Does it seem recurrence is more prevalent with

smalldoggroomer

Maybe it's just me, but does it seem recurrence is more prevalent with some breast cancers and surgeries treatments then others? I have Inflammatory breast cancer. I read some place that recurrence is more likely to the brain with IBS. I also read that it is more likely to recur if only one breast is removed instead of both. Now I am thinking I should have both removed. Any thoughts? I hope I'm wrong. Thanks Kay

shy violet

Good morning, Kay...You may
Good morning, Kay...You may be on to something here...I don't have ibc, I have the invasive stuff...my recurrance was probably because of the late diagnosis and size at dx...here is what gets the corn off my cob, I have dense stuff on the non bc breast, and had asked for bilateral masectomy...in california it is the in thing now to save the breast...i say what the heck for?...then they said that it is so rare for bc to spread to the other side, so they would not do it...so now I am saggy sal on one side, a carved pumpkin gone bad on the other (removed some of the chest wall), and me ticked off every time I try to buy clothes, (every bra/filler for post masec) slides up to my neck, so I just don't wear them...but I do get frustrated when I see how many were able to get the bilateral done...what have you read? I know the ibc presents some very big challenges and I hope you are doing well...love to you, hubby and all your little doggies...shy

KathiM

The latest issue of CURE magazine....
Has an article that says yes, indeed, some breast cancers are more agressive than others...

Can't remember IBC being mentioned, but HER2 was.

You are doing a great job by investigating and knowing all you can about your kind of BC, there are so many different ones!

Hugs, Kathi

Rague

IBC is a very nasty Monster.
IBC is one of the more aggressive forms of breast cancer - unfortunately. From the stats I've found the likelihood of making 5 yrs with all types of BC is 87%, however with IBC the odds drop to between 25% and 40% (depending on the study).

I know that I'll be having a colonoscopy in Nov just as a check as PA told me that the colon is one of the 'places' that IBC likes to go. She wanted to wait a year to do it as none of the pre-chemo/surgery/chemo/rads tests showed any issues anywhere other than the breast and nodes. After rads, I was having a lot more pain in my back (have had arthritis there for years) so she ordered a bone scan then just to be sure it was just the arthritis getting worse and it is.

I only had a single mod. rad. mast. as my surgeon said that there was no more reason to expect the IBC to go to the othe breast than to anyother part of the body.

Personally the %'s mean nothing to me. My %'s are either 0% or 100% - either I won't have a reoccurance (0%) or I will have a reoccurance (100%) - just how I look at it.

Susan

shy violet

Rague said:

IBC is a very nasty Monster.
IBC is one of the more aggressive forms of breast cancer - unfortunately. From the stats I've found the likelihood of making 5 yrs with all types of BC is 87%, however with IBC the odds drop to between 25% and 40% (depending on the study).

I know that I'll be having a colonoscopy in Nov just as a check as PA told me that the colon is one of the 'places' that IBC likes to go. She wanted to wait a year to do it as none of the pre-chemo/surgery/chemo/rads tests showed any issues anywhere other than the breast and nodes. After rads, I was having a lot more pain in my back (have had arthritis there for years) so she ordered a bone scan then just to be sure it was just the arthritis getting worse and it is.

I only had a single mod. rad. mast. as my surgeon said that there was no more reason to expect the IBC to go to the othe breast than to anyother part of the body.

Personally the %'s mean nothing to me. My %'s are either 0% or 100% - either I won't have a reoccurance (0%) or I will have a reoccurance (100%) - just how I look at it.

Susan

Good grief...I despise
Good grief...I despise statistics...percents...surveys show...grrrr

carkris

shy violet said:

Good grief...I despise
Good grief...I despise statistics...percents...surveys show...grrrr

hind sight is 20/20 and I
hind sight is 20/20 and I wish I had a double mastectomy from the get go as I got it in the other breast and at a later stage than my first. I was actually planning a propholactic mastectomy when found the lump. Ask your doc about your chances of getting it in the other breast. My chances were not that high, but go figure!!! doing your homework empowers you !!!

survivorbc09

carkris said:

hind sight is 20/20 and I
hind sight is 20/20 and I wish I had a double mastectomy from the get go as I got it in the other breast and at a later stage than my first. I was actually planning a propholactic mastectomy when found the lump. Ask your doc about your chances of getting it in the other breast. My chances were not that high, but go figure!!! doing your homework empowers you !!!

I was told that the chances
I was told that the chances of a recurrence with a mastectomy is the same as with the chances of a lumpectomy with rads. They can never get all of your breast tissue, even with a mastectomy.

And, it seems that even if you have chemo, there have been several on here that got a recurrence.

I wish there was a clear cut answer as to what would help up to not get a recurrence, but, I think it just happens, much like we get bc to start with.

I just pray for a cure, so, that no one ever has to deal with bc ever.


Hugs, Jan

sal314

The Chance of Having a Recurrence
also goes up the more nodes you have that are positive. As my surgeon always says "it's all in the nodes, the less the better."

I hate statistics too, but you have to remember they're just that! My mom's best friend was diagnosed with stage 4 BC with 16 positive nodes 12 years ago! She's doing great and has not had a recurrence or any problems since her initial treatment!

I tend to look at those stories more than the others. Though I know one can't (and shouldn't) ignore stats, it's much more uplifting to focus on the good rather than the bad stories:)

Sally

Gabe N Abby Mom

another IBC answer
I saw my oncologist today and asked him point blank what is my risk of recurrence. He said "With IBC the risk of recurrence is about 80%, however the treatments we're doing bring the risk to about half of that." This is higher than the statistics for other types of breast cancer.

I then asked, also point blank, if I have a bilateral mastectomy what does that do to my risk of recurrence? His response was "It is more likely with IBC that it will metastasize to another area of the body." (He did not mention specific areas of the body.) I'm meeting with the surgeon next week to ask more mastectomy/reconstruction questions, I think it's well worth the copay.

So my advice (nothing original) is ask your doctors. As we know each person is different, and each cancer is different. I often email my onc with questions like this. It helps get it off my mind because I know I'll get a quick answer. I also have a section in my 'cancer binder' for questions, if it's something that might get complicated or has many parts, that's where I save the question for the next visit. I hope this helps.

hugs to you,

Linda

Gabe N Abby Mom

Gabe N Abby Mom said:

another IBC answer
I saw my oncologist today and asked him point blank what is my risk of recurrence. He said "With IBC the risk of recurrence is about 80%, however the treatments we're doing bring the risk to about half of that." This is higher than the statistics for other types of breast cancer.

I then asked, also point blank, if I have a bilateral mastectomy what does that do to my risk of recurrence? His response was "It is more likely with IBC that it will metastasize to another area of the body." (He did not mention specific areas of the body.) I'm meeting with the surgeon next week to ask more mastectomy/reconstruction questions, I think it's well worth the copay.

So my advice (nothing original) is ask your doctors. As we know each person is different, and each cancer is different. I often email my onc with questions like this. It helps get it off my mind because I know I'll get a quick answer. I also have a section in my 'cancer binder' for questions, if it's something that might get complicated or has many parts, that's where I save the question for the next visit. I hope this helps.

hugs to you,

Linda

Forgot to say...
...I love Rague's perspective on the stats!

Linda

meena1

Gabe N Abby Mom said:

Forgot to say...
...I love Rague's perspective on the stats!

Linda

IBC is very aggressive, I
IBC is very aggressive, I was diagnosed in July 2008 at stage 4. I have sufferred a reocuranance on June 3, 2010. You have to be followed very carefully if you have IBC, and yes, the stats are very low for this type of cancer, mostly because a lot of woman are misdiagosed in the beginning and this allows the cancer to spread. Below is where IBC spreads the most
1. bone
2. liver
3. brain

Of course, there is a chance of it spreading anywhere. I almost made 2 years, so please go for your follow-ups and make sure your oncologist is on top of your care

Hubby

Stats
I like stats, but the problem is that they don't have them specific enough, so that various groups are put together and the stats end up being skewed. Oncs go to this site Adjuvant Online which gives statistics for recurrence and survival rates based on various information. This includes age, other health problems, er status, tumor grade, tumor size, node involvement, hormone therapy, and chemo regimen.

What is doesn't take into account is pr; her2; brca; race; lumpectomy vs. masectomy;location of tumor within the breast... and a whole bunch of other risk factors... And when it does take into account tumor size, the groupings are too large; .1 to 1cm; 1.1 cm to 2; 2.1 to 3; 3.1 to 5; and 5.1 and greater. There is a huge difference in volumn of the tumor between the low and high ends of these groups. One of Donna's cancer books recommended going on this site and registering as a doctor to use the site, which we did. But use with caution if you do this. Statistics are like other people have said, just statistics. You are an individual.

But back to your question, from what I've read, triple negative breast cancers are more likely to metastize to soft tissue (like the brain) than er/pr + cancer.

Bob

carkris

Hubby said:

Stats
I like stats, but the problem is that they don't have them specific enough, so that various groups are put together and the stats end up being skewed. Oncs go to this site Adjuvant Online which gives statistics for recurrence and survival rates based on various information. This includes age, other health problems, er status, tumor grade, tumor size, node involvement, hormone therapy, and chemo regimen.

What is doesn't take into account is pr; her2; brca; race; lumpectomy vs. masectomy;location of tumor within the breast... and a whole bunch of other risk factors... And when it does take into account tumor size, the groupings are too large; .1 to 1cm; 1.1 cm to 2; 2.1 to 3; 3.1 to 5; and 5.1 and greater. There is a huge difference in volumn of the tumor between the low and high ends of these groups. One of Donna's cancer books recommended going on this site and registering as a doctor to use the site, which we did. But use with caution if you do this. Statistics are like other people have said, just statistics. You are an individual.

But back to your question, from what I've read, triple negative breast cancers are more likely to metastize to soft tissue (like the brain) than er/pr + cancer.

Bob

I dont ask for stats, they
I dont ask for stats, they just affect me negatively. If I was 99 percent(I know I'm not) I would worry about the other 1 percent. All I need stats for is to determine the degree of treatment I need. other than that no one can determine how an individual will do. some forms of breast cancer are more aggressive its true, but do your homework on your individual cancer, be your own advocate and try to live your life. I have fallen on both sides of stats so that is why I say this! hugs

cahjah75

Kay
I have heard that no lymph node involvement is a good thing. I don't really know the difference between Inflammatory and Invasive bc. I had Invasive Lobular Carcinoma and the tumor was 6.1 cm. My other breast already had Lobular Carcinoma in Situ so I decided on bilateral mastectomy. Fortunately I had no lymph node involvement. But, no surgeon can ever be sure they got all the cancer cells and that's why oncologists treat each patient with different chemo cocktails. My sister with DCIS 9 years ago didn't think she'd have a recurrence after lumpectomy, rads and taking Tamoxifen for 5 years but she did and goes for a lumpectomy on Oct 14 for her other breast, then rads and not sure about pill again. This makes my other sister (8 year survivor) who had lumpectomy and 7 positive lymph nodes, chemo & rads and Arimidex for 5 years very nervous. She goes for her yearly visit with oncologist & mammo this month. I don't know if statistics would make me feel better or if I would worry more.
Char

Rague

cahjah75 said:

Kay
I have heard that no lymph node involvement is a good thing. I don't really know the difference between Inflammatory and Invasive bc. I had Invasive Lobular Carcinoma and the tumor was 6.1 cm. My other breast already had Lobular Carcinoma in Situ so I decided on bilateral mastectomy. Fortunately I had no lymph node involvement. But, no surgeon can ever be sure they got all the cancer cells and that's why oncologists treat each patient with different chemo cocktails. My sister with DCIS 9 years ago didn't think she'd have a recurrence after lumpectomy, rads and taking Tamoxifen for 5 years but she did and goes for a lumpectomy on Oct 14 for her other breast, then rads and not sure about pill again. This makes my other sister (8 year survivor) who had lumpectomy and 7 positive lymph nodes, chemo & rads and Arimidex for 5 years very nervous. She goes for her yearly visit with oncologist & mammo this month. I don't know if statistics would make me feel better or if I would worry more.
Char

www.breastcancertreatment.in/
www.breastcancertreatment.in/inflammatory_breast_cancer2.htm should give you some into on IBC.

As much as I hate 'stats', I will use some. The 5 yr survival rate for all BC is 87%, with IBC that drops to between 25% and 40% depending on the study.

All forms of BC are BAD but there is no one BC - it is a multi-headed Monster that attacks differently with it's different heads.

Susan