Pleomorphic Invasive Lobular Cancer
Comments
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I don't know anything about
I don't know anything about your particular cancer but wanted to welcome you to the board. This is a group of people who are informative, caring, supportive and just the best. We will be here with you and try to help you find the answers or support you are looking for.
Waiting is one of the worst parts of all of this. We all want to get on with the treatment and know what's up but it can be a slow process. Try to find things to occupy your mind and take it one step, one day at a time.
Prayers and good thoughts coming your way.
Stef0 -
I don't know anything about
I don't know anything about your particular breast cancer. I had invasive ductal breast cancer. I had a lumpectomy too and radiation treatments. What does your oncologist say? I hope he can answer your questions for you to make you feel more at ease.
Good luck and sending prayers,
Debby0 -
My second primary breastDebbyM said:I don't know anything about
I don't know anything about your particular breast cancer. I had invasive ductal breast cancer. I had a lumpectomy too and radiation treatments. What does your oncologist say? I hope he can answer your questions for you to make you feel more at ease.
Good luck and sending prayers,
Debby
My second primary breast cancer was this type. Lobular cancer is less common than ductal. but not rare or unusual. It is a cancer of the lobules in the breast. It is usually ER PR positive but not always. Pleomorphic looks most unlike a regular cell. unfortunately more aggressive than regular lobular. I think there are different features to this that your oncologist can explain. I was diagnosed in may of 2009, had chemotherapy, cytoxan, adriamycin, and taxol. I had a mastectomy and radiation. Lobular cancer does not grow the same as ductal and form a distinct lump right away, so it is harder to detect. not always seen on mammo(mine wasnt) and better seen on MRI.
If I can help in any way write or you can pm me. hugs I am sorry you are here but glad you found us.1 -
I had Invasive Lobular Carcinoma and DCIS in my right breast allcarkris said:My second primary breast
My second primary breast cancer was this type. Lobular cancer is less common than ductal. but not rare or unusual. It is a cancer of the lobules in the breast. It is usually ER PR positive but not always. Pleomorphic looks most unlike a regular cell. unfortunately more aggressive than regular lobular. I think there are different features to this that your oncologist can explain. I was diagnosed in may of 2009, had chemotherapy, cytoxan, adriamycin, and taxol. I had a mastectomy and radiation. Lobular cancer does not grow the same as ductal and form a distinct lump right away, so it is harder to detect. not always seen on mammo(mine wasnt) and better seen on MRI.
If I can help in any way write or you can pm me. hugs I am sorry you are here but glad you found us.
at the same time but I honestly don't know if it was Plemoric or whatever that word was.....
I had chemo first to shrink it down, it was 4.5 cm, shrunk it down to almost invisible and the surgeon had a hard time finding any left in me to cut out. But he did and I had a lumpectomy with clean margins on Sept 15th, 2010 and then I did 33 rads treatments. I'm now on Tamoxifen and doing great!!! I wish you well in your treatment.0 -
Do not read the info on the2Floridiansisters said:I had Invasive Lobular Carcinoma and DCIS in my right breast all
at the same time but I honestly don't know if it was Plemoric or whatever that word was.....
I had chemo first to shrink it down, it was 4.5 cm, shrunk it down to almost invisible and the surgeon had a hard time finding any left in me to cut out. But he did and I had a lumpectomy with clean margins on Sept 15th, 2010 and then I did 33 rads treatments. I'm now on Tamoxifen and doing great!!! I wish you well in your treatment.
Do not read the info on the net it is scary and not necessarily accurate. I looked under breast cancer.org and the news is more positive and hopeful.People get lobular less often than ductal, and pleomorphic is less common in lobular. It is more agggressive than classic lobular. It depends on the size, grade, and node status which treatment you will recieve. Many women who have had this are alive and well, and you can be too.0 -
I haven't heard
of PILC but I had Invasive Lobular Carcinoma in my right breast and LCIS in left breast. My tumor was 6.1 cm and I decided to have bilateral mastectomy June 2010. I'm the 5th on both sides of my family with bc. I'm the only one that had Lobular cancer. I'm 61 and have been having mammos every year since I was 35. In August I started chemo cocktail of Taxotere/Cytoxan 6 rounds that just ended in Dec 2010. Last week I had CT scan and mapping to start radiation the end of this week for the next 5 weeks. My tumor was next to the chest wall and pectoral muscle. I didn't have any lymph node involvement. My surgeon thought I would be able to avoid both chemo & rads but the oncs thought otherwise. Please keep posting and ask anything.
{{hugs}} Char0 -
Invasive Lobular Carcinoma
I was diagnosed with invasive lobular carcinoma on January 11 (last week) and am now booked in for a mastectomy on January 24. They aren't sure how far it has progressed as it is very hard to detect on mammogram. It was actually missed this time last year. Fingers crossed everything goes ok.0 -
Pleomorphic Invasive Lobular Cancer
Hi Sammy,
As I'm reading your post, I feel like I'm reading my life story. I too was just diagnosed with Invasive Lobular Cancer with Pleomorphic cells. My Oncologist keeps telling me that it is just a word . . . a descriptive word????? She doesn't want me to get hung up on the bad stuff. What I could figure out so far is that pleomorphic means that the cells are a variety of sizes and shapes. They tell me that this is common and that the real issue is in my case is that I'm 80% ER positive and 40% PR positive. They don't seem to care too much about the PR results, however what they have mentioned is that 20% of the Cancer Cells have found a way to survive without the ER.
Anyway, I'm trying to focus on the good stuff, because really it's better than not! I recently had the remaining part of my 9 cm tumor removed along with both breast with immediate Tram Flap reconstruction. The tumor was partially removed during previous biopsy. It took 4 biopsies (all core), I don't know how many mammograms and ultrasounds, 1 MRI and a PetCT Scan to diagnose it as just cancer. The mastectomy definitively diagnosed it as ILC with Pleomorphic cells, they also found LCIS in both breast. Diagnostic Test and mammograms kept coming back benign. I have had yearly Mammograms along with yearly Gyn visits. I also do self examination, but we all missed it until my breast changed shape with a lot of pain. Still it took a lot of invasive biopsies/surgeries and a lot of pain, before it was diagnosed as ILC.
The reconstruction had it's problems as well. I had healing issues with my left over mastectomy skin with partial necrosis. After everything heals, I'm scheduled for 8 rounds of Chemo and then 5.5 weeks of Radiation.
They keep telling me that my prognosis is good even though the tumor was very large. I'm a Stage III, T1, M0. Only 3 lymph nodes involved. The oncologist says that this is the good type of cancer to have . . . I still have a hard time believing that! They say it is usually slower growing than Ductal, but they treat Ductal and Lobular with the same Chemo drugs. I've also been told that it's probably been in my body for a very long time and it hasn't killed me so far . . . this is all starting to sound like a very sick top 10 list on David Letterman's Show.
The problem with this type of cancer is that only 10% or less patients get this type and therefore, as I see it, very little research funds are being spent on this type of cancer. After all as many Gyn's and other Drs. have told me, they are successfully catching 90% of Ductal Cancers with current mammography and other test available. It is just not fair, but we still have to remain positive and focus on hope!
Have you started chemo yet and if so, how is your experience so far?
New Pink Survivor0 -
plemoric invasive lobular cancerNew Pink Survivor said:Pleomorphic Invasive Lobular Cancer
Hi Sammy,
As I'm reading your post, I feel like I'm reading my life story. I too was just diagnosed with Invasive Lobular Cancer with Pleomorphic cells. My Oncologist keeps telling me that it is just a word . . . a descriptive word????? She doesn't want me to get hung up on the bad stuff. What I could figure out so far is that pleomorphic means that the cells are a variety of sizes and shapes. They tell me that this is common and that the real issue is in my case is that I'm 80% ER positive and 40% PR positive. They don't seem to care too much about the PR results, however what they have mentioned is that 20% of the Cancer Cells have found a way to survive without the ER.
Anyway, I'm trying to focus on the good stuff, because really it's better than not! I recently had the remaining part of my 9 cm tumor removed along with both breast with immediate Tram Flap reconstruction. The tumor was partially removed during previous biopsy. It took 4 biopsies (all core), I don't know how many mammograms and ultrasounds, 1 MRI and a PetCT Scan to diagnose it as just cancer. The mastectomy definitively diagnosed it as ILC with Pleomorphic cells, they also found LCIS in both breast. Diagnostic Test and mammograms kept coming back benign. I have had yearly Mammograms along with yearly Gyn visits. I also do self examination, but we all missed it until my breast changed shape with a lot of pain. Still it took a lot of invasive biopsies/surgeries and a lot of pain, before it was diagnosed as ILC.
The reconstruction had it's problems as well. I had healing issues with my left over mastectomy skin with partial necrosis. After everything heals, I'm scheduled for 8 rounds of Chemo and then 5.5 weeks of Radiation.
They keep telling me that my prognosis is good even though the tumor was very large. I'm a Stage III, T1, M0. Only 3 lymph nodes involved. The oncologist says that this is the good type of cancer to have . . . I still have a hard time believing that! They say it is usually slower growing than Ductal, but they treat Ductal and Lobular with the same Chemo drugs. I've also been told that it's probably been in my body for a very long time and it hasn't killed me so far . . . this is all starting to sound like a very sick top 10 list on David Letterman's Show.
The problem with this type of cancer is that only 10% or less patients get this type and therefore, as I see it, very little research funds are being spent on this type of cancer. After all as many Gyn's and other Drs. have told me, they are successfully catching 90% of Ductal Cancers with current mammography and other test available. It is just not fair, but we still have to remain positive and focus on hope!
Have you started chemo yet and if so, how is your experience so far?
New Pink Survivor
Hi New Pink survivor,
How are you doing today? I was diagnosed in Jul 2010. I had two different kinds of cancer. I had infiltrating ductal on the left and invasive plemoric lobular carcinoma on the right. They found mine on a mamo, then did more views and said that it wan't but it was. The left didn't show on a mamo. I had a lump on the right. and it grew and my breast changed shape. First I had excision and they found it was cancer. Then I had MRI and then a biopsy on the left .They found a different kind of cancer. Then we did a biopsy of the lymph nodes on the right. THEy didn't really know how to treat me.So we started with chemo for the left. I had a port placed. It was her2 pos. We did taxol and herceptin 12 weekly treatments. Those went really well.Some fatigue, mouth sore. I broke out with acne. THen they almost did the surg. But surgeon said the chemop was working and I could get an infection so sontinue. So we did Adrimycin and cytoxan. Didn't go as well. Alot of stomach upset fatigue. We did every two weeks. Not reallyu time to recover.But I think they didn't want to wait.Then I had bi-lateral mast. With lymph node disection. None on the left but one on the right. They felt it was encapsulated so no rads. I had expanders placed attime of surg. Wich was Jan.2011. And I just got my implants in June 2011. I haven't has any real major problems I am happy to say. No infection or lasting pain.I am still on herceptin until Nov. and I started with tamoxifen in Jan.(lobular is er pos).
I am so glad that you posted, I haven't found much info on this type of cancer. So I am glad there are more survivors.My doc doesn't focus on statistics either. I figure I am going to live as long as I am goin to live. No experation date!
I hope you are doing well and would love to hear from you.
bikergirl0 -
PLC
Hello,
The reason your doctor is trying to soothe your fears is that the word "pleomorphic" just describes the cell characteristics. Not only are the cells a variety of shapes and sizes, they tend to line up unlike typical cells which are more random. This sub category is associated with more aggressive cancers, but that means the tumor itself is high-grade, poorly differentiated and often HER2 positive.
I was first diagnosed with this type of breast cancer as well as ductal in 2007 and underwent all the standard therapy of surgery and AC+T. I had two tumors and positive node mets, but just barely. The cancer returned earlier this year and I'm undergoing my second round of treatment: surgery, radiation and chemo again.
This cancer has a habit of being bi-focal and bi-lateral, meaning it often comes with more than one tumor when first found and likes to show up in both breasts at some point or another. That makes the cancer more of a problem just because excising all of it can be more elusive. I honestly feel anyone with this variant should seriously consider mastectomy, but I'm not a doctor so my advice is only based on my experience. I chose to have a double-mastectomy, one side was prophylactic. The tumors were high-grade and poorly differentiated so there wasn't any reason to take it easy on treatment. I was HER2 neg though.
Every single cancer tumor has special characteristics and more of them are being identified and categorized, but this information doesn't always have any bearing on your treatment. The type and grade of the cancer is still the predominant determinant to how you will be treated. All breast cancer patients pretty much get AC+T or in the past CMF, because that's what works.
Of course it's impossible not to worry, but you shouldn't be concerned that you have a rare or distinguished cancer that is less curable. Being hormone positive is good and means you have many options. So just get through your treatment, take good care of yourself and move on. That's what the treatment is for, to let you get back to living!
Best of Luck to you and all the people posting here.0 -
PLC
Hello,
The reason your doctor is trying to soothe your fears is that the word "pleomorphic" just describes the cell characteristics. Not only are the cells a variety of shapes and sizes, they tend to line up unlike typical cells which are more random. This sub category is associated with more aggressive cancers, but that means the tumor itself is high-grade, poorly differentiated and often HER2 positive.
I was first diagnosed with this type of breast cancer as well as ductal in 2007 and underwent all the standard therapy of surgery and AC+T. I had two tumors and positive node mets, but just barely. The cancer returned earlier this year and I'm undergoing my second round of treatment: surgery, radiation and chemo again.
This cancer has a habit of being bi-focal and bi-lateral, meaning it often comes with more than one tumor when first found and likes to show up in both breasts at some point or another. That makes the cancer more of a problem just because excising all of it can be more elusive. I honestly feel anyone with this variant should seriously consider mastectomy, but I'm not a doctor so my advice is only based on my experience. I chose to have a double-mastectomy, one side was prophylactic. The tumors were high-grade and poorly differentiated so there wasn't any reason to take it easy on treatment. I was HER2 neg though.
Every single cancer tumor has special characteristics and more of them are being identified and categorized, but this information doesn't always have any bearing on your treatment. The type and grade of the cancer is still the predominant determinant to how you will be treated. All breast cancer patients pretty much get AC+T or in the past CMF, because that's what works.
Of course it's impossible not to worry, but you shouldn't be concerned that you have a rare or distinguished cancer that is less curable. Being hormone positive is good and means you have many options. So just get through your treatment, take good care of yourself and move on. That's what the treatment is for, to let you get back to living!
Best of Luck to you and all the people posting here.0 -
Plcgthistle said:PLC
Hello,
The reason your doctor is trying to soothe your fears is that the word "pleomorphic" just describes the cell characteristics. Not only are the cells a variety of shapes and sizes, they tend to line up unlike typical cells which are more random. This sub category is associated with more aggressive cancers, but that means the tumor itself is high-grade, poorly differentiated and often HER2 positive.
I was first diagnosed with this type of breast cancer as well as ductal in 2007 and underwent all the standard therapy of surgery and AC+T. I had two tumors and positive node mets, but just barely. The cancer returned earlier this year and I'm undergoing my second round of treatment: surgery, radiation and chemo again.
This cancer has a habit of being bi-focal and bi-lateral, meaning it often comes with more than one tumor when first found and likes to show up in both breasts at some point or another. That makes the cancer more of a problem just because excising all of it can be more elusive. I honestly feel anyone with this variant should seriously consider mastectomy, but I'm not a doctor so my advice is only based on my experience. I chose to have a double-mastectomy, one side was prophylactic. The tumors were high-grade and poorly differentiated so there wasn't any reason to take it easy on treatment. I was HER2 neg though.
Every single cancer tumor has special characteristics and more of them are being identified and categorized, but this information doesn't always have any bearing on your treatment. The type and grade of the cancer is still the predominant determinant to how you will be treated. All breast cancer patients pretty much get AC+T or in the past CMF, because that's what works.
Of course it's impossible not to worry, but you shouldn't be concerned that you have a rare or distinguished cancer that is less curable. Being hormone positive is good and means you have many options. So just get through your treatment, take good care of yourself and move on. That's what the treatment is for, to let you get back to living!
Best of Luck to you and all the people posting here.
Hi!
I hope your treatment is going well. I had the bi-lateral mastectomy so I hope that it doesn't come back. I didn't have radiation, I think they are just saving that for recurrence. I finished T/H A/C in Jan. I have been on herceptin and tamoxifen since. I have three more herceptin to go. If my next ct and pet come up clear in Nov. I was hormone pos on the PLC and her2 on the DC. Was treatment the same for you this time? Where did it come back? My eyelashes keep falling out. This is the third time! They think it might be the tamoxifen. But who knows.Has anyone else had this problem?You are right we have to focus on living. That is what I am trying to do. I have been enjoying my life the ups and downs, the fun times the little things!
I hope your treatment is going well!0 -
I also had radiation forbikergirl said:Plc
Hi!
I hope your treatment is going well. I had the bi-lateral mastectomy so I hope that it doesn't come back. I didn't have radiation, I think they are just saving that for recurrence. I finished T/H A/C in Jan. I have been on herceptin and tamoxifen since. I have three more herceptin to go. If my next ct and pet come up clear in Nov. I was hormone pos on the PLC and her2 on the DC. Was treatment the same for you this time? Where did it come back? My eyelashes keep falling out. This is the third time! They think it might be the tamoxifen. But who knows.Has anyone else had this problem?You are right we have to focus on living. That is what I am trying to do. I have been enjoying my life the ups and downs, the fun times the little things!
I hope your treatment is going well!
I also had radiation for this after mastectomy. My eyelashes fell out three times and then stopped doing that thank goodness!0
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