Jan 23, 2020 09:28AM KBeee wrote:
Hoping all comes back benign.
Meet others concerned about developing a recurrence or metastases.
Posted on: Sep 18, 2019 03:29PM
I have to schedule an endoscopic biopsy due to symptoms of concern to my oncologist that have not resolved.
Anyone experienced Mets to the GI tract? I’ve read that the main primaries that metastasize to the GI tract are melanoma and breast. My onc said she has seen a few of her past triple negative patients metastasize to this area, though it’s not as common as lung or bone.
Posts 121 - 142 (142 total)
Jan 23, 2020 09:28AM KBeee wrote:
Hoping all comes back benign.
Jan 24, 2020 04:47PM pesky904 wrote:
So the endometrial biopsy was benign, yay! All the letter on my patient gateway says is “fragments of inactive surface endometrium.
For some reason, they are still insisting on a D&C/polypectomy. Why would I need that if there’s nothing there? I’m pushing back against it because it feels like an unnecessary procedure.
Jan 24, 2020 09:26PM wallycat wrote:
If there is a polyp, a biopsy does not remove those. It also only focuses on a few quadrants of the uterus where the hysteroscopy/D&C would remove the complete lining without missing any spots.
Jan 24, 2020 09:31PM - edited Jan 24, 2020 09:31PM by pesky904
It just seems annoying to have to have yet another procedure when it does not even seem that they know for a fact that there is a polyp. The intravaginal ultrasound showed a thickend endometrium with cystic spaces. The endometrial biopsy was negative. There's no indication that there's even any polyp in there. The CT scan I had before the intravaginal ultrasound showed a few sub centimeter fibroids but that was it other than one ovarian cyst. So another procedure to me seems unnecessary. Oh well. Post cancer life, I guess.
Jan 25, 2020 11:16AM wallycat wrote:
Pesky, you can certainly decline any procedures you choose to, but since you are so unwell, it may help. Worth it, don't you think? My ultrasound did not show polyps either, just a thickening. At most, they thought one polyp or fibroid, but I ended up with 3. Polyps are not something that are typically cancerous but yes, post cancer life.......
Jan 25, 2020 02:54PM KBeee wrote:
It is always within your right to decline a procedure, but if you do and then complain of symptoms a month or 2 later, they'll come back with "well you declined.....". Make the decision that you feel strongest about however, because it is your body.
Jan 26, 2020 09:40PM Brightsky wrote:Correct me if I’m wrong but didn’t your original CT show a 3mm hypodense liver lesion? Has anyone addressed that? I have a sub-centimeter hypodense liver lesion in the hepatic dome that was “too small to characterize”. I’m getting a follow up CT in a couple of weeks. I’ve been having awful GI issues. Bouts of diverticulitis (was in the hospital in June) lots of pain, nausea, constipation and now a lot of food intolerances. I had a lot of bloating, as well. Every morning I woke up looking 6 months pregnant. I went on a gluten free diet and the bloating resolved but I still have a lot of abdominal discomfort. I’ve also been having vaginal discharge. Lightish brown. No bleeding but a lot of pelvic discomfort. I’ve not had a period since chemo 4 1/2 years ago. I don’t know what’s going on. Dealing with these symptoms is making me crazy. Now I’m just waiting to find out what the CT shows. I was even tested for celiac disease. It was negative. I’m not eating much and losing weight.
Jan 27, 2020 11:25AM pesky904 wrote:
Yes, the same CT that saw the lesion arising out of the right ovary also saw a tiny liver lession - the 3mm hypodense liver lesion was noted as "likely benign" and not mentioned since. I was told that these "incidentalomas" are often found on imaging.
Feb 4, 2020 10:19AM pesky904 wrote:
Just venting because I'm frustrated. They called me to schedule the D&C/polypectomy but I just looked on the gateway and the appointment is not showing. Apparently the scheduler forgot to enter it. And frankly, now I'm just not going to bother rescheduling it.
My bone density scan was last week. The tech looked completely terrified and got all nervous and was acting funny, so I looked over at the screen and saw a huge blatant tumor on my femur - I'm assuming the same one they accidentally noted on my right side last year when it was really the left. Back then it was just a tiny little thing. They had no idea what it was but determined it was likely benign. It's definitely gotten bigger.
So I still have not gotten the results of the bone density test, which is what I'm really curious about - and I'm sure the reason I haven't gotten those results is because they are trying to figure out what to tell me about the femur lesion.
The same day of the bone density scan, I had a thyroid ultrasound. No results from that either, even though my oncologist last time I saw her said the right side of my thyroid felt much larger and firmer than the left and she suspected there might be a nodule.
The length of time it takes to get my test results is getting longer and longer the further out I get from active treatment.
On top of that, my GI troubles have gotten worse. I still feel full constantly. I drink TONS of water daily (always thirsty) and constantly have to pee but still barely move my bowels, but ALWAYS feel like I have to. When I do, there's always undigested food. I feel worse when I incrementally add more fiber to my diet - I get insanely bloated and still constipated.
My vitamin D levels went down even after taking 16 weeks of 50,000 iu prescription. Clearly there's a malabsorbption issue or something. My digestive system is just destroyed from treatment. I'm so tired of feeling like garbage all day every day.
Feb 4, 2020 11:13AM Trishyla wrote:
I was reading through all your posts, Pesky, nodding my head at all your symptoms and issues. Like you, I had horrible digestive problems since completing treatment. The bloating, the feeling of fullness, the problems with bowel movements. My poop was even the wrong color. (I know, TMI) I felt very much like I did when I when I had C-Diff years ago.
My system was so completely out of whack that I dieted and exercised rigorously for an entire year and lost exactly one pound. Talk about discouraging.
Then one day my daughter and I were talking and she pointed out that unlike AC and Taxol. Xeloda is an oral chemo. She wondered if it had destroyed all of my good gut bacteria. Bingo. It was like a light went on in my head. Of course an oral chemo destroys your gut bacteria. How could it not?.
Since then I've embarked on a mission to repopulate my gut with good bacteria. Probiotics (4 or 5 different brands to get as many strains as possible), fermented foods (pickles, sauerkraut, kombucha), you name it I've tried it. And it worked. I'm finally getting back to normal. I've even lost 5 pounds in 8 weeks.
Don't know if that's your problem. but it's certainly a possibility.
Good luck. Hope you get some relief soon.
Feb 6, 2020 03:48PM pesky904 wrote:
Trishyla, that's so great that you have had such luck with probiotics! How long did it take? I've taken them all through treatment - finished Xeloda in late 2018.
The ONLY thing that seems to make me feel better is just not eating - which is obviously not a solution. I still feel bloated and full if I don't eat, but the nausea is less.
I'll be curious to see what the endocrinologist has to say at my upcoming appointment (Feb 19). Mostly curious about my low vitamin D even after 16 weeks of mega-dose prescription.
Not surprised about my bone density scan results, given what seems to be some kind of malabsorption issue and low levels of vitamin D, iron, B12, folate.
[DXA showed T value of -1.9 and Z value of -1.4 for L1-4 (funny, this is where my bones seem to be in better shape, but it's where I have had the most pain)
T value of -2.2 and Z value of -1.8 in femoral neck (assume this was calculated using right hip, since I have a big weird tumor in my left femur)
T value of -2.6 and Z value of -2.1 in forearm.]
Also glad I have endocrinologist appointment coming up now that I just got my thyroid ultrasound back. Results were:
Indication: Enlarged thyroid gland
Thyroid gland size (mm): right lobe 16 x 45 x 14, left lobe 14 x 42 x 60, Isthmic thickness 3
nodule 1: size 14 x 10 x 9; location - mid; solid; isoechoic; margins - smooth; vascular flow - minimal
nodule 2: size 8 x 8 x 8; location - inferior; solid; isoechoic with central portions of decreased echogenicity; margins - ill-defined; vascular flow - minimal
Impression: right sided thyroid nodules the larger one amenable to FNA
I don't think I want FNA, since they can only FNA the larger one, which is the one that sounds totally benign. The smaller one is the one I'd be more concerned about.
This is all so annoying. Trying to find the source of my GI issues has now led to the discovery of a 3mm hypodense lesion in the liver, a lesion with increased uptake in the left femur, a 2.5 cm lesion arising from the right ovary, a thickened endometrium, now 2 thyroid nodules...it seems they never fix the problem but seem to keep finding more things that have to be followed up on. Which is making me just want to have them stop looking at everything altogether. Ugh.
Feb 10, 2020 03:37PM pesky904 wrote:
Update: My hysteroscopy/polypectomy is scheduled for Friday. I've been considering canceling it because I can only take so much time for medical things and my onc called me on Saturday to say my thyroid ultrasound was suspicious for malignancy. I have endocrinologist next Weds and will learn more about all that. This is all so exhausting.
Feb 11, 2020 08:26AM - edited Feb 11, 2020 08:27AM by KBeee
It is exhaisting, but you've been having concerning symptoms for quite a while and have wanted answers, so follow through so you can get closer to getting your answers. Hoping all comes out for the best.
Do keep us posted.
Feb 11, 2020 03:42PM pesky904 wrote:
Thanks. I'm going to do it only because then it'll be over with and they won't keep calling me to reschedule. I have no concerns about a bad outcome. As far as I can tell, my symptoms are indicative of a GI disorder and, as some here have noted, sound mildly similar to ovarian cancer, but this procedure doesn't look at the ovaries and I don't really have symptoms of uterine/endometrial cancer, so this feels unnecessary to me.
I'm not BRCA positive. I had two very brief instances of bleeding last fall, nothing since then. The endometerium was only slightly thickened at 7.2 mm, and the endometrial biopsy was negative, as far as I know. So a full D&C/hysteroscopy/polypectomy just seems overly cautious. I'm still not clear why my gyn decided to do this procedure (rather than watch and wait and re-ultrasound at my next annual) even after the negative endometrial biopsy. I asked the nurse who called me for the pre-procedure call and she just said the doctor wouldn't be doing it if she didn't deem it necessary. So who knows, maybe she has a high suspicion that there's polyps present, even though the only thing that showed up on the transvaginal ultrasound was an ovarian cyst and a few sub-centimeter fibroids.
Feb 11, 2020 07:01PM Fairchild wrote:
Pesky, I'm so sorry you're going through this! Have they considered doing anything to make sure the ovaries are ok? I ask b/c I was told to have mine removed, you know, in December so they could biopsy them. I really was glad to learn that the cyst was just a cyst. I completely understand how disruptive all of this is-- I've been through 3 separate "false positive" workups for suspected cancer since I completed treatment a year ago, and it's just so time-consuming. But I did it because I just felt it would be so upsetting to my kids if I died b/c of failing to follow-through with a test. But honestly-- after a while it's just a LOT! I'll be following along more closely, now that I know this is happening. Do please keep us updated....
Thinking about you,
Feb 11, 2020 07:50PM pesky904 wrote:
Thank you, Fairchild, and I’m so glad to hear your cyst was just a cyst!
It is so frustrating and tiresome to have them want to follow up on every little thing. As for the ovary, they are doing a repeat ultrasound in about 2 months.
Feb 14, 2020 04:37PM pesky904 wrote:
Just back from my hysteroscopy with D&C and polypectomy. They also did a myomecyomy.
I’m in some pain and very tired, but so far no heavy bleeding or fever or anything worrisome. Bad nausea, but who knows what that’s from because I’m always nauseous and I haven’t eaten in 22 hours.
I have zero appetite. I thought I’d be starving by now. I still feel like last night’s dinner is sitting in my stomach. My stomach should be completely gurgling and churning after this long without food. Instead I have a dull ache in the center below my ribs, no stomach growling, and absolutely zero appetite.
I feel like I’ve gained like 10 pounds just this week (prior to the procedure today) and I am constipated but (TMI) have what feel like incomplete bowel movements every few days that are all very pale slightly yellow-hued brown with lots of what I imagine is undigested food (nothing that’s obviously something I’ve recently eaten, but plenty of black specks or white specks). I’m fairly certain it’s food because my liver enzymes are normal and the stool is very sticky and heavy, but is not white or gray.
Next up, endocrinologist Wednesday.
Ah, the joy ofafter effects of chemo...
Feb 17, 2020 12:53PM pesky904 wrote:
My gosh, 3 days since my hysteroscopy/D&C/polypectomy/myomectomy and I feel so nauseous and bloated. But not bleeding and no discharge since the first day. The constipation was so bad, I broke down yesterday and took 2 senna tablets. I finally had a bowel movement (after some serious painful cramps) and it was really reddish brown. Makes me think there was blood in it.
Boy, chemo really does a number on our bodies, doesn’t it?
Feb 19, 2020 11:36AM pesky904 wrote:
Just back from my endocrinologist appointment. He hadn't even looked at my chart and was not even aware of the thyroid nodules that my oncologist was so concerned about. That was frustrating. He left the room to go look at the report (not the images, just the written report) and then came back and said he was setting up a biopsy of the larger nodule but the smaller one is too small and in a hard to biopsy position so we'll have to re-ultrasound in a few months.
So the nodules are on the right side of the thyroid, so my left side of my thyroid is actually much, much larger than the right now for seemingly no reason. (Both sides were always uniform in size - I've had thyroid scans in the past and never had the left side be so much larger.) He never gave me any reason why the left side is suddenly so enlarged.
For the low vitamin D/osteopenia-osteoporosis, he said even with the amount of treatment I had, I'm much too young to have osteoporosis. His first step is to try to up the prescription vitamin D from once a week to twice a week (my vitamin D level went down after 16 weeks of once a week high dose). Basically, his reasoning is my digestive issues are keeping me from absorbing 50,000 i.u. once a week, so if he gives it to me twice a week, maybe I'll absorb some of it.
I'd rather get the digestive issues figured out and find out why I'm not actually absorbing it in the first place. So far I've been told I have mild gastritis and mildly slow gastric emptying, but not been told how to freaking fix it.
I'm irritated. I had a hysteroscopy/D&C/polypectomy/myomectomy on Friday so I still feel like I'm PMSing times a thousand, on top of having been constipated and feeling constantly full for over a year now. And my weight has not fluctuated by a single pound, despite going to the gym at least 5 times a week and eating healthy tiny meals.
Mar 2, 2020 02:14PM pesky904 wrote:
Just updating as I know there's some folks with similar issues following along.
Had a follow up with the GI this morning. Just dropped off a sample at the lab for a fecal calprotectin test.
He thinks my thyroid could be involved with some of these issues and is pushing for me to see the endo again. He also instructed me to do the prep for a colonoscopy (even though he's not going to actually do a colonoscopy) so that we can at least get me "cleaned out" and see how things look after that. So yipee, I get to do a colonoscopy prep and will probably have to do it again for an actual colonoscopy as well. :(
I live in a relative's basement since cancer destroyed me financially. They are going on vacation in May, so I flat out told the GI I am not doing the colonoscopy prep until they are away on vacation because I don't even have my own bathroom here.
Anyway, that's the update. Thyroid biopsy tomorrow, after that, who knows.
Mar 2, 2020 04:57PM mightlybird01 wrote:
I so sorry for what you are all going through. I have not read the whole thread but still wanted to offer my thoughts. I'd start out with a little story, that just happened to me.
I finished chemo 5 months ago, and have been doing great since pretty much the week after. I did not have any complications during chemo and not after. About 4 weeks ago, my husband decided he wanted to safe the climate and no longer consume dairy products. I was not so convinced but decided to support him in finding dairy alternatives. Long story short, I started making soy milk yogurt which we both really liked. While I was not planning on giving up my dairy milk yogurt, I still started eating that soy yogurt on a daily basis, just because it tasted so good. Everything seemed fine but about 3 weeks into my new soy yogurt love, I noticed some slight nausea 1-2h after breakfast, which is when I had my soy yogurt. It was very mild, and I did not think much of it. Fast forward to last week, when we had a party and I cooked mexican food, with a lot of different types of beans. For the first time ever in my life, I made those beans from scratch instead of using canned beans. I soaked and boiled them. However, I did not drain and rinse the soaking water but just cooked the beans in that soaking water and afterwards consumed that leftover soaking water with the beans. We had lots of left overs, so hubby and I were eating beans for 5 days running. At the end of the 5 days I experienced severe stomach cramps and nausea, bloating and just so full, I could not eat. My stomach and whole digestive system seemed like paralyzed, I still had undigested food in my stomach after 14h of eating it. This was highly unusual for me, I have never had any GI issues to speak off. It got so bad, I even had shivers and had to lay on the coach for one day. My body had launched an immune response to whatever it was finding offending my GI system. I did not eat anything but some fruit the next day and was much much better the day after. Until I ate my soy yogurt for breakfast that following day. Now, after 1h, I had bad stomach cramps, bloat and nausea again. After sitting down and doing research I decided that what seems to happen is that I had developed a rather severe intolerance to legumes (which includes all types of beans, soy, but also peanuts) by consuming them in high quantities (and wrongly prepared (one needs to discard the soaking water before boiling the beans!)). I think my daily consumption of soy yogurt for the past 3 weeks had sensitized my body, so when now I did eat those beans on top of it, it was too much and whole digestion just totally stalled. AFter realizing that I have eliminated all forms of beans/soy/peanuts from my diet and 3 days later I was totally fine.
Your symptoms sound just like mine when I had this incidence of soy/legume intolerance, a stalling of digestion, bloating, nausea and constipation. I am fairly certain it has nothing to do with chemo, or cancer, but of course our mind likes to jump to that conclusion right away.
I would recommend to you to find a certified nutritionist, who could help you with an elimination diet, finding out what types of food could be offending to you. Somewhere in this thread you say that you get nauseous after drinking "ensure". This is already one hint, that the ingredients in this drink cause a food intolerance too you. Try to not drink it for several weeks and see if you improve. Unfortunately, with you having dealt with this for some time, you will need to stick to an elimination of certain foods for some time before you see improvement, once you found that offending type of food. That's where the nutritionist would come in to give you detailed instructions. Maybe you can do it by yourself keeping a detailed journal of what you have eaten but I think it may be quite difficult without the help of an expert.
I think for the immediate future, I would start with eliminating all sources of soy from your diet, and ideally all legumes Including peanuts. It is a very common source of intolerance and really hard to eliminate because soy is in many foods nowadays. BTW, soy has also has been shown to negatively affect the thyroid gland.
I hope this makes sense to you and opens a new path forward for you to try and resolve your issues.
Mar 4, 2020 11:46AM pesky904 wrote:
Thanks, mightlybird01. We've ruled out dietary intolerance to any specific food. It's basically any and every food that makes me feel immediately full, and the nausea is even if I don't eat. And just this morning, I received word that the fecal calprotectin came back normal, so no inflammatory bowel issues.
I had thyroid biopsy yesterday on just the larger of the two nodules on my right thyroid lobe. The initial ultrasound indicated a nodule in the mid right lobe and a nodule in the inferior of the right lobe, with the left lobe being enlarged with no nodules.
Yesterday at the ultrasound-guided biopsy, the doctor doing the biopsy said he saw a nodule on the left lobe. He actually said it looked like it was "the same nodule as the one on the right, but separated into the left lobe" - whatever the heck that means. So either that one on the left side either just developed in the last few weeks or it was missed on the first ultrasound.