might as well have. I had prepared us for two other much worse scenarios….1) Small cell lung cancer, or 2) metastasis of my FTC. So, we were relieved it wasn’t one of those. At least this time the radiologist had to look me in the eye, I saw the scan on the screen above my head, and was able to ask questions and find out more information than was contained in those stupid CT reports. The tumor…or tumors (one too small to biopsy) are in the periphery of the right middle lobe, but not touching the pleura. He made the little incision about 2 inches southeast of my nipple, through my breast. I have small breasts, so maybe that made that possible. I had asked him about my mediastinal and hilar lymph nodes being enlarged as noted on CT’s. They did not change in the month between the 2 scans. After the procedure he pointed way to his right side of his chest, and then the middle of his chest and said, “This….is not related to that.” If he’s right, it’s only in that one spot and there’s no metastasis.

We have an appointment with an MD Anderson surgeon in the morning. I hope he knows all he needs to and is ready to put me on his schedule. I hope the fact they didn’t have me see a diagnostician first is a good sign. My PCP made the referral specifically to her personal friend, but I was told she was a metastatic doctor….so it’s good news they think I don’t need her. I’m hoping this is really early and he can take a wedge, or a segment, or a lobe and we’re done. None of that will be a fun recovery process, but I’ve had very serious abdominal surgery (colon) and I’ve had very serious chest surgery (right thoracic for open heart valve replacement)…..I’ll take the chest any day of the week.

I’m sorry I’ve taken so long to give an update, but I’ve kind of been all over the place emotionally. I’m not scared, I’m mad. Like, really? We’re doing this again? We’ve spent 2 1/2 years focused on keeping the original from coming back and now this? I’m pretty unhappy with my GYN/ONC…..who’s been so all-fired up about recurrence in my pelvis, but ignored my lungs. Even though that CA125 had gone up again he would have only ordered CT of abdomen & pelvis. And we’d still be in the dark about my lung. And research tells me 1 in 6 cancer patients will have a new primary cancer in their future. And where do these new cancers show up? Over 54% in the lungs.

I’ll let y’all know what’s next. Thanks for being there for me.

❤️, A

NoTimeForCancer

A, thank you for letting us know and I am so sorry to hear what you have going on. So good to hear you have doctors lined up and ready to go. When you are ready, please be back to update us with your next step. Hugs dear one.

ConnieSW

You have been through so much. I’m glad you are mad, you have every right to be. I will be thinking about you and waiting to hear what comes next. Good luck

MoeKay

Hi A,

I'm very sorry to hear that you've received a new primary cancer diagnosis. I'm mad for you! But, as you say, the good news within this bad news is: it's not metastatic cancer and it's not small cell lung cancer. My fingers are crossed that this is very, very early with a straightforward, relatively quick resolution. All the best to you!

thatblondegirl

Thank you so much, Sweet Friends.

My appointment today did not go as I hoped. No bad news, but NO news at all. Like…,seriously? Why did we meet today? He was not prepared. He had only read reports, and not looked at scans. He asked why I kept referring to it as being in the periphery. I knew more than he did…..especially as to location. I SAW the scan at the biopsy. I SAW where he inserted the needle. The radiologist SAID it was in the periphery.

So, basically we met just so he could tell me he was ordering a PET, MRI, and bronchoscopy. Like I couldn’t have been told this on the phone? I told him what the radiologist said about “This…not connected to that,” about the mediastinal and hilarious lymph nodes. Obviously, that radiologist saw something that told him that fact, or he wouldn’t have volunteered it. Again…if he’d look at the scans….

I have cried and cried today. I cry when I’m mad.

Thank you for being so kind and supportive, Ladies. It means so much.

❤️❤️❤️, A

I’m going to the barn in the morning and wear myself out playing with Wyatt! Best medicine ever!🐴

thatblondegirl

Huh…. What a funny spellcheck malfunction! I was was referring to my hilar* lymph nodes. I don’t know of any hilarious ones!

😘, A

cmb

A,

I wish that your appointment with the surgeon had gone more smoothly and that they already had enough information to move forward with the surgery. But things don’t seem to move as quickly with lung cancer as they can with uterine cancer. My sister went through months of appointments and various tests before she finally had her lung cancer surgery.

Now some of the delay was her own reluctance to move forward with some of the recommended steps. She kept hoping it was not cancer or only a very slow-growing type. But once she finally got the bronchoscopy done, they did schedule her surgery just within just a few weeks.

So I hope that this final set of tests will happen quickly so that you can have the surgery very soon. I’ll be thinking of you...