Swollen, bloated Abdomen

besia · January 2021

I was diagnosed with triple negative lobular breast cancer in 2015. I had a skin saving single mastectomy followed by DIEP flap surgery in 2016. All was great until 2019 when I had a local recurrence. I had my nipple removed along with several lymph nodes (two positive for cancer) had radiation and did a course of chemo (abraxane.) In February 2020 we learned the cancer had spread to spine/ribs, which caused several fractures. I had radiation, which allowed fractures to heal, but additional spread to liver was diagnosed in May.

In June I started Xeloda, which seems to be keeping cancer from further spread and I also get xgeva shots. The problem is that my stomach is incredibly swollen and no one knows why. Doctors ruled out fluid or masses, and now have basically thrown up their hands in defeat.

The bloating began in Feb 2020, and gradually increased from once a week or so to everyday. It seems that gas is accumulating in my stomach over the course of the day so by mid-afternoon it is extremely tight and hard like a melon. This makes it difficult to breathe. Overnight it goes down a little (in the morning I pass a lot of gas) but swells up each day.

I am in extreme discomfort. My waist has increased by 10 inches, and the increase occurred in less than a month. Sometimes my stomach also hurts, and my back is stressed from the extra pressure. None of my clothes with a waistband fit and I look like I am six months pregnant. Has anyone else experienced anything like this? I'm getting desperate; I have limited time left and hate that I am wasting some of it being incapacitated and swollen like a tick!

Thanks, B

moth · January 2021

Besia, that sounds horrible.

have you had a consult with a gastroenterologist? Do you suffer from constipation?

Are you able to exercise and does that help at all?

Only other thing I can think of is trying to change your gut biome. Maybe cut/eliminate simple carbs For a month while supplementing with probiotics. Would your Drs be ok with you trying that?

besia · January 2021

Thanks for the commiseration. I have seen GI doctor but she was baffled. Have tried all the usual stuff---diet changes, gas reducing meds, activated charcoal, exercise, magnesium baths, swallowed steroids, acid reducers, protonix, you name it. Nothing really works. I am not constipated, but have severe espohaghitis, caused in part by eosinophils. The weird part is you would think someone had something like this before.

moth · January 2021

Have you been on neuropathy causing drugs? I'm just wondering if there's some mild neuropathy in the gut causing lower motility. There are tests for gut motility and also meds to increase it.

So puzzling. Can't say I've heard of anything like this

besia · January 2021

That's an interesting thought. I have neuropathy in my feet and hands from several rounds of chemo. Will talk to my doctors to see what they think. Thanks!

SandiBeach57 · January 2021

Are you lactose intolerant? Xeloda does have minute amt of lactose filler.

besia · January 2021

Not lactose intolerant and this actually predated the xeloda. (Although it has gotten worse since I started.) But thanks for suggestion. At this point I'm willing to consider anything, because doctors just keep saying things like, "Wow, that's weird." Seriously. That's what they're telling me. Like that's helpful.

Anonymous · January 2021

I've read a few instances of new food allergies/intolerances after chemo. Have you tried an elimination diet?

ShetlandPony · January 2021

The doctors and radiologists that ruled out fluid or masses, and the facility where you are treated — are they really good and do they have lots of experience with lobular breast cancer? What kind of scan did they use? Has this cancer been easy or difficult to image?

besia · January 2021

Thanks for your responses.

I am being treated by physicians at Stanford and UCSF, and my main oncologist is one of the premier experts on Triple Negative breast cancer, which is why it seems so odd that they are mystified. And I have had endoscopy, CT scans, ultrasound, X-ray and MRIs.

Re elimination diet, I did this in past but not recently. However, they don't think it's related to chemo because it started almost a year after last IV chemo, and months before I started the xeloda...

I feel like a person in one of those NYTimes Magazine medical mystery articles.

Thanks again, B

ShetlandPony · January 2021

It’s the lobular part, not the triple negative part, that could mystify. I expect Stanford and UCSF know what they’re about. Do they have someone there with a special interest in lobular? As I understand it, fluid/ascites is best seen on CT with contrast. Make sure the radiologist was aware you have lobular as it can be subtle. I would not let them give up trying to help you. I would ask for referrals. Ok, it this is not cancer, then what is it? Because it is having some serious effects on QOL. Good luck and please let us know.

KBL · January 2021

Besia, you say they've done an endoscopy. Did they take any samples to biopsy? If so, what did the results say? ShetlandPony has asked me to comment, as I have stomach mets with ILC. I can say I haven't had any of your symptoms, but I'm sure it affects each of us differently.

I will just let you know regarding imaging that nothing sees my mets in my stomach, not PET, not CT scans, nothing.

I had the symptoms in 2018. They were rapid weight loss and inability to eat more than a few bites because of feeling extremely full. I then had an endoscopy, where the gastro took five samples. He said my stomach looked normal. He was extremely shocked that it came back as cancer in my stomach. With some deduction, it was found to be breast cancer in my stomach and not gastric cancer.

I'm not sure if any of this will help you. I hope you get answers. It's the not knowing that will drive you nuts. I hope you get some help. Keep trying.

besia · January 2021

Thanks again for all of your input. If I've learned one thing through this journey it's that nothing is "typical" so hearing your experiences/suggestions is really appreciated.

They took a number of biopsies during my endoscopy all of which came back negative. I was referred to a GI surgeon who said there is a rare form of lobular BC that can infiltrate deep in stomach lining so biopsies could have missed, so he initially wanted me to get PET scan to rule it out because (he said) my last CT w/contrast would not show it. However, for some reason he now says I don't need a PET scan. Huh? This seems really sketchy so trying to get to bottom of that, but in the meantime I am seeking a GI referral to investigate motility aspect.

If I can ask---where were you treated? And Shetland Pony, are you being treated by a specialist in lobular BC? If so, do you mind sharing details?

Thanks, B

ShetlandPony · January 2021

Besia, I think many of us have asked where to find a specialist in lobular bc, and realized that’s not really a thing. But I think if you are at a major cancer center that is research-oriented (as you are), and with an experienced breast cancer oncologist, you will be in good hands. (I am at an NCCN center. I know my onc has other patients with lobular mbc, because she will tell me things like, “I have another complicated lobular lady who did really well on x drug.” We talk, and I can tell she understands ILC. She is one of the senior breast oncologists there.) Also, if you look on the web site of the Lobular Breast Cancer Alliance you can see the doctors who are on the scientific advisory board, and what institutions they represent. You can look to see who has authored recent papers on ILC, too.

https://lobularbreastcancer.org/

But do pursue with the gastroenterologist. Sometimes we have problems that are not breast cancer. For example, several months ago I had been attributing all my fatigue to cancer treatment, and then I found out I had adrenal insufficiency. I supplemented with hydrocortisone for a while, but now my adrenal glands are back online. My onc sent me to the endocrinology department at the cancer center to look into another problem, and we were surprised to find this problem, which is not the one we were looking for.

Bloating...I hate to say this, but have they ruled out ovarian cancer?

KBL, you’re a dahling, dahling.

KBL · January 2021

Besia, I will private message you where I go. I must say at my cancer center, I do most of the work, asking for different things. If I say anything negative, they poo-poo it. My story is very weird. I’ll send you a link to it if you want to read it, but don’t feel obligated. I do like where I go, as when I do ask about different testing, they generally say yes to me.

Shetland, thank you. That’s so sweet.

I have to say I thought about ovarian as well. I would check every angle.

I know that ILC can affect the omentum as well. In one of my scans they thought they saw it but then the next one said no.

Do you have your tumor markers checked? I know in some they are not reliable at all, but I was curious.

besia · January 2021

Thanks again you guys. You have given me lots to consider and added motivation to keep pushing for what I think I need. It wouldn't be the first time I've self-diagnosed and found that I was actually right after pushing doctors to do something they thought was "unnecessary."

I have asked repeatedly about ovarian cancer, but apparently ultra sound/CT scans have ruled this out. Perhaps we need to revisit. Also, your comment re omentum is intriguing---especially since top symptom listed when I went to site discussing omentum cancer is----wait for it---

Abdominal discomfort or pain from gas, indigestion, pressure, swelling, bloating

In answer to your question My tumor markers don't seem reliable as there is no apparent correlation to spread/growth. CT scans consistently show no progression in my spine, and shrinkage of liver lesions, but markers have go up and down.

Best, P

KBL · January 2021

CT scans see nothing for me, not even the cancer I have. I’mvery hard pressed to trust imaging.

Maybe try to see if you can have an abdominal MRI, if that would help. I wanted one, and they said I don’t need it. Trust me, I’m of the opinion if I want it, they can just give me the script and I’ll pay for it myself. These people don’t have a clue. It’s so irritating.

besia · January 2021

Right? It's like doctors telling you how unusual or rare your situation is. Is really helpful for your treaters to say they've never seen your problem before? Hardly inspires confidence. If you've rarely or never seen what I have, shouldn't I be seeing someone else?

KBL · January 2021

Exactly. So hard.

LillyIsHere · January 2021

Besia, I am sorry you are going through this and I hope you will get some results soon. I just want to let you know that the only time I have been in a similar situation was when I was in the early stages of pregnancies. I know this may not make sense to you but just a thought, can it be your hormones may be messed up from treatments? Are you currently in any anti-hormonal treatments?

Bestbird · January 2021

So sorry to hear you are going through this. Lobular cancer unfortunately may not show up on scans because it presents more like a spider web or filmy substance than as a solid tumor. One thing is definite: lobular MBC has much more of an affinity for migrating to the GI area thank ductal does. I wish I could name another test that would help with regard to your diagnosis, as you've already had an endoscopy with biopsy. It may be worth a second and third professional opinion, and it's great that you'll be seeing a GI physician. Hoping you find answers soon!

ShetlandPony · January 2021

One of our ILC mbc members has an expert second opinion radiologist. I’ll work on more info tomorrow.

Cure-ious · January 2021

FES-PET imaging has been FDA approved and is good at picking up lobular, but apparently its still not widely available beyond Fred Hutchison Cancer Center in Seattle..

https://www.oncnet.com/interviews/fes-pet-imaging-...

KBL · January 2021

Curious, I didn’t know FES was already approved. I was going to enter a clinical trial to see if it worked for me, but it’s in Utah. That’s way too far for me to travel, and who wants to go to Utah in the winter? I turned it down.

BevJen · January 2021

Cure-ious,

When I originally read that article that you posted, I also thought it had been FDA approved. But I'm not so sure -- the article says this:

"FES-PET has been approved and is available in Europe; we are expecting it may be commercially available in the United States as soon as summer 2020. We hope that when it is available for clinical use, we can apply this imaging technique to identify lobular breast cancer in metastatic disease."

So the Europeans have approved it; but the article doesn't specifically say that it's FDA approved?

I am lobular and did ask my MO about it -- in the Baltimore/Wash area, she said the closest place with this kind of imaging might be U Penn in Philly -- but still not sure about the FDA approval.

KBL · January 2021

I don't at all want to highjack besia's post, but I have a related type of questions, sort of. I have no bloating and no pain, but for the last three CTs, It's been saying I have constipation, one even saying severe obstipation. I had a pelvic MRI yesterday, and it says Moderate-large distal colorectal stool is suggested. How can that be? I've been going almost daily since starting to take Miralax, and I don't feel constipated? I have made an appointment with the gastro, but it's not until February 26th. I need to get whatever this is out of there. I made a call to the nurse in the office asking what I should do. Something's not right. I can place this post elsewhere if you all can point me in the right direction.

BevJen · January 2021

KBL,

When all else fails, go to good old wikipedia. There is a whole writeup there about impacted fecal matter. I just glanced over it, but it sounds like you could still be "going" even with such a thing in place. Maybe it would give you some ideas? There's also a whole bunch of references at the end that I didn't check -- the bottom line from what I looked at is that they have different ways to get it out of there. Good luck with this. Like you need something else on top of BC!!!

KatyK · January 2021

Besia, wow can I relate to your swollen abdomen, I went through this in the fall and suffered for months. My abdomen was so swollen, it would go up and down and tight as a drum. I told my oncologist several times and she would feel my abdomen and check CT and say she felt nothing, so nothing was done and I was in misery! Long story but I ended up in the hospital over night and they gave me a diuretic- wow, what a relief! Unreal and it was just what I needed, not sure why oncologist missed the fluid and I had also talked to the palliative care doctor during a video appointment and he did not mention fluid either. I told him later and I really thought they missed a doctor 101 issue and that I suffered needlessly for months and he agreed. For me incredible relief, my breathing improved so much, the distended abdomen improved, I could bend over and put on my own socks! Not sure this is your issue but it’s and an easy try. Good luck, I really relate and wishing you relief!

besia · January 2021

Thanks all for your thoughtful comments---they have given me some new avenues to consider. I'm 60, so pregnancy is not the issue---but that's exactly how I feel, especially the associated low back pain. I've tried diuretic, but maybe I should give it another shot, and the FES-PET scan may be just the thing. Even if it doesn't diagnose this issue it's probably good to check my progression (or better still the lack thereof!)

It's great to at least have new things to investigate---so much better than just accepting it!

KatyK · January 2021

Besia- I’m 62 so no pregnancy for me, but I would tell the doctor I felt like I was 7 months pregnant! So in the hospital in November I was given thru IV 40 mg lasix, one night in hospital. When I came home I did two days of lasix in pill form, two 20 mg pills. That did the trick for me and since then I have taken one pill a couple of times. Not sure this is what you need of course but it was so easy and helpful for me I want it to work for you too! Keep us posted, I would love to know what works for you. Thinking of you and take care.

ShetlandPony · January 2021

I wonder if the radiologists have missed something. Here is a thread about interpreting scans for ILC patients. I would be tempted to contact Dr. Ulaner via email to see if he would review your scans and make recommendations for any other scans.

https://community.breastcancer.org/forum/71/topics/877710?page=1#post_5594281

Swollen, bloated Abdomen

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