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

MMO3
MMO3 Member Posts: 44
Hello friends..
First off, god bless and constant positive thoughts and energy to everyone and their cancer experience (hugs)

I am wondering if anyone could possibly help narrow down my options of what to expect. I am just a week home still healing from my bilateral mastectomy-still have in the drains but plan on having them out next Tues.(27th) Then not until April do i see the oncologist. I didnt even think i would need chemo as removing both breasts rid the tumors and calcification. (am still learning i guess) I am not even a full month from BC diagnosis but was staged early..(stage 2 /grade 2) I am assuming I havent any cancer any longer due to removal of both and such- margins were clear so still a alittle confused as to why a person still goes to chemo. Maybe i wont even need alot of it as I havent a clue what that appointment will be until I go just was wondering what to expect i guess. I know my DNA genetic testing results just came in this past thurs as brca2. My doctor was a bit surprised as no cancer runs on my parents side. I would now be the first out of my family tree- Does anyone have any ideas as to what to expect I KNOW its difficult answering as we all have diff situations but I am just confused as to why a person would need radiation(which in my case i didnt) and or chemo? I had both breasts removed so what would there be to shrink or whatever it does?
thx and best thoughts and wishes to ALLLLL! xo
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Comments

  • Rague
    Rague Member Posts: 3,653 Member
    First do not assume all
    First do not assume all drains will come out on the 27th - some might, some might not. It all depends on how much drainage there still is. I will agree that drains are a bother but developing a seroma because the drain came out too soon is a pain and a bother. One of my drains came out at 2 weeks post surgery and the other at 4 weeks but really should have been left a bit longer. Dr G. Wanted to go ahead and take it out as he thought that the drain itself was causing irritation. But it wasn't - developed a large seroma which is not fun.
    Different types of BC have different protocols for treatment and different Dr have different preferences.

    In my case (IBC). I did A/C, followed by mod. rad. mast., followed by Taxol and last rads. (Femara still). Some other Drs will do 2 different chemos both before surgery. You didn't mention your ER/PR or HER2 status as those also effect the TX. Has a rads Dr told you that you don't need rads? Surgeons are great at their speciality - surgery - but their speciality is not chemo or rads just as the Chemo Dr or Rads Dr is not an expert in the other areas nor are they surgeons.

    Just because your Dr got the known areas and most of the other breast tissue - there is no way that every bit of breast tissue is gotten out. Unfortunately once there is cancer within the body the best we ever (at this time as there is no cure) is NED (No Evidence of Disease). The different types have different survival rates - the over all average for all types combined is 87%.

    Just my thoughts and experiences - you get lots more.

    Winyan - The Power Within

    Susan
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    You are not alone
    I am sorry to hear cancer has invaded your life. Let me say you sure have found a haven in CSN and will receive much information and support from the fellow Pinks and Men who are members.

    From what I understand, you tested positive for BRACA 2. You are in a very unique position and your oncologist will fill you in on what it all means. You mentioned being Stage 2, Grade 2, having a double mastectomy, and whether chemo was needed since your breast were removed.

    Unfortunately, having your breast removed doesn't necessarily spare you from treatment( chemo, rads). Cancer is very sneaky and evil. If invasive, doctors have no way of knowing if all the cells were removed. That is why doctors recommend following up with treatment to make sure any cells left behind are obliterated.

    As you move forward with your recovery, you will learn more about cancer. It's a ton of information to take in at once. Take it one step at a time and remember to breathe.

    Take care, God bless.
  • missrenee
    missrenee Member Posts: 2,136 Member
    Rague said:

    First do not assume all
    First do not assume all drains will come out on the 27th - some might, some might not. It all depends on how much drainage there still is. I will agree that drains are a bother but developing a seroma because the drain came out too soon is a pain and a bother. One of my drains came out at 2 weeks post surgery and the other at 4 weeks but really should have been left a bit longer. Dr G. Wanted to go ahead and take it out as he thought that the drain itself was causing irritation. But it wasn't - developed a large seroma which is not fun.
    Different types of BC have different protocols for treatment and different Dr have different preferences.

    In my case (IBC). I did A/C, followed by mod. rad. mast., followed by Taxol and last rads. (Femara still). Some other Drs will do 2 different chemos both before surgery. You didn't mention your ER/PR or HER2 status as those also effect the TX. Has a rads Dr told you that you don't need rads? Surgeons are great at their speciality - surgery - but their speciality is not chemo or rads just as the Chemo Dr or Rads Dr is not an expert in the other areas nor are they surgeons.

    Just because your Dr got the known areas and most of the other breast tissue - there is no way that every bit of breast tissue is gotten out. Unfortunately once there is cancer within the body the best we ever (at this time as there is no cure) is NED (No Evidence of Disease). The different types have different survival rates - the over all average for all types combined is 87%.

    Just my thoughts and experiences - you get lots more.

    Winyan - The Power Within

    Susan

    I understand your confusion
    As Susan says above, however, having a double mastectomy does not necessarily mean one or two tiny cancer cells haven't left the area and are in the tissue that is left (as Susan said above--there is some) or traveling somewhere else. That's where the chemo comes in. It is what is called "systemic treatment" that goes after any of those rogue cells that may have migrated to other areas. I look at it as added insurance.

    Your choices are yours, however, and you must do what you feel is right for you.

    Best of luck and blessing on your journey.

    Hugs, Renee

    (Don't rush those drains--one of mine was in for 5 weeks)
  • cathyp
    cathyp Member Posts: 376 Member

    You are not alone
    I am sorry to hear cancer has invaded your life. Let me say you sure have found a haven in CSN and will receive much information and support from the fellow Pinks and Men who are members.

    From what I understand, you tested positive for BRACA 2. You are in a very unique position and your oncologist will fill you in on what it all means. You mentioned being Stage 2, Grade 2, having a double mastectomy, and whether chemo was needed since your breast were removed.

    Unfortunately, having your breast removed doesn't necessarily spare you from treatment( chemo, rads). Cancer is very sneaky and evil. If invasive, doctors have no way of knowing if all the cells were removed. That is why doctors recommend following up with treatment to make sure any cells left behind are obliterated.

    As you move forward with your recovery, you will learn more about cancer. It's a ton of information to take in at once. Take it one step at a time and remember to breathe.

    Take care, God bless.

    Oncotype Test
    I believe if you are able and your insurance covers this test, it will aid you and your doctors to make the decision to proceed with chemo or not. My score was 8, so I did not do the chemo. It was explained to me that chemo would only reduce my chance of recurrence by 2%.
    Best wishes to you.
  • MMO3
    MMO3 Member Posts: 44
    Rague said:

    First do not assume all
    First do not assume all drains will come out on the 27th - some might, some might not. It all depends on how much drainage there still is. I will agree that drains are a bother but developing a seroma because the drain came out too soon is a pain and a bother. One of my drains came out at 2 weeks post surgery and the other at 4 weeks but really should have been left a bit longer. Dr G. Wanted to go ahead and take it out as he thought that the drain itself was causing irritation. But it wasn't - developed a large seroma which is not fun.
    Different types of BC have different protocols for treatment and different Dr have different preferences.

    In my case (IBC). I did A/C, followed by mod. rad. mast., followed by Taxol and last rads. (Femara still). Some other Drs will do 2 different chemos both before surgery. You didn't mention your ER/PR or HER2 status as those also effect the TX. Has a rads Dr told you that you don't need rads? Surgeons are great at their speciality - surgery - but their speciality is not chemo or rads just as the Chemo Dr or Rads Dr is not an expert in the other areas nor are they surgeons.

    Just because your Dr got the known areas and most of the other breast tissue - there is no way that every bit of breast tissue is gotten out. Unfortunately once there is cancer within the body the best we ever (at this time as there is no cure) is NED (No Evidence of Disease). The different types have different survival rates - the over all average for all types combined is 87%.

    Just my thoughts and experiences - you get lots more.

    Winyan - The Power Within

    Susan

    not to assume...cont.
    thank u so much for that education of information and explaining it step by step like that. I learn in detail like that and process this ton of info ive been given at a much slower pace. I sometimes leave my appointments and ask myself later what i learned. Like i said its not even been a month yet but truly thought it was removed due to the removal of my breasts...explaining it to my kids is tricky when im uncertain myself THATS why I find this site and all of you who take time to reply to be so helpful and APPRECIATE and learn from everyone's story and shared situation. I forgot to mention it was invasive lobe carcinoma (sorry if miss spell)...i am not sure about the hr er/pr thing but remember estrogen progesterone being a subject so if thats the acronym for it i believe ER/PR.
    I think im learning from you all more than the book they provide you with.
    thank you for taking the time i hope all of you feel my hug thru these discussions. I just want to learn overnite and realize its just too much to comprehend. I want to explain it right and your reply was helpful. So thank u again
  • MMO3
    MMO3 Member Posts: 44
    missrenee said:

    I understand your confusion
    As Susan says above, however, having a double mastectomy does not necessarily mean one or two tiny cancer cells haven't left the area and are in the tissue that is left (as Susan said above--there is some) or traveling somewhere else. That's where the chemo comes in. It is what is called "systemic treatment" that goes after any of those rogue cells that may have migrated to other areas. I look at it as added insurance.

    Your choices are yours, however, and you must do what you feel is right for you.

    Best of luck and blessing on your journey.

    Hugs, Renee

    (Don't rush those drains--one of mine was in for 5 weeks)

    understanding and getting less confused
    truly.....thank you. Every word you ladies share make a difference and i feel better inside knowing im comprehending- you provide a better insight almost visual making it easier to explain to kids. thx again for ur time
    Hugs back
  • New Flower
    New Flower Member Posts: 4,294
    cathyp said:

    Oncotype Test
    I believe if you are able and your insurance covers this test, it will aid you and your doctors to make the decision to proceed with chemo or not. My score was 8, so I did not do the chemo. It was explained to me that chemo would only reduce my chance of recurrence by 2%.
    Best wishes to you.

    Unfortunately, due to genetic mutation you are in the different
    I am very sorry that have have a genetic mutation. Unfortunately, due to genetic mutation you are in the different group. Most likely, and your oncologist will tell you, Oncotype test will be not applicable to you.Theoretical rate of recurrence is higher for patients with genetic mutation, so criteria for treatment and monitoring are different for them. Please see a genetic counselor for a complete discussion about genetic mutation situation. You have made a first important step -mastectomy. Please try to recover and fill better soon.
    Best of luck to you and keep us posted
  • MMO3
    MMO3 Member Posts: 44

    You are not alone
    I am sorry to hear cancer has invaded your life. Let me say you sure have found a haven in CSN and will receive much information and support from the fellow Pinks and Men who are members.

    From what I understand, you tested positive for BRACA 2. You are in a very unique position and your oncologist will fill you in on what it all means. You mentioned being Stage 2, Grade 2, having a double mastectomy, and whether chemo was needed since your breast were removed.

    Unfortunately, having your breast removed doesn't necessarily spare you from treatment( chemo, rads). Cancer is very sneaky and evil. If invasive, doctors have no way of knowing if all the cells were removed. That is why doctors recommend following up with treatment to make sure any cells left behind are obliterated.

    As you move forward with your recovery, you will learn more about cancer. It's a ton of information to take in at once. Take it one step at a time and remember to breathe.

    Take care, God bless.

    your so right, not alone in this is at least comforting
    if there is one thing i understand..it is the fact im not alone. You are so right and it provides me with comfort and reassurance being involved in these discussions too and that is why i am so thankful that i have been directed to this site. I hope to one day be helpful and comforting to the newly diagnosed. I feel the family love here and just want to be able to help not only thru prayer and positive energy but to one day offer and share the knowledge you ladies have shared. ITS sooo comforting.
    Thank you and god bless you also
  • MMO3
    MMO3 Member Posts: 44
    cathyp said:

    Oncotype Test
    I believe if you are able and your insurance covers this test, it will aid you and your doctors to make the decision to proceed with chemo or not. My score was 8, so I did not do the chemo. It was explained to me that chemo would only reduce my chance of recurrence by 2%.
    Best wishes to you.

    Oncotype test
    thank yo i will mention this at my next follow up- and to my knowledge after I meet my deductible everything elso is 100% covered so worth asking about this THANK you Cathyp!
    Best to you too (hugs)
  • Rague
    Rague Member Posts: 3,653 Member
    MMO3 said:

    not to assume...cont.
    thank u so much for that education of information and explaining it step by step like that. I learn in detail like that and process this ton of info ive been given at a much slower pace. I sometimes leave my appointments and ask myself later what i learned. Like i said its not even been a month yet but truly thought it was removed due to the removal of my breasts...explaining it to my kids is tricky when im uncertain myself THATS why I find this site and all of you who take time to reply to be so helpful and APPRECIATE and learn from everyone's story and shared situation. I forgot to mention it was invasive lobe carcinoma (sorry if miss spell)...i am not sure about the hr er/pr thing but remember estrogen progesterone being a subject so if thats the acronym for it i believe ER/PR.
    I think im learning from you all more than the book they provide you with.
    thank you for taking the time i hope all of you feel my hug thru these discussions. I just want to learn overnite and realize its just too much to comprehend. I want to explain it right and your reply was helpful. So thank u again

    What the Surgeon could see
    What the Surgeon could see sa removed along with the other tissue he/she took but not all tissue was.

    I know basically nothing about ILC (Invasive Lobular Carcinoma) but there are those here who do. I'm IBC (Inflammatory Breast Cancer) so that's what I've spent the vast majority of time learning about.

    Very simplistically ER and PR refers to to what 'fed' the particular cancer. ER is Estrogen Receptor and PR is Progestrine Receptor. I'm ER + so estrogen 'fed' my IBC so I'm on Femara/letrozole for the rest of my life to block the uptake of estrogen. I don't know much about HER2 either as I'm HER2- so it isn't an issue for me. If you are HER2+ then it will probably be a year of Heceptin infusions.

    ASK - ASK! Remember thought that we are each unique in all ways. Our bodies do not respond the same nor do we.

    Winyan - The Power Within

    Susan
  • MMO3
    MMO3 Member Posts: 44

    Unfortunately, due to genetic mutation you are in the different
    I am very sorry that have have a genetic mutation. Unfortunately, due to genetic mutation you are in the different group. Most likely, and your oncologist will tell you, Oncotype test will be not applicable to you.Theoretical rate of recurrence is higher for patients with genetic mutation, so criteria for treatment and monitoring are different for them. Please see a genetic counselor for a complete discussion about genetic mutation situation. You have made a first important step -mastectomy. Please try to recover and fill better soon.
    Best of luck to you and keep us posted

    genetic mutation...?
    looks like i have alot to ask and thank u for taking time to reply. I have some questions to raise it appears and will be in touch with everyone just as I have best of wishes and concern for you all.

    Thank u for your time
  • New Flower
    New Flower Member Posts: 4,294
    MMO3 said:

    genetic mutation...?
    looks like i have alot to ask and thank u for taking time to reply. I have some questions to raise it appears and will be in touch with everyone just as I have best of wishes and concern for you all.

    Thank u for your time

    BRAC2 positive means that individual has Genetic mutation
    I am sorry for not explaining. Being BRAC2 positive means that individual has a genetic mutation in that gene. Please ask for referrals to talk to genetic counselor. It is a very useful discussion you need to have to make choices for your treatment.
    If somebody can go with you to your oncologist it will be very helpful. please ask the person take notes so you can process information later.
    Hugs
  • MMO3
    MMO3 Member Posts: 44
    Rague said:

    What the Surgeon could see
    What the Surgeon could see sa removed along with the other tissue he/she took but not all tissue was.

    I know basically nothing about ILC (Invasive Lobular Carcinoma) but there are those here who do. I'm IBC (Inflammatory Breast Cancer) so that's what I've spent the vast majority of time learning about.

    Very simplistically ER and PR refers to to what 'fed' the particular cancer. ER is Estrogen Receptor and PR is Progestrine Receptor. I'm ER + so estrogen 'fed' my IBC so I'm on Femara/letrozole for the rest of my life to block the uptake of estrogen. I don't know much about HER2 either as I'm HER2- so it isn't an issue for me. If you are HER2+ then it will probably be a year of Heceptin infusions.

    ASK - ASK! Remember thought that we are each unique in all ways. Our bodies do not respond the same nor do we.

    Winyan - The Power Within

    Susan

    Winyan
    thank you Susan..I believe I am ER pos. as well but will ask ask and ask some more. Its just getting use to the terminology and didnt realize the depths of each medical term. I believe I just didnt hear or understand the depths of this all and am learning real quick and do need to have an extra set of ears when i go to the appointments.
    Thank you for your info

    I forget..did you do the chemo treatments or is it a pill form you have to be on for rest of your life?

    p.s I love learning something new like Winyan meaning -The Power Within .. I love it and believe in that!
  • missrenee
    missrenee Member Posts: 2,136 Member
    MMO3 said:

    your so right, not alone in this is at least comforting
    if there is one thing i understand..it is the fact im not alone. You are so right and it provides me with comfort and reassurance being involved in these discussions too and that is why i am so thankful that i have been directed to this site. I hope to one day be helpful and comforting to the newly diagnosed. I feel the family love here and just want to be able to help not only thru prayer and positive energy but to one day offer and share the knowledge you ladies have shared. ITS sooo comforting.
    Thank you and god bless you also

    So glad you're finding comfort here
    We all love being able to help. Since there is so much info thrown at you at once (and most of it is quite confusing at first), it would help to write down all questions before your next appointment and, if possible, bring someone with you. The doctors expect that. I had 3 pages written down and brought my husband and a dear friend who is in the medical profession. Three sets of ears were definitely better than 1.

    I love the fact that you are trying to learn all you can up front--this will make you an informed patient and in my humble opinion, informed patients do so much better on the road to recovery.

    Hugs, Renee
  • Rague
    Rague Member Posts: 3,653 Member
    MMO3 said:

    Winyan
    thank you Susan..I believe I am ER pos. as well but will ask ask and ask some more. Its just getting use to the terminology and didnt realize the depths of each medical term. I believe I just didnt hear or understand the depths of this all and am learning real quick and do need to have an extra set of ears when i go to the appointments.
    Thank you for your info

    I forget..did you do the chemo treatments or is it a pill form you have to be on for rest of your life?

    p.s I love learning something new like Winyan meaning -The Power Within .. I love it and believe in that!

    I'm IBC - it is the most
    I'm IBC - it is the most aggressive form of BC and can literally appear over night. If 'you' want to go on stats - only 25% of us make it to the 'Majik' 5 years. I'm one of the lucky ones - I'm 2 1/2 yrs post DX and riding NED. 17 days after DX I started chemo. Surgery came shortly followed by more chemo and rads. The. Femara is for the ER+ and was originally told that it would be for 5 yrs - new research says for life.

    The 'story' behind Winyan - The Power Within is that it is a slogan (for lack of a the right word). Our local VA facility has 2 women's Retreats a year - the only ones of the type in the States . These Retreats deal very much with PTSD and women veterans along with women who have a relative (wives/SO/sisters/relatives/ect.) who is PTSD. Winyan is Lakota for woman. Women are strong so Winyan - The Power Within'. So it fits. I'll be going to the next one in late April and starting it with a Sweat Lodge (an option). These Retreats are free to the participants (start at noon Fri and end after lunch on Sun.) Food and lodge is covered (Guy Vets cook for us - food is always great) and no government money is spent. It is funded by grants from DAV primarily and other private donations.

    Winyan - The Power Within

    Susan
  • Frankie Shannon
    Frankie Shannon Member Posts: 457
    It would depend on what kind
    It would depend on what kind of cancer you had.I had a Bil.Mastectomy and 2 lymph nodes removed from each side and came back Neg.I am on Tamoxifen which is Harmon therapy as mine was ER positive PR positive no rads or chemo.As some one else said there is still breast tissue left.So it is up to you and your onc.what to do that is best for you.Keep us posted.
    Hugs Frankie
  • MMO3
    MMO3 Member Posts: 44

    It would depend on what kind
    It would depend on what kind of cancer you had.I had a Bil.Mastectomy and 2 lymph nodes removed from each side and came back Neg.I am on Tamoxifen which is Harmon therapy as mine was ER positive PR positive no rads or chemo.As some one else said there is still breast tissue left.So it is up to you and your onc.what to do that is best for you.Keep us posted.
    Hugs Frankie

    depends on what kind reply
    ...thank you I know i had 3 removed on one side and 2 on the other side ( i believe that is referred to as margins? or something but was told they were clear..i need to start listening and remembering correct words or terminology. You all are taking time to share input and i need to be accurate in description but other than (ILC) BC and the genetic testing coming back as mutated gene ...and ER + I wonder what else is so very important to know> my removal of both breasts was the simply answer to this all and just cant believe all the diff info i should be aware of. Like i said perhaps once i greet and meet my oncologist i will be fully informed and or better educated. I obviously need to alert myself and be better aware of what means what. Ugh..thanks all and dont mean to sound so ignorant. thank u all again
    I just remember being told it was likely that id start chemo treatments well before the surgery..I am wondering what they based that off of or maybe i heard wrong and it all just meant we wait to see what Oncologist says..Ihave to wait until that appointment (april 5th) Cant wait for these drain bags to be removed too as i feel i will start healing faster ANYways- AGAIN thank you for your time
    xo
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    BCRA 2
    If you have the BCRA 2 gene it would mean that you likely have Triple Negative Breast Cancer. Triple negative is a fast growing breast cancer. Do you know if you had any lymph nodes involved? I have triple negative stage 2 with two nodes involved. I opted for a lumpectomy but got the chemo and radiation. Those sneaky little cancer cells can find pathways that are unusual and affect other body parts. That is why the chemo runs all over your body and kills off any cancer cells they run into. Then radiation is given to the breasts just in case a cell or two has hung around in the breast. A single cell could not be detected but once a single cell multiplies it can be. The most likely place for a single cell to be is in the breast as it would not have to travel too far. This is why you get radiation of the breast. All of this is a way to hedge your bets for good health. Considering Triple Negative is an aggressive growth breast cancer it is even more reason to hedge your bets and get all available treatments that can be offered.
  • MMO3
    MMO3 Member Posts: 44

    BCRA 2
    If you have the BCRA 2 gene it would mean that you likely have Triple Negative Breast Cancer. Triple negative is a fast growing breast cancer. Do you know if you had any lymph nodes involved? I have triple negative stage 2 with two nodes involved. I opted for a lumpectomy but got the chemo and radiation. Those sneaky little cancer cells can find pathways that are unusual and affect other body parts. That is why the chemo runs all over your body and kills off any cancer cells they run into. Then radiation is given to the breasts just in case a cell or two has hung around in the breast. A single cell could not be detected but once a single cell multiplies it can be. The most likely place for a single cell to be is in the breast as it would not have to travel too far. This is why you get radiation of the breast. All of this is a way to hedge your bets for good health. Considering Triple Negative is an aggressive growth breast cancer it is even more reason to hedge your bets and get all available treatments that can be offered.

    love the wood pecker! blast from the past..best cartoon ever
    hmm... i most certainly cant wait for the questions i have for next appointment. Im diving into this now as if Ive just been diagnosed but with a little more knowledge thanks to all of you who ake time to reply-
    I already had the bilateral surgery so i wouldnt think ther is anything to radiate but like i said..i dont know. I thought i recalled that radiation would not be and chemo would be a treatment plan even before surgery...time will tell i dont remember anymore i swear. Im just going off what i recall being mentioned before surgery and after for my follow up- i dont see the oncologist for awhile yet

    thanks though
    and cute picture..woody wood pecker did make me laugh a lot back in the day
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    MMO3 said:

    love the wood pecker! blast from the past..best cartoon ever
    hmm... i most certainly cant wait for the questions i have for next appointment. Im diving into this now as if Ive just been diagnosed but with a little more knowledge thanks to all of you who ake time to reply-
    I already had the bilateral surgery so i wouldnt think ther is anything to radiate but like i said..i dont know. I thought i recalled that radiation would not be and chemo would be a treatment plan even before surgery...time will tell i dont remember anymore i swear. Im just going off what i recall being mentioned before surgery and after for my follow up- i dont see the oncologist for awhile yet

    thanks though
    and cute picture..woody wood pecker did make me laugh a lot back in the day

    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.