I wonder the same. Have had digestive and bowel weirdness now for the past few years (dx in 2020). They keep sending me to a gastroenterologist who does a lot of scopes but never finds anything. But I wonder if these doctors even know what to look for. Lobular mets must look very different from other cancers. I just don’t know how to be sure I’m being properly monitored especially since PET scans, MRIs, mammograms and CT scans all can miss lobular cancers. So frustrating.
Me too! Lots of digestion issues for years. Lobular found last year. Oncologist suspects I’ve had it for a long time. Endoscopes show some inflammation but nothing else.
This is the 1st time I've heard about the different symptoms to look out for with metastatic lobular cancer. How do I know if the constipation and bladder issues I've been having since taking letrozole are just a side effect of the drug and not a metastatic symptom? I've been switched to exemestane with estiol cream to see if this reduces my side effects, but am starting to have the same bowel & bladder issues as I had on letrozole.
Thank you so much for this informative video. I think it will be helpful for my family to watch. I am an oncology nurse practitioner diagnosed with an 8 cm pleomorphic lobular breast cancer in 2022. I had bilateral mastectomy followed by chemo and radiation, now on anastrazole and abemaciclib. I was heartbroken when I saw the path said pleomorphic 😢 Genetic testing found a germline CHEK2 mutation. I hope there continue to be trials specifically for lobular and that we find out more info about pleomorphic lobular as well.
Turn to Jesus He loves you, He is the healer of the body And savior of the soul, There is True Hope in Jesus, God protects Psalms 91, He is the God of miracles Acts 2:21 And everyone who calls on the name of the Lord will be saved Jesus alone saves Trust Him with your salvation John 3:16 1 Corinthians 15 1-4 Moreover Brethren, i declare unto you the gospel which i preached unto you, which also ye have received, and with wherein ye stand By which also ye are saved, if you keep in memory what i preached unto you, unless ye have believed in vain, For i delivered unto you first of all that which i also received, how that Christ died for our sins according to the scriptures And that He was buried, and that He rose again the third day according to the scriptures, Take care
I was diagnosed with pleomorphic TN lobular cancer, Stage 1, no spread to lymph nodes or removed skin, and I chose a bilateral mastectomy despite only one breast with cancer, confirmed by pathology. Surgery just over a month ago. My oncologist says chemo is only treatment possible and I am wondering whether to do it? My Androgen Receptor test came back positive, though I know that isn't definitively an argument against chemo working. Waiting on the findings of a ctDNA blood test. Anyone with any experience similar? Thank you!
I am so sorry. I will keep you in my prayers . Dr. Riorden is great. There is also a lobular breast cancer UA-cam channel by the Lobular Breast Cancer Alliance out of Cleveland Clinic. It’s pretty informative. I was diagnosed in August of 22. ILC Pleomorphic, grade 3, ER+,PR+, HER2-, 2.4cm. I had a lumpectomy and radiation. Mine was found by a screening mammo- an architectural distortion was found. That started my journey. The more I read, the more I wish I had a double masectomy. I have PMS2 and a TSC2 variants of unknown significance. I wish you the very best in your journey. Sending prayers, hugs, and positive energy as well as prayers.
@@enidbraun980. Mine was ILC , stage 1B , pleomorphic, grade 3, 2.4 cm , ER and PR positive HER2 negative, Ki-67 at 70%, Oncotype was low -I think 15, October of 22 had lumpectomy (lymph nodes were all negative.) and 16 sessions radiation, overall- fear of reoccurrence, some breast pain intermittent, and armpit pain ( I think because one node was in my chest wall and muscle was cut/disturbed. Best to you sending Prayers, hugs, positive energy, wishing you the best.
Thank you Dr Liz. I was diagnosed with ILC of the pleomorphic variety 2 years ago. I had a unilateral mastectomy, underwent chemo & Radiation. I’m currently on a targeted therapy for a total of 24 rounds along with Anastrazole. Metastatic disease is a daily or frequent worry. Thank you for this content. I will continue to watch & learn.
Thank you, awesome video. I had a breast reduction and pathology showed low grade DCIS in 2 areas in rt breast. I opted for a bil mastectomy and a 4mm ILC was found in the left breast, Grade 1, Stage 1, nodes negative, lymphovascular fluids clear. My mammogram was Clear prior to reduction. I was 63. This was 5/24/23.. I tried letrozole and it was horrible. I am not sure what to do, my med onc is not knowledgeable. I already have osteopenia. Trying to take natural AI’s supplements that MD Anderson Cancer Center has done studies on. My estrogen and testosterone levels are basically non-existent as of now. I am very thin and active. No hereditary factor, awaiting testing for that.I am in Florida. Retired RN.
I also had atypical lobular hyperplasia throughout both breast according to pathology from breast reduction tissue that was removed, that is why I chose a dbl mastectomy. I had 3 kids young and nursed them and lived a healthy lifestyle. This has thrown me for a loop. Have 2 daughters in their 30s.
Letrozole made my life miserable. The surgery and the radiotherapy were a doddle compared to taking Letrozole. I am trying another A.I. at the moment. I'm 57, and I'm not overweight, don't drink, never smoked, and breastfed both of my children yet ended up with Lobular Cancer. I hope everything goes well for you.
@@shamudogsmith1751 Have you tried anastrozole? I tell you, I just do not know what to do. I already have decreased quality of life due to pelvic mesh disaster that was used to lift my bladder. It has all been removed but my pelvis is forever damaged. Have horrible deep muscle spasms and scarring. The thought of my taking a medication that will further make me miserable is really too much to bear. I hope everything goes well with you too. I wish there was a diff approach to help prevent recurrence than meds that have such dangerous SE and QOL issues. All for a 4mm group of cells found incidentally in my left breast. The med onc never mentions the DCIS.
Can't help but mention it as there are lots of stage 4 people doing keto/press pulse and carnivore, some fasting stuff, look up dr thomas seyfried, could help you
I got so anxious watching this Invasive lobular carcinoma 2 tumors both 2and a half centimeters and also in my lymph nodes. I had a clear mammogram the year before I got diagnosed.
Thank you for another excellent, informative video. I too was diagnosed with lobular cancer after seeing a strange indentation on my left breast. I am so pleased it was caught early & that I had an SMX, as it ended up being 3 multifocal cancers, with the largest being 0.9cm, and no lymph nodes involved. Here's hoping the liquid diagnosis comes through soon 👏🤗
Did you have any other symptoms? I have weird symptoms and neg mammogram and u.s but lymph node reactive..docs so far fobbed me off but I'm worried, saw B spec and she also fobbed me off said "you have hormonal blip" and to take primrose oil, I have 3 things in my hx that I feel have increased my risk but docs so far not listening
Super video. It would be helpful to know if there's anywhere we can sign up for future trials/research. I know you can see it on Breast Cancer Now but does anyone know of anywhere else we should be looking?
NATERA is a research group I’m part of that checks to see if the cancer has metastasized. It’s free here in the States. I’d pay for it even if it wasn’t free. Hope this helps.
Very informative, thankyou! I am now stage 4 after only a 14 month hiatus from cancer…what about those of us with not just lobular but as well triple negative, where hormonal therapy doesn’t work?
I have Her 2 metastic breast cancer. I took Ribociclib for 14 months and then I had a mastectomy on my right breast and lymph nodes. As soon as I recovered thy discoveted spits on my liver. I have been on chemo therapysince end of May.my final chemo session is tomorrow. I dont know if i am going to die soon. I dont get answers. I hated . Chrmo. I was im bed all summer. I need answers so I can plan ..i have pets I need to protect . I have no family. I asked if I would go back to hormone blockers amd they said no.can anyone answer?
I was diagnosed by MRI biopsy with grade 1, 3cm lobular cancer. There's also another 5cm "non mass enhancement" that I am scheduled to get biopsied soon. Do you recommend people with lobular cancer get a 2nd opinion? I'm just an hour and a half away from Dana Farber. It is foolish to not go to one of the best cancer centers in the world?
I was just diagnosed with a benign complex fiboadenoma. Should I have it removed? What are my chances of getting breast cancer with if the lump remains in my breast?
Thank you for this informative video! I was diagnosed in 2012 with lobular breast cancer and had a left mastectomy. I have had MBC now since 2019. My question is, do I still need to get a mammogram or breast MRI or ultrasound? I do get PET scans regularly. Do you think PET scans pick up lobular metastasis? Im on Ibrance and Anastrozole. Thank you so much.
Thank you for this video. I had no idea Lobular Cancer can act the same way (spreading in a thin plate) if it metastases. 2 years past diagnosis and we caught it before it hit the lymph nodes. Mine was also multifocal. DMX. But I always wonder if it will come back elsewhere.
Last video I saw was a couple of days ago. I thought Ms O'Riordan looked like she was suffering a grief reaction although we wouldn't know that for a while according to psychology thinking. I have only known two people in my life with this. Both didn't want help at that time so I write this unconnected to the video in question. I would say sorry. Perhaps that's why the Dr deleted the video because of not wanting to read a whole load of strangers like me saying sorry. I would say 'look after yourself'! The one thing grief sufferers don't want to hear. I live in Wales so I would say to anyone living anywhere like this check your Vitamin D and Magnesium Levels apart from others like eGFR. Surgeons I have met like Ms O'R don't like blood tests but here in Wales people who have had cancer get depressed with low levels of these and if corrected can feel a little better. Of course it doesn't bring back wife, father or any other lost loved one. I just think a grief stricken Welshman should be taking at least 4000Units vitamin D a day. It is difficult to get GP's to check Vitamin D (expensive) but here in Wales the results I have seen have always been low and grief seems to always be worse when it is. Ideally everyone with bad grief (in remission from cancer or not) should see GP whether surgeon or not! (I know what many readers are going to say: magnesium is an intracellular ion and difficult to test whole body levels. Perhaps it would be wise for GP to attempt to test this in a person who has had chemotherapy.) Even if Ms O'R cant take this genuine sympathy at the moment I hope her partner can.
Hi the mammogram did not show my cancer i had a ABUS that showed. Two surgeries later. So far I'm okay. I pray your doing well. Love all your educational utubes. Thank you
Breast cancer: Reference by the mathematician (it's me), who worked with Albert Einstein's only assistant and also with the probability and Venetian actuary Bruno De Finetti, the Kolmogorov-Smirnov statistics and their stochastic axiomatization in category theory relate the key figures of the patient's alleged breast disease to the question of whether to operate or not - otherwise it is medical malpractice.
Thanks! I’m now a healthy 77 diagnosed two years ago with 8 mm lump (!) of lobular and nothing in sentinel. Had a lumpectomy & radiotherapy, no problems with letrozole and so far so good. But thanks to you I’m more informed than my doctors on ILC and will be extra vigilant. You may just have saved my life.
I keep getting itchy hard moles on my breast. I get regular mammograms and they always come back normal. Not sure why these moles keep coming. It looks more like bruises than regular moles. Anyone else experience this?
I was diagnosed in 2015 with stage 3 er positive lobular cancer. Diagnosed late 2022 with metastatic disease in shoulder but receptors changed to her2 positive had a shoulder replacement but had abraxane chemo as mets in pelvis too. Have been on both letrozole and phesgo since with slight progression but a recent pet and biopsy now shows I'm Her2 low. Cancer is ever changing in my case!
Thank you for this clear informative video as no one in my oncology team? has given me any information as the the why I am being given this treatment currently on Letrozole and about to start Verzenios at 50 mg as both 150 and 100 have sent my liver function to abnormal heights.
I wonder the same. Have had digestive and bowel weirdness now for the past few years (dx in 2020). They keep sending me to a gastroenterologist who does a lot of scopes but never finds anything. But I wonder if these doctors even know what to look for. Lobular mets must look very different from other cancers. I just don’t know how to be sure I’m being properly monitored especially since PET scans, MRIs, mammograms and CT scans all can miss lobular cancers. So frustrating.
Me too! Lots of digestion issues for years. Lobular found last year. Oncologist suspects I’ve had it for a long time. Endoscopes show some inflammation but nothing else.
Thank You for this great information. I have invasive ductal stage 2. 100% estrogen
This is the 1st time I've heard about the different symptoms to look out for with metastatic lobular cancer. How do I know if the constipation and bladder issues I've been having since taking letrozole are just a side effect of the drug and not a metastatic symptom? I've been switched to exemestane with estiol cream to see if this reduces my side effects, but am starting to have the same bowel & bladder issues as I had on letrozole.
May I ask what type of symptoms this letrozole causes?
Thank you so much, Dr. O’Riodan! Your videos on ILC are so good. Great info. Easy to follow. Thank you so much ❤
Thank you so much for this informative video. I think it will be helpful for my family to watch. I am an oncology nurse practitioner diagnosed with an 8 cm pleomorphic lobular breast cancer in 2022. I had bilateral mastectomy followed by chemo and radiation, now on anastrazole and abemaciclib. I was heartbroken when I saw the path said pleomorphic 😢 Genetic testing found a germline CHEK2 mutation. I hope there continue to be trials specifically for lobular and that we find out more info about pleomorphic lobular as well.
Turn to Jesus He loves you, He is the healer of the body And savior of the soul, There is True Hope in Jesus, God protects Psalms 91, He is the God of miracles Acts 2:21 And everyone who calls on the name of the Lord will be saved Jesus alone saves Trust Him with your salvation John 3:16
1 Corinthians 15 1-4
Moreover Brethren, i declare unto you the gospel which i preached unto you, which also ye have received, and with wherein ye stand
By which also ye are saved, if you keep in memory what i preached unto you, unless ye have believed in vain,
For i delivered unto you first of all that which i also received, how that Christ died for our sins according to the scriptures
And that He was buried, and that He rose again the third day according to the scriptures, Take care
I was diagnosed with pleomorphic TN lobular cancer, Stage 1, no spread to lymph nodes or removed skin, and I chose a bilateral mastectomy despite only one breast with cancer, confirmed by pathology. Surgery just over a month ago. My oncologist says chemo is only treatment possible and I am wondering whether to do it? My Androgen Receptor test came back positive, though I know that isn't definitively an argument against chemo working. Waiting on the findings of a ctDNA blood test. Anyone with any experience similar? Thank you!
I am so sorry. I will keep you in my prayers . Dr. Riorden is great. There is also a lobular breast cancer UA-cam channel by the Lobular Breast Cancer Alliance out of Cleveland Clinic. It’s pretty informative. I was diagnosed in August of 22. ILC Pleomorphic, grade 3, ER+,PR+, HER2-, 2.4cm. I had a lumpectomy and radiation. Mine was found by a screening mammo- an architectural distortion was found. That started my journey. The more I read, the more I wish I had a double masectomy. I have PMS2 and a TSC2 variants of unknown significance. I wish you the very best in your journey. Sending prayers, hugs, and positive energy as well as prayers.
@@enidbraun980. Mine was ILC , stage 1B , pleomorphic, grade 3, 2.4 cm , ER and PR positive HER2 negative, Ki-67 at 70%, Oncotype was low -I think 15, October of 22 had lumpectomy (lymph nodes were all negative.) and 16 sessions radiation, overall- fear of reoccurrence, some breast pain intermittent, and armpit pain ( I think because one node was in my chest wall and muscle was cut/disturbed. Best to you sending Prayers, hugs, positive energy, wishing you the best.
Thank you Dr Liz. I was diagnosed with ILC of the pleomorphic variety 2 years ago. I had a unilateral mastectomy, underwent chemo & Radiation. I’m currently on a targeted therapy for a total of 24 rounds along with Anastrazole. Metastatic disease is a daily or frequent worry. Thank you for this content. I will continue to watch & learn.
Informative video, thanks.
Thank you, awesome video. I had a breast reduction and pathology showed low grade DCIS in 2 areas in rt breast. I opted for a bil mastectomy and a 4mm ILC was found in the left breast, Grade 1, Stage 1, nodes negative, lymphovascular fluids clear. My mammogram was Clear prior to reduction. I was 63. This was 5/24/23.. I tried letrozole and it was horrible. I am not sure what to do, my med onc is not knowledgeable. I already have osteopenia. Trying to take natural AI’s supplements that MD Anderson Cancer Center has done studies on. My estrogen and testosterone levels are basically non-existent as of now. I am very thin and active. No hereditary factor, awaiting testing for that.I am in Florida. Retired RN.
I also had atypical lobular hyperplasia throughout both breast according to pathology from breast reduction tissue that was removed, that is why I chose a dbl mastectomy. I had 3 kids young and nursed them and lived a healthy lifestyle. This has thrown me for a loop. Have 2 daughters in their 30s.
Letrozole made my life miserable. The surgery and the radiotherapy were a doddle compared to taking Letrozole. I am trying another A.I. at the moment. I'm 57, and I'm not overweight, don't drink, never smoked, and breastfed both of my children yet ended up with Lobular Cancer. I hope everything goes well for you.
@@shamudogsmith1751 Have you tried anastrozole? I tell you, I just do not know what to do. I already have decreased quality of life due to pelvic mesh disaster that was used to lift my bladder. It has all been removed but my pelvis is forever damaged. Have horrible deep muscle spasms and scarring. The thought of my taking a medication that will further make me miserable is really too much to bear. I hope everything goes well with you too. I wish there was a diff approach to help prevent recurrence than meds that have such dangerous SE and QOL issues. All for a 4mm group of cells found incidentally in my left breast. The med onc never mentions the DCIS.
would you mind letting me know what natural AI supplements are you taking? I have atypical lobular hyperplasia in one breast.
Can't help but mention it as there are lots of stage 4 people doing keto/press pulse and carnivore, some fasting stuff, look up dr thomas seyfried, could help you
Thank you. I appreciate your clear, calm, communication. I was diagnosed last year with ILC. Appreciate all this information!
Glad it was helpful!
I got so anxious watching this Invasive lobular carcinoma 2 tumors both 2and a half centimeters and also in my lymph nodes. I had a clear mammogram the year before I got diagnosed.
Thank you. Can’t switch from tamoxifen to letrozole just yet until menopause reached but cdk coming soon
Thank you for another excellent, informative video. I too was diagnosed with lobular cancer after seeing a strange indentation on my left breast. I am so pleased it was caught early & that I had an SMX, as it ended up being 3 multifocal cancers, with the largest being 0.9cm, and no lymph nodes involved. Here's hoping the liquid diagnosis comes through soon 👏🤗
Did you have any other symptoms? I have weird symptoms and neg mammogram and u.s but lymph node reactive..docs so far fobbed me off but I'm worried, saw B spec and she also fobbed me off said "you have hormonal blip" and to take primrose oil, I have 3 things in my hx that I feel have increased my risk but docs so far not listening
Thank you for sharing this excellent video and opening up about your personal experience.
❤thank you so much for this great video!
You are so welcome!
Are there foods you should avoid while on aromathase inhibitors?
Super video. It would be helpful to know if there's anywhere we can sign up for future trials/research. I know you can see it on Breast Cancer Now but does anyone know of anywhere else we should be looking?
NATERA is a research group I’m part of that checks to see if the cancer has metastasized. It’s free here in the States. I’d pay for it even if it wasn’t free. Hope this helps.
Very informative, thankyou! I am now stage 4 after only a 14 month hiatus from cancer…what about those of us with not just lobular but as well triple negative, where hormonal therapy doesn’t work?
See my reply above; I am so sorry about your recurrence! Did you have mastectomy, chemo? It is so confusing since our options are so limited.
I have Her 2 metastic breast cancer. I took Ribociclib for 14 months and then I had a mastectomy on my right breast and lymph nodes. As soon as I recovered thy discoveted spits on my liver. I have been on chemo therapysince end of May.my final chemo session is tomorrow. I dont know if i am going to die soon. I dont get answers. I hated . Chrmo. I was im bed all summer. I need answers so I can plan ..i have pets I need to protect . I have no family. I asked if I would go back to hormone blockers amd they said no.can anyone answer?
PS I am in Italy
This video was amazing. Thank you so much Dr Liz.
You're so welcome!
I was diagnosed by MRI biopsy with grade 1, 3cm lobular cancer. There's also another 5cm "non mass enhancement" that I am scheduled to get biopsied soon. Do you recommend people with lobular cancer get a 2nd opinion? I'm just an hour and a half away from Dana Farber. It is foolish to not go to one of the best cancer centers in the world?
I was just diagnosed with a benign complex fiboadenoma. Should I have it removed? What are my chances of getting breast cancer with if the lump remains in my breast?
Another fantastic video
Thank you for this informative video! I was diagnosed in 2012 with lobular breast cancer and had a left mastectomy. I have had MBC now since 2019. My question is, do I still need to get a mammogram or breast MRI or ultrasound? I do get PET scans regularly. Do you think PET scans pick up lobular metastasis? Im on Ibrance and Anastrozole. Thank you so much.
Thanks!
Thank you for this video. I had no idea Lobular Cancer can act the same way (spreading in a thin plate) if it metastases. 2 years past diagnosis and we caught it before it hit the lymph nodes. Mine was also multifocal. DMX. But I always wonder if it will come back elsewhere.
Last video I saw was a couple of days ago. I thought Ms O'Riordan looked like she was suffering a grief reaction although we wouldn't know that for a while according to psychology thinking. I have only known two people in my life with this. Both didn't want help at that time so I write this unconnected to the video in question. I would say sorry. Perhaps that's why the Dr deleted the video because of not wanting to read a whole load of strangers like me saying sorry. I would say 'look after yourself'! The one thing grief sufferers don't want to hear. I live in Wales so I would say to anyone living anywhere like this check your Vitamin D and Magnesium Levels apart from others like eGFR. Surgeons I have met like Ms O'R don't like blood tests but here in Wales people who have had cancer get depressed with low levels of these and if corrected can feel a little better. Of course it doesn't bring back wife, father or any other lost loved one. I just think a grief stricken Welshman should be taking at least 4000Units vitamin D a day. It is difficult to get GP's to check Vitamin D (expensive) but here in Wales the results I have seen have always been low and grief seems to always be worse when it is. Ideally everyone with bad grief (in remission from cancer or not) should see GP whether surgeon or not! (I know what many readers are going to say: magnesium is an intracellular ion and difficult to test whole body levels. Perhaps it would be wise for GP to attempt to test this in a person who has had chemotherapy.) Even if Ms O'R cant take this genuine sympathy at the moment I hope her partner can.
Hi the mammogram did not show my cancer i had a ABUS that showed. Two surgeries later. So far I'm okay. I pray your doing well. Love all your educational utubes. Thank you
Off topic, but gosh! I LOVE YOUR GLASSES ❤ where can I get a pair?!
Breast cancer: Reference by the mathematician (it's me), who worked with Albert Einstein's only assistant and also with the probability and Venetian actuary Bruno De Finetti, the Kolmogorov-Smirnov statistics and their stochastic axiomatization in category theory relate the key figures of the patient's alleged breast disease to the question of whether to operate or not - otherwise it is medical malpractice.
Thanks! I’m now a healthy 77 diagnosed two years ago with 8 mm lump (!) of lobular and nothing in sentinel. Had a lumpectomy & radiotherapy, no problems with letrozole and so far so good. But thanks to you I’m more informed than my doctors on ILC and will be extra vigilant. You may just have saved my life.
I keep getting itchy hard moles on my breast. I get regular mammograms and they always come back normal. Not sure why these moles keep coming. It looks more like bruises than regular moles. Anyone else experience this?
Thank you for your content
You mentioned Adjuvant! Online… however it’s been quite a while since this tool doesn’t seem to be accessible anymore ?
I was diagnosed in 2015 with stage 3 er positive lobular cancer. Diagnosed late 2022 with metastatic disease in shoulder but receptors changed to her2 positive had a shoulder replacement but had abraxane chemo as mets in pelvis too. Have been on both letrozole and phesgo since with slight progression but a recent pet and biopsy now shows I'm Her2 low. Cancer is ever changing in my case!
Thank you for this clear informative video as no one in my oncology team? has given me any information as the the why I am being given this treatment currently on Letrozole and about to start Verzenios at 50 mg as both 150 and 100 have sent my liver function to abnormal heights.
Thank you for your content, very infomative.
What is the skin look different lobular type?
I have invasive lobular breast cancer grade 2 and I just got the news yesterday 😞 thank you for sharing this information
I'm sorry to hear that. That's the diagnosis I got too back in Dec. It's hard going
❤❤thanks for your sharing
Thank u Dr Liz.
👍