Progression to colon

[DDIL1]

I have lobular which just progressed to colon. My mind is everywhere right now. I don’t know what to think and I can’t seem to find many with colon Mets. I have frequent urination and lower abdomen bloating small frequent bowel movements (TMI) . It’s like is this a UTI , IBS from stress or cancer? How do we manage this? Can it be contained for a long while? I guess I’m in a dark place, trying to be positive but it’s hard. Is there lobular ppl dealing with this too? I’d love to hear your story and any glimmer of hope.

[ba5083]

I am so sorry to hear this. My heart is sad. 🙏 I have/had a very similar Ki-67 that you posted a while back which was interpreted to me as slow growing. If my memory serves correct you were having some issues around your kidney but seemed to be cleared with a scan. How did you get colon confirmation? I haven't heard anything regarding spread to colon with lobular. Stomach area yes but not colon. Is it possible this could be a different type?

[DDIL1 in reply to ba5083]

yes, I had flank pain. I pushed for an EGD and Colonscopy. It is in fact lobular breast in colon. It’s called a carpet lesion .

[ba5083]

I was able to find this in a PubMed report - A lot of science to digest

In a study of 2605 cases of breast cancer with metastases; 359 lobular and 2246 with ductal carcinoma, 4.5% in ILC metastasized to the gastrointestinal tract compared with 0.2% in the ductal carcinoma group. 6 Gastrointestinal tract involvement with metastatic ILC is thought to most commonly involve stomach and small bowel, then followed by colon and rectum. 4 According to available literature, 60% metastasizes to the stomach, 12% to the esophagus, 11% to the colon, 8% to the small intestine, and 7% to the rectum. 3 The reason for this mechanism of spread is unclear, however, some possible reasons may include the histopathology of ILC. ILC is characterized by small cells that infiltrate the breast stroma in a single‐file “Indian‐file” pattern, which does not destroy anatomical structure nor result in a reactive connective tissue response (Figure 3), and can therefore fail to distinctly form a mass in the breast which can be difficult to identify early.

Other reasons for metastasis of lobular breast cancer may be explained by E‐cadherin which is crucial in the maintenance of epithelial cell polarization. E‐cadherin is a calcium‐dependent epithelial cell adhesion molecule when mutated or lost can be associated with metastases as it acts as an invasion suppressor. 9 Deficiency of this molecule is responsible for cancer metastasis due to loss of cell to cell adhesion, with increased cell motility causing spread in blood and lymphatics. 10 In lobular breast cancer, E‐cadherin loss has been observed in most cases but not observed in invasive ductal cancers. In some studies, E‐cadherin has been used to be reliably used as a marker to differentiate between IDC and ILC.

[DDIL1 in reply to ba5083]

thank you for the article

[bubblystream in reply to ba5083]

excellent information! Thank you.

[ba5083]

I have been looking most of the day and finally found a sheet I was looking for regarding the loss of E-Cadherin in Lobular. A couple things that could help avoid this loss is Curcumin (Turmeric), and Vitamin D3. I gathered this from some research I did a while back and suggest if you consider using both of these to research it yourself and talk to your Oncologist as I am not a medical professional. There are several other supplements that I have also researched but those two are the most common. Curious if you have had your Vitamin D checked recently?

[DDIL1 in reply to ba5083]

you’re so kind to look for me. Yes lobular has E-Cadherin loss. I take Vitamin D daily the level is ok. I also checked magnesium and B12. For fun. I have Turkey Tail Mushroom I will start taking as soon as I know my new drug. This is all so overwhelming . Praying they can clear this before it spreads further. Thank you so much

[mariootsi in reply to DDIL1]

I'm praying for you and sending love and hugs

[DDIL1 in reply to mariootsi]

Thank you Mariootsi I hope you’re doing well!!

[Hidden in reply to DDIL1]

I will pray for you DD and am Sending you warm thoughts. I am so sorry you have this bc spreading. I didn't answer earlier bc I had literally "the week from hell"- and I apologize. These diagnosis are so hard to pinpoint an exact cause. I have asked my Oncologist tons of times. They don't truly know. Everyone in my family now has had some kind of odd or fatal brush with very rare cancers. And the crazy thing is my family has always been uber healthy. I mean me and my sisters weren't allowed to ever eat cereal or sugar. Strict diets as children and everything even peanut butter bought from the health food store. I had to run a mile every night before dinner for Goodness Sakes! My parents were health nuts. Not even real maple syrup!

Anyway, my Sister and I were just now talking about pesticides and the local farmland ground water and such. Because where I live tons of people get Cancer.

All I am saying is I don't know why some of us get this and others do not. Believe me, at only 51 years. I am really upset to get stage 4 colon cancer and now fighting to stay alive.

I am here for you and sad for everyone here that is dealing with this.

This Website all the very kind sincere people have brought me a lot of Comfort, Prayers and H O P E. I am truly greatful to have found this place.

If I can say, what I do now is focus on the

Here and Now. No one is going to Tell Me when I will and will not live. Sounds crazy but Cancer may be pulling at me but I am a fighter. We all have to be.

The cause of my Cancer, is in the rearview and I have left it in the dust.

I am focused on living each and every day. Looking people in the eyes and saying thank you. I See you. You matter!

And if you can try hard to live as freely from Cancer's death grip as you can; I think that is best. I told my dog last night, as he is my first and foremost greatest confidante, I told him as I was leaning on my crutch and trying to breathe through insurmountable waves of stomach pain-- I would not wish this on my worst enemy.

And I mean that.

Cancer is a horrible terrible disease. Noone deserves it. No matter what they did. Cigarrettes. Alcohol. Drugs. None of which I ever use. Still, no one deserves Cancer.

Please know you are not alone in this big scary cancer place. You are special and you deserve to live!

Again, Sending you a Warm gentle Hug and I will say some prayers for you. May you know Comfort, Warmth and Abundant Love 💝💐🌺🙋 ~

[DDIL1 in reply to Hidden]

wow, well written! Thank you for the burst of hope. I have a carpet lesion in my colon about 1in. From what I read it has probably been there 5 years, so maybe not progression just found on colonoscopy. I’m praying for all of us. This cancer does suck and no one deserves this. It seems it’s becoming more prevalent or maybe I just didn’t know. Is it our food sources? But yet you werr healthy and a healthy eater. I hope world leaders put a huge focus on cancer. The moonshot program is just not robust enough. We spend billions on the Ukraine War and I understand that but if they can find money for that then put BILLIONS OF money towards cancer treatments and screenings and tests. This stole alot from of us. Time the most precious. Waking up and sleeping without this on our minds, the pain and discomfort which takes away the joy of doing things you love. All we can do is focus on the positive, pray, hope and accept. Thank you, Your words are warm and wise. We are in this together. Hugs back to you❤️❤️

[Hidden in reply to DDIL1]

Of course. I said some Prayers for you last night and I really hope you get to feeling better and get the treatment needed. Again, Best wishes to you 🙋🌷🌺 Hope you have a Lovely day ~

[Fiercefighter13]

I am lobular. ER/PR positive. My Metz were first detected in many bones, spine, hips, ribs and clavicle in July of 2019. They found spread in my stomach and colon in July of 2022 via endoscopy and colonoscopy at my request. None of my scans, MRI, PET or CT every three months for three years picked it up. Changed meds to Xeloda and it’s kicking the lobular Metz hard! Markers went from 586 to 68 in 16 weeks. None of the standard CDK or endocrine therapies worked well for me. Lobular running around in the gastro region and ovaries is pretty common. I understand how you are feeling. Things will get better when you find the right meds that work for you!! Wishing you well, take care.

[DDIL1 in reply to Fiercefighter13]

That’s an amazing response. I’m glad it working. Will you get scans again? If so how will they do it?

[Fiercefighter13 in reply to DDIL1]

I’m getting an FES PET in July and probably another endoscopy in September. Hopefully the FES PET picks up on the cancer. I’ve never had an FES scan before, so it should be interesting!

[DDIL1 in reply to Fiercefighter13]

I had one in December didn’t see it. I had MRI in April didn’t see it, Ct in April didn’t see it. Ugh lobular

[Fiercefighter13 in reply to DDIL1]

Agreed 100%

[love2golfwell]

I am so sorry to hear this and am sending you hugs and prayers that your doctor offers you a good solution for this issue. I know it is hard to be calm and positive when you hear news like this, but I hope you can find a way to push away dark thoughts and remain hopeful. Sending hugs.

[DDIL1 in reply to love2golfwell]

Thank you!

[seniorcitizen]

So sorry to hear this news! Hope to see you on Monday in our group! I have missed you but understand how life gets in the way.....

[DDIL1 in reply to seniorcitizen]

yes, I’ve been really busy between this and work. I’m hoping to get into this trial and it works . I’ve had so many tests that the hospital staff knows me and will start inviting me to team meetings there..LOL. I hope to be on Monday. I hope you’re doing well.

[seniorcitizen in reply to DDIL1]

You have an amazing ability to form relationships! Keep it up!

[PJBinMI]

I am 19 years into living with metastatic lobular bc. Fairly good quality of life but in October I had asn intestinal blockage and ended up in the hospital. Surgery found cancer cells in the abdomen blocking things right st the connection between my stomach and duodenum. The blockage was removed and there was much less cancer in my abdomen than was thought at first. Those cancer cells turned out to be triple negative, so I'm now on my first actual chemo, Xeloda, and it seems to be doing its job! I have rawness in my hands, though, abd dose was reduced and it was also changed from two weeks on-one week off to 1 week on-1 week off. I had two cycles on the higher dosage and have now have started week off of my second cycle of the lower dose. Each of us does have our own unique experience with MBC, but lobular does often get well controlled for a long time and some of us do really well for a long time. I hope you will do well for years!

[DDIL1 in reply to PJBinMI]

Thank you! I knew you had it a long time I remember reading your posts. I’m sorry it reared its ugly head again. Thank you for the hope. I’ll be 63 in September I love to make 70 or beyond . Glad to hear the xeloda is working! I will also keep you in my thoughts. Hugs to you as well!! We are all here for each other!