Gastric cancer

[BlessedMimi]

I have had MBC since September 2019, being in remission for several months. In May I found out that the cancer is in my duodenum and stomach lining plus my skull. The cancer is inoperable because of where it is. Had to have feeding tube put in which is not pleasant! Have lost 34 pounds! Have begun getting Taxol. I am depressed but trying to stay positive!! It is rare for my breast cancer to have spread to these areas! Anyone experienced anything like this?

[MJ_Michigan38]

I’m so sorry! I hope Taxol helps. Do you have anyone you can talk to when you’re feeling depressed? Especially someone who doesn’t insist you stay positive when you really just need to cry?

I personally haven’t had it spread there, but I think it’s a more common area for lobular breast cancer to spread. Honestly, breast cancer can spread anywhere (a friend of mine has it in the wall of her heart), but it’s always a shock, isn’t it? I will send lots of hope that Taxol makes the cancer retreat, and then maybe you can get on something with fewer side effects. ❤️

[CatLady2022 in reply to MJ_Michigan38]

Breast cancer can spread anywhere and I have read here that lobular spreads to stomach lining. I am stage iv with extensive bones Mets Including my skull. There is no bone in my body not affected by cancer. They won’t even say a specific location other than skull and hips because I light up like a Christmas tree on cts and believe me I have asked for specificity.

I don’t know why my onc refuses to acknowledge that lobular spreads to stomach lining which makes me question her every move because I’ve read it here that it does in fact spread to stomach lining and also I googled it and confirmed it there. I don’t understand why she is hesitant to acknowledge the facts.

My onc gave me a poor prognosis in beginning 3-5 years and it wasn’t until I found this place with all these lovely survivors that I realized there were many who have been living long lives with this disease. Try not to get too discouraged (easier said than done I know) but we have to keep fighting. There are so many new therapies out there for us. When one stops working, we move on to the next. Hopefully they find a cure in our lifetime. 🤗

[BlessedMimi in reply to CatLady2022]

Thank you for your reply! My cancer is lobular.

[Nocillo in reply to CatLady2022]

It does indeed spread to the stomach lining. Your oncologist is very poorly informed.

[CatLady2022 in reply to Nocillo]

I agree 💯!

[13plus in reply to CatLady2022]

So can you change oncologist then? I know I wouldn’t be staying with someone who chooses to not acknowledge known facts!

[CatLady2022 in reply to 13plus]

I live in a small town. Oncology is an hour away. I was told by family member who is a doctor (not oncologist) that treatment for me would be the same 4 hours away at big cancer center (MD Anderson) as long as I remain first line. I have considered going there anyway because of her belief but I think I will ask her to explain to me why my case is considered different even tho lobular is known to show up in stomach lining and not seen on regular cts when it does. Maybe there is something in my documentation I’m not seeing, like maybe my cancer is not 100% lobular. Medical terminology (even tho I was a med Trans for over 20 years and well versed in medical terminology) is not always straightforward and maybe she knows something I don’t know or sees something I don’t see, I guess I may have to travel 4 hours away to find someone who will listen. This oncologist was not my first choice. Her aunt (my fave oncologist) retired and after I went through two other oncologist I didn’t get along with (I am known to question everything and that doesn’t sit well with MDs), I am running low on choices here. 😂

[Bettybuckets in reply to CatLady2022]

I would sit tight while you do well on first line… and then travel to MDA for 2nd opinion when if you progress…. Thst is going to be the easiest way to handle things for now.

[13plus in reply to CatLady2022]

I suspected you might have limited options. So you could do what Betty suggests and wait till/if you need another opinion. It might also be interesting to enquire how far ahead you would need to book for a a second opinion at MD A. I say that because one thing for sure - if something does come up you want to know you can get in fast to see them. Or go see them now so you’ve got an established relationship already. I did that at Upenn (2 hr drive ) . The doc was so nice she said any time I had a question just reach out, which I have done through their excellent portal at least once while I stayed with my regular oncologist. So it was useful and reassuring to know I had 2 minds at my calling

[Bettybuckets in reply to 13plus]

Solid advice! Really good to have that relationship when you need it!

[Nocillo]

I have lobular and ductal. Diagnosed in 2015 with Mets to all bones. Was on Anastrozole and Faslodex for 6 years and started feeling weird and lost 17 lbs. without trying in the fall. In January 2021 I started vomiting every thing I ate. Continued losing about a pound a day and had no energy, not even to take a shower. After weeks of calling my oncologist and family doctor, two ER visits, my family doctor finally agreed to a stomach endoscopy thinking I had an ulcer. My stomach lining was covered with cancer. I was so upset with my oncologist who should have known lobular favors the digestive tract!😡 I started on Ibrance and Tamoxifen and have been fine for over 2 years now. I had to have 2 blood transfusions after all that because I had lost so much blood in my stool while they were doing nothing! I lost 45 lbs. total. Unfortunately I have gained all the weight back, oh well. So tell your oncologist that YES, lobular goes to the stomach lining!!! I had been watching my tumor markers rise in the 6 months previous and I felt like something was going on, but my oncologist said it didn’t mean anything. Trust your gut! I have a new oncologist now! I eat everything now. I hope you get the proper help you need!

[jersey-jazz in reply to Nocillo]

Dear God! The shit that we MBCers have to go through is mind boggling. No wonder we are such strong survivors.

[KMBL_]

I have it in my stomach as well. It was in three places, but right now it’s in one that they see. I lost 17 pounds and was having a really hard time eating. I’ve gained all my weight back. It will be five years this October when the symptoms started. I was on Ibrance and Letrozole for two years, then Xeloda and Faslodex for 18 months until I changed docs. They didn’t want me on that combination, as it’s not protocol. I’ve been on Faslodex alone since January of this year. I’m still able to eat. I also have it in all bone and bone marrow from skull to femurs.

[13plus in reply to KMBL_]

You’ve had a great outcome on the drugs!

[mariootsi]

Praying that taxol is successful.

[DDIL1]

I have a colon lesion and I’m also lobular! Like everyone on this thread .. lobular does like stomach and I would say maybe the colon given my circumstance. Always push your onc for tests if you feel something is just not right! I hope you get on the right med for you.. I will also add genomic testing like Guardant360 can help guide treatment decisions.

[PJBinMI]

I'm a long timer with metastatic lobular bc (19 years as of 3/1) and had only bone mets until 3 or 4 years ago when cancer cells were found in tissue blocking my left ureter. Then last Oct I was in the hospital for 23 days (YUCK1!) due to an intestinal blockage due to cancer cells impinging on the intestine and the valve between the stomach and small intestine. I had surgery to remove that section of my digestive system. I, too, lost alot of weight but now have stabilized at a much better weight. I've had to eat less than I did before all this and have been told to get alot of fiber. this digestive stuff is the hardest I've had! Sad but true. I am using a walker, probably due to being bed bound during most of that hospitalization and losing alot of muscle tone. I hope you do better than right now. This lousy cancer is sure not for the unresilient!

[13plus in reply to PJBinMI]

I know you can rebuild your strength over time, and if you were not on that walker before you were in hospital, you can get there again! Are you getting any PT? Can you get some? I teach fitness and was off my feet for 8 weeks due to a foot fracture. It’s been a very slow progress to walk properly and rebuild my overall strength and balance since it is still healing (I broke it on Dec 26!) . It doesn’t have to be a lot but it does take dedicated daily targeted exercises of something beyond daily living activities

[NPmary]

I have mets to the skull - l dont think that one is so rare. I a. So sad and sorry you are going thru this. Wishing and praying that you have moments of feeling blessed (like your name), that you have strength for making decisions, comfort, peace and that always you know you are lovdd and held in love. Mary 🌺

[Timtam56]

Not me. No. But you know what? I send you huge big gentle hugs. I don’t know what this must feel like for you. and I”m sure its a fear for all of us that the spread will happen and that we will have to deal with these kind of things.

I am so sorry that you are going through this.

Get any pleasures you can from where ever you can and don’t feel guilty for enjoying anything. That’s my motto.

[Bettybuckets in reply to Timtam56]

I like your motto

[13plus]

Sorry to hear you’ve got this new progression. But wishing you the best with the taxol! There are some who’ve had good results with it so believe you will be one of them! Hugs

[Andersl]

Has your consultant considered stereotactic radiotherapy to your skull? It has to be small to have this treatment but it's very effective. I have oesophageal varices, most likely due to liver disease, separate to the cancer. I'm waiting for investigations but I can empathise with you.

The Taxol should knock out the liver and duodenum cancer (mets?)

Stay calm. Focus on getting through the Taxol. And ask about stereotactic or partial brain radiotherapy (avoiding cognitive function and memory cells)

Best wishes

Louise x

[ba5083]

Unfortunately my Onc is the same way - Doesn't believe ILC can metastasize to the IG tract. Needless to say I am switching Onc. I told him about what I found on MD Anderson's site and he still would have non of it. I would like to post the article from 2022 MD Anderson's site but it is a pay study to download. You can find the study from the 1st link in the 2nd Paragraph and read it for free. mdanderson.org/cancerwise/W...

Here is an exhibit from that research article

Metastatic patterns of ILC and their frequency in imaging and at autopsy

[ba5083]

The peritoneum serves to support the organs of the abdomen and acts as a conduit for the passage of nerves, blood vessels, and lymphatics. Although the peritoneum is thin, it is made of 2 layers with a potential space between them.

[Ticket123]

I also have lobular and it is most definitely in my stomach lining.