Fallopian tube recurrence in lung?

2

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  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #22

    Thank you, cmb

    I called the next morning and had a long conversation with my intake “team” girl. She apologized profusely and explained that they had not received copies of the scans yet. Those and the tissue samples were to arrive that morning. My PCP’s friend is the diagnostician, but she was going to be out of town and had asked the surgeon to meet with me kind of as a courtesy thing. A few minutes after my phone call they were calling to see if I could come for PFT later in the day. So, I’ve had that done. By late afternoon PET, consult with pulmonologist for the EBUS, the procedure, and a consult with diagnostician were all on the calendar. Those last two things aren’t until Aug 3rd, but at least they’re there!

    I’m so sorry to hear about your sister. I hope she is doing OK. I’ve quickly figured out a couple of things…1) lung cancer staging is really messy…what seems like a ridiculous number of tiny things within each stage…and a lot of “OR one of more of the following”…OR…this or that…it’s very complicated and seems strange, and 2) it appears they completely stage it prior to any treatment, very unlike GYN where the only staging occurs after surgery.

    I feel like my whole future depends on the status of the 2 nodes…the one in the mediastinal (1.5cm)and the hilar (1.1cm). According to some standards they are barely considered to be enlarged, or even not at all. I asked my friend and original chemo nurse about them, and she thought those sizes didn’t seem like too much. Only the biopsy will tell us for sure. And it’s very likely they were enlarged because I had been so sick recently with the respiratory infection.

    This is a good thing….With my FTC I had the incompetent GYN, and then sent to my GYN ONC. This time, with MD Anderson I have a TEAM…..thoracic oncologist/diagnostician, pulmonologist, and surgeon. Together they will consider all the results and create a plan.

    Our go-to coping mechanism is to leave town! And we desperately need a break from the heat! So, in between testing we’re to heading to the mountains of New Mexico for a week. Forecast: highs mid 70’s, lows mid-40’s. Thank goodness!

    I’ll let y’all know how this is going. Just like with GYN cancers the waiting for diagnosis and treatment is excruciating. I’m hoping to feel a lot better when we have a plan. I sure appreciate all my friends here. Like many other boards, the lung cancer board is very quiet and a lot of people seem to post once and disappear. The support we enjoy here is not available there.

    Love to all, ❤️❤️❤️

    A

  • Prayer2023
    Prayer2023 Member Posts: 33 Member
    #23

    I understand why you’re upset and I understand why you are crying! I’m so sorry!! Personally, I am waiting for someone to call me and schedule a CT to see if my Endometrial Adenocarcinoma has metastasized before they can do my total hysterectomy surgery. If it has, then they have to give me chemo first. The clock is ticking and there is no sense of urgency! I think the insurance (I’m on Medicare) may have something to do with it…

  • Forherself
    Forherself Member Posts: 1,013 Member
    #24
    https://csn.cancer.org/discussion/comment/1707200#Comment_1707200

    Sorry to hear what you are dealing with. Usually a staging hysterectomy is needed before chemo, but I'm sure your doctor is doing the right thing. As for Medicare, it is usually very good. If you have an Advantage Medicare Plan there are lots of facilities that don't accept your plan. I found this out when I was diagnosed. I changed my Medicare insurance to a supplemental plan, which is accepted by all cancer facilities. That might be an issue for you if you have the Advantage plan.

  • MoeKay
    MoeKay Member Posts: 493 Member
    #25

    Traditional Medicare does not require prior authorization for CT scans, so if you think your insurance has something to do with the delay in scheduling your CT, I suspect you likely have a Medicare Advantage plan. Of course, it wouldn't hurt to give your doctor's office a call to see what's up. Often it's the squeaky wheel that gets the grease. Waiting for appointments, tests, etc., is the absolute worst! Good luck!!

  • Prayer2023
    Prayer2023 Member Posts: 33 Member
    #26

    I m learning that the squeaky wheel gets the CT! I was just notified that I am scheduled Saturday, July 29, for my CT. It’s a little later than I wanted, but at least it’s scheduled. My insurance is Aetna Medicare Gold Advantage Prime. Thank you For and Moe for your responses.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #27

    Thank you, Prayer2023

    I wrote this days ago and apparently never hit “Post Comment!”

    So, here it is! And I’m glad to see you got an appointment!i know all about no sense of urgency. If you read back through my 3 years of history on this board….especially my earliest posts and my profile, you’d se I have complained of a lack of urgency many times. Try to take heart in this….If they thought you were an emergency they would be treating you like it…and the kind of cancer you have generally grows more slowly than another you might have, so it’s probably not going crazy while you wait. I always believed cancer WAS an emergency! Nope….that’s not how it works! Consider, too that unfortunately CT appointments aren’t easy to get. I waited 6 weeks for the head and neck CT’s and had to wait another 6 for the Chest CT. If you can get your doctor to put the orders in…you could call the imaging people and try to schedule it yourself. I always tell them to put me on a list to call if they have a cancellation.

    As to Medicare, I have had excellent coverage. I have a very good supplemental, also, so I never pay for anything. I have seen other women here praise Medicare coverage, so I doubt that’s a hold up for you.

    A word of caution….oh…CT this…CT that….oh….praises for the ability of the CT to detect anything. It’s a fact…..please, someone chime in if you believe I’m mistaken….but CT’s can detect an issue, perhaps a potential problem, but they can NOT distinguish between cancer and inflammation or even scar tissue. From my experience, I would never let someone put a drop of chemo in my veins unless they knew for sure than something was cancer. If you’ve read many of my posts you know my disgust at this point with the words, maybe, or, perhaps, and presumably contained in CT reports. Less than a month ago… “presumably metastasis…” NO! It was not! Huge difference! Just my .02!

    Hugs & Prayers for you,

    A

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    #28

    Hi, A! I'm so sorry to hear about all your hassles and new difficulties. You asked about people having a distant recurrence or lung recurrence.

    Six years after my surgery we found a recurrence that was in my pelvis, my hip joint, and both lungs. Insurance - I was not yet on Medicare - wouldn't allow a PET scan without a biopsy. They decided we could do a guided needle biopsy of the mass in my pelvis, which was confirmed to be metastasis of endometrial cancer. They did not want to biopsy the lungs (which did light up on the PET scan) but said my treatment would be the same anyway. So I had five weeks of low dose chemo and concurrent external pelvic radiation, followed by 6 full dose chemo treatments at 3 week intervals.

    Somewhere along the line one of my doctors said lung cancer (which mine wasn't lung cancer, but was metastatic endometrial cancer in the lungs) often shows no symptoms until it's very advanced.

    My recent CT still shows the pelvic mass which has remained stable now for some years. The medical oncologist thinks it's dead scar tissue. You're right - the CT can see that it's there, but it doesn't know what it is.

    Good luck and let us know how it's going.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #29

    Thank you, FC! I’m sorry I haven’t replied before now, but we were OOT. I’m so happy for you that even though you had the recurrence that you’re still here! It is very encouraging for so many of us. In your case it certainly makes sense to not biopsy the lungs when treatment was going to remain the same because of the pelvic mass.

    MDA emailed my PET report. It was not good. Reported mediastinal and hilar lymph nodes were “nodal metastasis.” It also stated that instead of the 2 “lesions” in the middle lobe we knew about, that there were 4. As far as I’m concerned….and according to staging guidelines for LC, it doesn’t matter if there are 4 or 10 “lesions” if they’re contained in the same lobe. What DOES matter is if the lymph nodes are metastatic.

    As usual, there were numerous points in the report that make no sense and I find infuriating: 1) read and reported by an APRN…. an MDA doctor didn’t read the scan? 2) 3 of the “lesions” were lit up, but not the 4th, 3) the “dominant lesion” (the one that was biopsied & we’re supposed to be sure is cancerous) is smaller than it was 5 weeks ago (How is an actively growing cancerous tumor smaller now?), 4) the 2nd lesion was reported on CT as being 2.4 X 0.9. Now it’s 1.1 Again, a shrinking cancerous lesion? 5) the lesions were lit up with greatly different SUV’s , 6) the mediastinal lymph node that was lit was enlarged to 1.5cm in June, and is now 1.1 (a shrinking metastatic lymph node??), 7) the 2 lymph nodes were lit with greatly different SUV’s, AND my favorite…..8) the muscle in my upper left arm was lit up at SUV of 7.5, which “could be inflammation.” And “recommend clinical correlation” which I’ve learned means “I see something. I don’t know what it is. You should ask your patient.” Seriously? I know it’s from grooming my horse. My deltoid muscle in my left arm has been working hard. The thing that really makes me mad, and makes me question the entire thing is, how is it that inflammation in a muscle is lit up higher than almost all things on the report and yet you think it must be inflammation and the other things you are sure are cancerous or metastatic?

    We meet with the pulmonologist on Friday who is set to do the EBUS next week. It’s very frustrating. MDA has had my case since July 3rd. The EBUS and consult with the diagnostician are August 3rd. When might someone have a diagnosis, treatment plan, and prognosis? The waiting, uncertainty, and inconsistencies are excruciating. As when I met with the surgeon, I said, “You might think a person in my position would be sad or scared. Instead….Wow, she seems very angry. Correct! First of all this isn’t my first rodeo so, I don’t need comfort, I need action. Secondly, I’m furious that I’m sick again. Furious that my GYN ONC ignored my lungs. Furious that I have to question everything and fight like a dog to get care! Furious that treatment for my first cancer and the drug I took to prevent recurrence of it likely played a hand in development of this one! Furious that even though I feel great and don’t have a single symptom of lung cancer, your PET report means I am Stage III A, which means I should have at least 1/2 dozen symptoms! That makes no sense!”

    Last night we went out to the ranch to visit Wyatt. The code for the gate didn’t work. It was 100 degrees. I climbed the fence and quickly walked 1/2 mile on a dirt & gravel road to the barn to see if someone had the new code. I didn’t break a sweat or have a single breathing problem. Does this seem like something a Stage III lung cancer patient could easily accomplish? Just sayin’……

    Thanks again, Friends for listening to my problems. It means so much that y’all are here for me.

    Have y’all ever had such experiences with PET reports? What do your doctors say about about how conclusive they are?

    ❤️, A

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #30

    Hi, Ladies

    We met pulmonologist who will do EBUS and he kind, compassionate, and answered all our questions. With PET results available it’s the first conversation we’ve had with someone who has enough information to give us hope. He said things like…we got this…you’re going to be fine…and it’s curable. LC staging is complicated and seems weird compared to GYN cancers. Basically if it’s in your lung and just the nodes outside your lung, you’re “curable.” Then it’s like it falls off a cliff…if it’s ANYwhere else, it’s metastatic and you’re in pretty big trouble….treatable, but not curable. There’s still hope that my lymph nodes aren’t involved. There is a pathologist present during EBUS, we will have preliminary results immediately, and will be shared with ONC immediately so she’ll have that info in our meeting. All will take place in a span of about 4 hours next Thursday. They did bloodwork yesterday for molecular testing, so MDA is ON that! We feel very grateful that one of the best cancer centers in the country is figuring out out to take care of me! I wish it was at a more speedy pace, but it’s happening!

    Enjoy the weekend! ❤️, A

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #31

    Hi, Ladies

    It’s taken me a while to get back, but news has been tough and I’ve spent a lot of time on My Chart and the phone to get a plan. We finally have a final diagnosis and a plan.

    Those 2 lymph nodes on PET were cancer, so final diagnosis is Stage III B. It sounds way worse than it actually is. With LC staging it’s all about geography. Because I have one lower paratracheal metastatic lymph node it’s “regional.” So, Stage III B also includes people who have cancer spread in/ over/around important structures in their chest (The “Region”)…like trachea, diaphragm, backbone, or heart! In other words, people who have a LOT more disease than I do and most importantly are “inoperable.” I’m very operable. Plan: 3 infusions of pemetrexed, carboplatin, and Opdivo (nivolumab sp?), scans to check to see it did something good and nothing new, and then surgery to remove right middle lobe. The End. Like…only 3 infusions? Yes! These drugs are supposed to be “easily tolerated” (we shall see!) and cause no hair loss. They’ve promised they won’t let me be as sick as I was last time. We are very hopeful. Without me asking the ONC said their intent was “curative.”

    It seems so strange to me….From my first GYN surgery to last chemo was 8 months. We knew pretty quickly what the stage was and what treatment would be. This time….Diagnosis and Stage took what seemed like forever (2 months), but treatment is only about 3 months.

    My first chemo is next Monday. Infusions last 2-2 1/2 hours, not 5-6. Good!

    Love to all,

    A

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #32

    A, so good to hear from you and thank you for the update. Hugs dear one.

  • Forherself
    Forherself Member Posts: 1,013 Member
    #33
    https://csn.cancer.org/discussion/comment/1708066#Comment_1708066

    Well you have a plan. You have been so diligent fighting this disease. I am in awe. Prayers for a successful treatment. Your doctor sounds wonderful.

  • Prayer2023
    Prayer2023 Member Posts: 33 Member
    #34

    So happy for your positive plan. Wrapping healing arms around you! I’m waiting for my pathology results from the hysterectomy I had last Friday.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #35

    Thank you so much for your prayers kind replies! It means so much to me.

    I realized this about a week ago, and it really helped me emotionally. I’ve been a cancer patient for three years. I’ve endured surgeries, waited for pathology reports, made countless trips for bloodwork, had chemotherapy, immunotherapy, more surgery, and regular follow-up visits. So, what’s new? Nothing! And I mean this in a positive way! Nothing’s new! We did it! We got through it! We’ve had many, many wonderful moments! We’ve enjoyed fabulous vacations! And we’re still here!

    I hate it that we spent 3 years worrying that the GYN cancer would recur. It was absolutely a valid concern! But what a waste of time and tears that turned out to be! So, we’re not doing that again! We will follow advice, do whatever…but I’m not worrying about it anymore! (The uncertainty in this last diagnostic process drove me nuts, but with a plan, I’m OK!)

    My “chemo teach” appointment is today. I’m thinkin’ that shouldn’t take too long, right? 🤣🤣🤣

    I hope your recovery is going well, Prayer2023. Prayers for your pathology reports.

    Love to All,

    A

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    edited August 2023 #36

    A,

    So glad to hear you have a plan in place and that you're feeling more positive about your plans. LOL at your chemo class! You should ace that one for sure.

    It's been interesting to me how they refer to your lung cancer and the staging and treatment. When my endometrial cancer recurred and metastasized to my lungs, they specifically referred to it as metastatic endometrial cancer and not lung cancer, and staged me as 4B. I guess they all have their ways of describing things. (Just like different pathologists phrase things differently in scan reports!)

    Best of luck to you with your treatments!

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #37

    Hi, Fridays Child!

    Thank you for your kind words! The chemo teach was fine, but I wasn’t anticipating it being so emotionally upsetting. When she went over the list of medications she was calling in for me it hit me hard. I know this combo is supposed to be more easily tolerated…but boy, that list looked very familiar….everything for nausea, vomiting, and headaches. Oh, great….Here we go…..

    Oh….I’m glad you brought it up about the staging. I don’t have metastatic FTC. Like you, that would make me Stage IV. All the drugs they are giving me are very different than what I would get if it was metastatic FTC. I have primary lung cancer, adenocarcinoma. A whole new cancer. So, it’s referred to as a “second primary cancer.” The day I had my needle biopsy I asked, “Will someone be able to determine from the pathology if this is metastasis, or new lung cancer?” Yes. Since my FTC was also adenocarcinoma, and there is also a lung cancer type with that label, I wanted to be sure that someone was looking for the difference. On the pathology report there were 3 different stains they ran that all revealed the primary LC diagnosis.

    ❤️❤️❤️, A

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    edited August 2023 #38

    Hi, A,

    Sorry, I read your posts where you mentioned recurrence and totally overlooked where it was a new primary cancer. It's been a hectic couple of weeks so I should have paid closer attention!

    In any case, I hope everything goes well for you. Did they mention Aloxi for nausea? They just automatically included that in my infusion. Supposed to last up to 5 days. It worked well for me. I hope they control your side effects better this time. I had Zofran to take at home if I needed it but did not.

    Praying for you!

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #39

    Certainly no need to apologize! Especially because the title of the thread references a recurrence, it’d be easy to miss!

    I don’t know of the Aloxi for nausea. I’ll askThey giving me Zolfran…..which I can’t say worked too well last time and it didn’t touch the nightmare stomach lining and acid issue. :(( The steroid they’re giving me at infusion is also prescribed for me to take days 2,3, and 4. Doing research last night, there are many legitimate websites that discuss steroids and that the are known to assist in the effectiveness of chemotherapy. Didn’t know that! Last time I made a fuss about not wanting steroids to avoid insomnia and other side-effects, so that’s probably why they weren’t offered, but no one mentioned they might make the chemo work better. I’m going to try to take them this time.

    Thank you for the prayers! I need those! I’m terrified to get that infusion Monday, but I remembered yesterday the mantra I adopted last time to make it better! I would repeat, “Let’s kill some cancer cells today!”

    ❤️, A

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #40

    A,

    Good luck tomorrow with your infusion. I did have steroids before infusions and I was able to sleep well, but had a welcome surge of energy just before the chemo effects kicked in. I am allergic to the contrast dye for scans so they also prescribe it for me before any scans. When you are feeling better, let us know how you are doing! We are thinking of you. ❤️

    Denise

    https://www.mdanderson.org/cancerwise/how-do-steroids-work--in-cancer-treatment.h00-159385890.html

    What are steroids used to treat? How are they used in cancer treatment?

    Inflammation is your body naturally responding to an event, whether it is trying to heal a wound or fight an infection. Both of those are good things, but they can sometimes cause pain. Steroids can help bring down inflammation and in turn can help manage pain.

    In cancer treatment, steroids have multiple roles. First, they’re sometimes a part of the cancer treatment itself, such as with some lymphomas and multiple myeloma.

    Second, they’re very effective at bringing down nausea and vomiting related to chemotherapy.

    They can also play a role with CT scans, which take images of your body to locate cancer for initial diagnosis as well as throughout treatment to see how the cancer is responding. To get clear images, a contrast dye is used, but some patients are allergic to it. Steroids can help control that allergy so that patients can safely get the contrast dye and undergo CT scans.

    In addition, MD Anderson research has shown that steroids can help ease cancer-related fatigue, which is different from the tiredness you may feel after a long day. Typically, your energy level is much lower than it was previously, and you can't really pinpoint one cause. We’ve seen that a small dose of steroids can help boost energy to where patients can have a better quality of life. It’s important to note that in the case of treating fatigue, steroids aren’t affecting the cancer, but they’re a valuable tool to help improve your energy level as you're going through cancer treatment.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #41

    Thank you, Denise!

    It’s 6:00am post-infusion day and I feel fine! (We know that won’t last, but I’m enjoying it at the moment!) So, much for quick infusion time…They started over an hour late and then my potassium level was crazy high…so they had to retest…and then it was normal….must have been a fluke?

    Thank you for all the steroids info! I didn’t seem to have much trouble falling asleep last night, so that’s good! We’ll see how today goes! I like the idea of steroids helping with fatigue. A common phrase here during chemo and 2 years of Zejula was, “OK. I have to sit down now.” That fatigue ended when I quit the Zejula over a month ago. It’s been a welcome break…but I expect more on the way!

    Thanks to you all for being so helpful & supportive. I haven’t asked anyone how worried I should be at this point of an FTC recurrence. For right now, it seems like I have bigger fish to fry! And MDA will be watching my entire torso very closely for some time to come!

    ❤️❤️❤️, A

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