I know everyone's situation is different but....

MMO3

laughs_a_lot said:

Yup he's a cutie
I used a lot of my time after my lumpectomy to study about triple negative bc. The thought occured to me just after this post that I don't know if other breast cancers have a BCRA2 attached to them. I have not heard that they have and suspect that triple negative is the only one with that designation. It sounds like both breasts were affected so I am wondering if you had triple negative in both breasts. (At least I think that is what you stated). Do you have a copy of your pathology report? If so (and it is a difficult thing to read) you may be able to get some answers out of there. It would tell you if both breasts had the same kind of cancer. I know if I had more than one kind of bc I would be confused too.

no copy of my pathology yet
I will ask for one when i see him that appointment day- i DO know that i was NOT the same kind of cancer as i recalled as sooon as you mentioned or asked that. It was not the same but havent a clue what that side was called then. i know my lumps started out on the right side and thru some MRI scan i took..it was ten decided that it be best I remove both due to suspicious spots in several areas on left but NOT the same kind i recall Dr. saying as they had different shaping or whatever medical words they use but do remember this being said. WSould it be better if it were the same? stupid question im sure sorry

laughs_a_lot

MMO3 said:

no copy of my pathology yet
I will ask for one when i see him that appointment day- i DO know that i was NOT the same kind of cancer as i recalled as sooon as you mentioned or asked that. It was not the same but havent a clue what that side was called then. i know my lumps started out on the right side and thru some MRI scan i took..it was ten decided that it be best I remove both due to suspicious spots in several areas on left but NOT the same kind i recall Dr. saying as they had different shaping or whatever medical words they use but do remember this being said. WSould it be better if it were the same? stupid question im sure sorry

Not really a stupid question. Actually a smart question.
Radiation is probably going to be the same for any kind of bc. Chemo is often different for different types of breast cancer. There is a certain chemo regimen used for triple negative bc. (If you indeed have triple negative). Chemo is actually the best weapon in the aresenal of things to do for triple negative. There are a mixture of a several things given for the first several chemo treatments, then the last several have 1 or two other chemicals that seem to be effective against it. The good news is that if you happen to be allergic to one of the chemicals they have some back up ones to use as well. The ones for triple negative will make you loose your hair. I heard of one lady with long hair who cut hers and added it to a couple of scarves and hats so that it looked like she hadn't lost hair. Clever girl she must have been talented.

Now since you have another kind of bc they will probably give you different chemicals for that kind. However, one or two of the chemicals for triple negative might be a cross over drug that will treat the other kind too. Let's hope so. Some of the other kinds of bc have you taking pills for a year or more after treatment. Once you get done with the IV drips on triple negative there are no pills to take. Hope this makes the muddy water a little clearer for you.

MMO3

laughs_a_lot said:

Not really a stupid question. Actually a smart question.
Radiation is probably going to be the same for any kind of bc. Chemo is often different for different types of breast cancer. There is a certain chemo regimen used for triple negative bc. (If you indeed have triple negative). Chemo is actually the best weapon in the aresenal of things to do for triple negative. There are a mixture of a several things given for the first several chemo treatments, then the last several have 1 or two other chemicals that seem to be effective against it. The good news is that if you happen to be allergic to one of the chemicals they have some back up ones to use as well. The ones for triple negative will make you loose your hair. I heard of one lady with long hair who cut hers and added it to a couple of scarves and hats so that it looked like she hadn't lost hair. Clever girl she must have been talented.

Now since you have another kind of bc they will probably give you different chemicals for that kind. However, one or two of the chemicals for triple negative might be a cross over drug that will treat the other kind too. Let's hope so. Some of the other kinds of bc have you taking pills for a year or more after treatment. Once you get done with the IV drips on triple negative there are no pills to take. Hope this makes the muddy water a little clearer for you.

muddy waters more clear
Actually...clear-crystal clear. I thank you as Doctors just dont explain it that simple HOWEVER, I know its not that simple its much info but i just process it more slowly but when described and explained the way you ladies do..IM STARTING to get it. SO, THANK YOU. I cant wait to ask for the pathology report-i just dont ever remember that sentence being said...'Triple Negative' ever being a subject.

Rague

MMO3 said:

muddy waters more clear
Actually...clear-crystal clear. I thank you as Doctors just dont explain it that simple HOWEVER, I know its not that simple its much info but i just process it more slowly but when described and explained the way you ladies do..IM STARTING to get it. SO, THANK YOU. I cant wait to ask for the pathology report-i just dont ever remember that sentence being said...'Triple Negative' ever being a subject.

Triple Negative refers to
Triple Negative refers to the status of ER, PR and HER2. It is Er-, PR- and HER2-. If you are ER+, PR+ or HER2+ in any combination, you are not TN. It is not a type of BC but a modification of whatever type (DCIS, IDC, LCIS, ILC or IBC).

You might call the Cancer Center you will be going to and ask to talk with their Breast Cancer Navigator and ask for an information packet. I was given quite a bit of stuff the first time I saw Dr. P which was 5 days after DX. As soon as I checked in, she came out and took me to her office and gave me a nice little tote with a book, (told me which chapters to read first), pamphlets, a day planner and some other stuff. You could also call/go by your local ACS office for pamphlets.

Winyan - The Power Within

Susan

sdukowitz

Remember there are also options you can ask about I was offered the 4 special aka known as the canadian version some on this site did the two times a day schedule ... although each case and dr has their own recommendatiins ... I did not have chemo only the radiation and now tamoxifin ..... the shorter versions i am referring to are for radiation optiins, not chemo

24242

My Experience
Stage 3 IDC who actually was a triple negative with 11 out of 21 positive nodes on the side of the cancer. The other breast was clear at the time of diagnosis. I had wanted a double mastectomy but was talked out of it by surgeon and my nurse mother. They both felt that treating the cancer was more important and then if I still felt the same way the second one would be taken off. I just didn't think I could go through that again but I did almost a year to the day after more lumps grew but were benign.
I was treated with chemo and radiation but HER negative because at that time knew nothing about triple negative. I had 6 rounds of a 5 drug cocktail with all side affects that I knew about before hand and a small part of population are sensative to everything we take not just chemo. I had 15 high dose radiation treatments to the South of me my sisters do radiation over double the time. By the way my cancer did not meet any of the criteria out there but it was stage 3 which shocked the pants off everyone but me...
I didn't want to do treatments at all because I had been ill for years and was already sick and tired. I had a son who needed his mother and it was made clear I didn't have achoice.
It is all do able. When I decided to do treatments I decided to LIVE and would do anything I could to get the most of being treated. If that meant a couple of more percentages to LIFE by doing radiation I was doing it and made them give it to me though their recommendation was I wouldn't get but a couple percentages out of it. I told them a couple more was better than no more so I wasn't stopping at that.
I found out I was triple negative 14 years after my fight for life and shocked my oncologist who couldn't believe I thought I could have cancer again. I had a huge lump in my arm and the last time I had to beg for help and I wasn't waiting for that to happen again. I demanded they drag my records out of archives and that is when they found out a whole pile more about the cancer I did have. My survival rate at that time was 40%.
STATS are just that and all made to be broken. I do not regret any of my choices though if you go back you can read about some of my experiences the great thing about a site like this.
I will keep you close at heart and know Women Survive the most Amazing things. Humans are Survivors and though we all have lost friends and family along they way they too survived the most incredible things to be there as long as they could...
Be good to yourself always,
Tara

eihtak

24242 said:

My Experience
Stage 3 IDC who actually was a triple negative with 11 out of 21 positive nodes on the side of the cancer. The other breast was clear at the time of diagnosis. I had wanted a double mastectomy but was talked out of it by surgeon and my nurse mother. They both felt that treating the cancer was more important and then if I still felt the same way the second one would be taken off. I just didn't think I could go through that again but I did almost a year to the day after more lumps grew but were benign.
I was treated with chemo and radiation but HER negative because at that time knew nothing about triple negative. I had 6 rounds of a 5 drug cocktail with all side affects that I knew about before hand and a small part of population are sensative to everything we take not just chemo. I had 15 high dose radiation treatments to the South of me my sisters do radiation over double the time. By the way my cancer did not meet any of the criteria out there but it was stage 3 which shocked the pants off everyone but me...
I didn't want to do treatments at all because I had been ill for years and was already sick and tired. I had a son who needed his mother and it was made clear I didn't have achoice.
It is all do able. When I decided to do treatments I decided to LIVE and would do anything I could to get the most of being treated. If that meant a couple of more percentages to LIFE by doing radiation I was doing it and made them give it to me though their recommendation was I wouldn't get but a couple percentages out of it. I told them a couple more was better than no more so I wasn't stopping at that.
I found out I was triple negative 14 years after my fight for life and shocked my oncologist who couldn't believe I thought I could have cancer again. I had a huge lump in my arm and the last time I had to beg for help and I wasn't waiting for that to happen again. I demanded they drag my records out of archives and that is when they found out a whole pile more about the cancer I did have. My survival rate at that time was 40%.
STATS are just that and all made to be broken. I do not regret any of my choices though if you go back you can read about some of my experiences the great thing about a site like this.
I will keep you close at heart and know Women Survive the most Amazing things. Humans are Survivors and though we all have lost friends and family along they way they too survived the most incredible things to be there as long as they could...
Be good to yourself always,
Tara

Same time frame as you....
Last week I also had a double mastectomy and my doc plans on at least some drain removal this week. I am like you in learning as we go. My cancer is called "secretory carcinoma" and is a very rare slow growing type. I do have a history of cancer and am seeing a genetic counselor in a couple months. My doctor said that chemo has little effect on slow growing cells so unless after examination of a couple lymph nodes changes his mind no chemo or radiation. My tumor is I think its called estrogen positive so needs estrogen to thrive....so I will take Arimidex for 5yrs to help block the estrogen, it all kind of makes sense when people from this site explain doesn't it?? The drains are so annoying, but now I am hoping he leaves at least 2 of them in longer because it sounds as tho problems can arrise from fluid build-up. Good luck and please keep in touch as you recover. Prayers for all!