Sep 18, 2019 04:44PM BevJen wrote:
I think that mets to the GI tract are more characteristic of lobular cancer?
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.
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Sep 18, 2019 04:44PM BevJen wrote:
I think that mets to the GI tract are more characteristic of lobular cancer?
Sep 18, 2019 05:02PM VLH wrote:
Pesky904, if you're comfortable sharing, what were the symptoms that caused concern? I hope your biopsy is favorable.
Sep 18, 2019 05:16PM - edited Sep 18, 2019 05:16PM by pesky904
Yes, my understanding is that they are rare for any type of breast cancer, but my oncologist said she has seen it in a few of her past triple negative patients. My symptoms were early satiety (I feel extremely uncomfortably full after just a few bites of food), extreme nausea that just won't get better despite the fact that I have been off chemo since last October, some abdominal fullness and pain ...actually I wouldn't even call it pain, just discomfort. And constipation. My biggest complaint is the nausea. It's been constant and really annoying. Plus the fact that my stomach feels full and almost stretched after only small amounts of food.
Sep 18, 2019 05:24PM FarAwayToo wrote:
Pesky, this sounds more like ovarian cancer symptoms. Not saying that's what you have, but while evaluating GI tract, it may also be worthwhile to check with a gynecologist. Sorry for my 2 cents and unsolicited advice.
Sep 18, 2019 06:05PM - edited Sep 18, 2019 06:07PM by pesky904
That's very interesting. No one has mentioned ovarian to me, and you would think that having had breast cancer, that might be something they would consider with thes symptoms.
I did show fibroids in one ovary on a scan. But my hormone tests recently showed that I’m in menopause at age 45 from the treatment. My last period was June 2017, when I was 42 years old.
Sep 18, 2019 06:38PM wallycat wrote:
I had severe nausea in my 30s and annual exam incidentally found a walnut sized dermoid on my ovary. As soon as it was removed, the nausea was gone. Mine was b-9.
Sep 18, 2019 09:30PM pesky904 wrote:
I haven’t even had a Pap smear since 2016. Ever since my tnbc diagnosis in 2017, everything else has fallen by the wayside. Especially since my husband left and kicked me off his great insurance so I’m dealing with basically Medicaid now.
Sep 18, 2019 11:31PM VLH wrote:
That sounds miserable, pesky904. I agreed that it might be wise to rule out ovarian cancer. It's tough getting along without good insurance. I'm sorry that you are in this predicament. Does Medicaid pay for a consultation with a gynecologist so you can discuss the symptoms if the biopsy doesn't identify a cause?
Sep 19, 2019 10:39AM pesky904 wrote:
VLH, I'm not sure, I'll have to look into what's covered in terms of gynecology. Yet another appointment to make, I guess.
Being nauseous all the time has been pretty annoying. I wasn't all that nauseous during chemo - I was pretty lucky with side effects.
Sep 19, 2019 12:18PM wallycat wrote:
Pesky, do you have a planned parenthood in your area. They work with people on payments. They are full reproductive care (not just the imagined "only abortions"). They may be able to do a quick ultrasound to rule out any pelvic masses so one less thing to deal with.
Best to you.
Sep 20, 2019 01:00PM pesky904 wrote:
I don't have a planned parenthood near me. Also, I'm truly destitute right now thanks to my husband abandoning me (story for another time), so I couldn't even do a payment plan.
The GI specialist did say my abdomen felt "full." I assume he meant swollen. That was at 11:30 in the morning and I had not eaten since the late afternoon/early evening before. I had a tiny breakfast today at 9:00 a.m. It's 1:00 p.m. now and my stomach still feels so full like I ate a huge meal.
It's so annoying. I hope they can figure out what is going on. I haven't even heard back from them to schedule the endoscopic biopsy yet. I'm sure I will have to call them. Why can't healthcare providers ever get their act together? So much seems to be placed on the patient to follow up on when we already have so much to deal with.
Sep 20, 2019 02:55PM wallycat wrote:
Pesky, PP offers free services to those in need. Have you contacted the hospital business/finance dept. to see what they would be willing to do? Many big (even our very small ) hospitals have write-offs/charity opportunities and you may qualify. If you do nothing, your ugly-ex wins, never mind feeling like crap is no one's idea of fun.
If there are women's shelters or social services, you can see what is available. My gyn in WI worked for a women's shelter to offer free gyn services on her off hours. I know you are angry about what your ex did. I've been there (boyfriend stuff) and understand how frustrating, helpless and angry and scared one can be but if you don't seek help or assistance or make inquiries on your own behalf, he wins. Don't let him.
I hope you can find someone who can help. What area of the country are you in?
Sep 20, 2019 03:38PM Topsy3 wrote:
pesky, sorry for the intrusion, but Medicaid should cover a well woman exam. You just need to find one that takes your particular Medicaid insurance and schedule it. You dont need a referral from your pcp. And if you explain your current situation while scheduling, they may be able to get you in more quickly. Good luck to you.
Sep 20, 2019 04:38PM pesky904 wrote:
Thanks for the tips, guys, much appreciated! Kind of weird that no one, including my oncologist, has mentioned that these symptoms could be ovarian.
Sep 21, 2019 09:30PM - edited Sep 21, 2019 09:56PM by KBL
Hi, Pesky904. You are describing exactly what I was feeling when I went to a gastroenterologist. It started for me last October. I would barely eat a few bites and be full and very nauseous. I lost ten pounds very quickly. My primary sent me to the gastro. I had an endoscopy in April. He told me he didn't really see anything but a little gastritis but had taken some samples to get biopsies. I got called in to my primary on May 3rd. I had cancer in my stomach. They said they needed more samples because they classed it adenocarcinoma because they didn't know where the primary was.
I had another endoscopy on May 17th. They found the cancer in two spots in my stomach. Testing came back as breast cancer, Stage IV de novo.
I had a mammogram, ultrasound, and breast MRI. They don't see the cancer in my breast.
I am not triple negative, but I did have the same symptoms you are describing.
Sep 21, 2019 09:58PM pesky904 wrote:
KBL, I’m so sorry to hear that! Do you mind if I ask if you had any other specific symptoms? Were you constipated? Did your stomach feel full even if you hadn’t eaten for hours and hours? Did you have any abdominal pain? (I think my abdominal pain is due to constipation).
When the gastroenterologist felt my stomach he said it felt a little full, and at that point I hadn’t eaten in something like 15 hours. Sometimes just drinking water makes me feel overly full.
I haven’t lost any considerable amount of weight, though when they weighed me at the GI, I was 4 pounds less than when they weighed me at the oncologist 3 weeks ago, but that could just be a difference in the reliability of their scales and water weight, etcetera. But anyway, none of my pants fit right anymore because my abdomen is so much bigger now.
Sep 21, 2019 10:43PM pesky904 wrote:
KBL, can I also ask where did they take the biopsies from? My understanding is they’re going to take s few samples from along the upper GI tract but I’m not really sure. They haven’t even called me to schedule it yet. Their computers were down when I was there on Wednesday so I’ll have to call them on Monday to remind them that I still need to be scheduled
Sep 22, 2019 09:16AM - edited Sep 22, 2019 09:38AM by KBL
The first time they took it from the duodenum third part, duodenal bulb, stomach antrum, stomach angularis, and the stomach body. They found it in the angularis. The second time they found it in the angularis and the gastric body. When they got the results, the gastro was floored. He said it didn't look like there was anything I'm so grateful he took biopsies.
I have hypothyroidism, and I've always had constipation, so I wouldn't have been able to tell the difference.
I know when I started not being able to eat, I would tell my husband I couldn't eat any more, and he would try to push me to keep eating. I just couldn't. I did eat, but not much. I've been on hormonal therapy now since June. I'm still not able to eat as much as I did before, and I still get nauseous, but it's not quite as bad. And I haven't been able to put the weight back on either I thought maybe it was because my hypothyroidism turned hyper, but we lowered my meds, and I still haven't put the weight on.
I'm now having issues with horrible phlegm in my throat for almost four weeks that's extremely thick and feels like I'm choking sometimes. I see my oncologist tomorrow and will be letting him know.
Feel free to ask as many questions as you want. I'm no expert, but I can let you know what is happening with me as time goes on. Please keep me posted on what you find out.
One other thing. I’ve been anemic since October as well.
Sep 22, 2019 11:11AM wallycat wrote:
KBL, I'm so sorry you are dealing with this. It is the sort of nightmare that goes through my head when I worry about a recurrence. Especially lobular, which is sneaky and goes places it shouldn't.
Did you require any surgery or any other treatment besides the ibrance and femara? How do they monitor you?
The human body sure is a quagmire of stuff. SOmething so innocent as nausea or headache or peeing too much, and we are forced to put the antennae up and worry.
Hope your phlegm thingie is just a cold.
Sep 22, 2019 11:57AM KBL wrote:
Thank you so much, Wallycat. I really appreciate it. I have not had any surgery or chemo, only hormonal treatment so far. Right now we are monitoring my tumor markers. They were up in the 200 and 400 range. I’ve had them tested every month. The first month they dropped about 30-40 points. Last month they dropped .4-4 points only but still dropped. I’m having them tested again tomorrow, and now that I’m past the three-month mark, I have asked for a CT scan. I have to get it approved first, so I’ll probably have it in October.
Besides the golf ball in my throat and the phlegm, I’ve had no symptoms at all of a cold, no sneezing or runny nose, and I don’t feel sick. It’s really weird. I thought it might have been the gastritis acting up, so I started on another month of my prescription for that, but it hasn’t helped. I tried Mucinex and am taking an allergy pill. Nothing is making it go away. I have no clue.
I am now feeling the lymph nodes in my neck and under my arm are swollen also, so these are all things I will be telling him tomorrow. This all just started in the past month. I’m wondering if I have a tiny infection that’s just not causing major problems yet.
Sep 22, 2019 12:03PM pesky904 wrote:
KBL, is Reglan the prescription you take for gastritis? They tried me on that last fall after I had a test that showed delayed gastric emptying. It didn’t really help me much. So I’m not sure if I actually have gastritis either.
Sep 22, 2019 12:37PM KBL wrote:
No, mine is Pantoprazole. Even thought it’s not helping, I want to finish out the whole month and not stop in the middle. I took it for two months when I was first told I had gastritis. That was all he told me to do. I did have one more refill, so I figured I’d try it.
Sep 22, 2019 01:16PM pesky904 wrote:
Yeah, I gave Reglan a good 3 months but then stopped because it wasn’t helping and I was tired of taking meds.
I just ate a really small lunch and here comes the nausea. My stomach feels so big it could pop. :
Sep 22, 2019 01:23PM KBL wrote:
I hope they can schedule your endoscopy soon. I had no pain at all after either one of mine. It does take a little while for the results. That’s the only down side. The difference between us is you've been diagnosed before and this was my first time. I’m sure you know how hard the waiting is. I’m sorry that it feels so crappy. I know we want to know what the heck the problem is.
Sep 22, 2019 01:31PM pesky904 wrote:
Thanks. I’m hoping the problem is really something like gastritis and Reglan just wasn’t the right med for me. Or maybe I have an ulcer or something
Sep 22, 2019 02:47PM KBL wrote:
I hope it’s something that can easily be taken care of for you. It was six months before I had an answer. Please keep me posted.
Sep 23, 2019 09:51AM pesky904 wrote:
I had to schedule my endoscopy for Friday November 1. It was the only time available at a convenient location, otherwise I would have had to find a ride to and from a more distant location.
So I have the procedure scheduled for Nov 1 and then a follow up scheduled for exactly 2 weeks later because they said any biopsy results will take at least s week and a half to come back.
Ugh. I really need to find a new job and start building toward a new life (I can’t sleep in my brother’s basement forever!) and these appointments and unanswered questions just seem never ending.
Sep 23, 2019 08:57PM KBL wrote:
I’m so sorry you have to wait so long. That stinks. I would just make sure when they do the biopsy that they take enough samples the first time so you’re not in the position of being asked to do another one. That was a real pain. Please keep me posted.
Sep 23, 2019 09:04PM pesky904 wrote:
I am sure they won’t take enough samples. :( They seem pretty sure it’s gastritis or an ulcer.
Something I’ve noticed happens too much is radiologists and specialists doing biopsies tend to go into the procedures already having made up their mind what they’re looking for and that’s how mistakes happen and things get missed
Sep 24, 2019 06:21AM KBL wrote:
That’s just sad. Hopefully when they’re down there, if they don’t see either of those, they’ll do the right thing. It ended up costing me for another endoscopy because they didn’t take enough the first time. Without that first one, I would have never known I had cancer at all until it was probably too late.