2 different types of breast cancer
Comments
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Dear Susan,
I am so sorry for your diagnosis. This board is a wealth of information and love. Read some different topics, post your questions, and most importantly know this board is here for you. I remember that my mind was racing after I was first diagnosed, the best advice I received after that diagnosis came from a survivor....just breathe.
Inhale, exhale.0 -
This is a great board for learning
Dear Susan,
You have come to the right place for knowledge. May I also suggest that you purchase Dr. Susan Love's Breast Book - 5th Edition. It is a bible for women with breast cancer and will explain many , many, many things and help you understand what you have, your test reports, etc. You can purchase it on line - Amazon or book stores.
Lots of Hugs,
Janelle0 -
Thanks for the advice...I amDifferent Ballgame said:This is a great board for learning
Dear Susan,
You have come to the right place for knowledge. May I also suggest that you purchase Dr. Susan Love's Breast Book - 5th Edition. It is a bible for women with breast cancer and will explain many , many, many things and help you understand what you have, your test reports, etc. You can purchase it on line - Amazon or book stores.
Lots of Hugs,
Janelle
Thanks for the advice...I am just so scared to read too much, I worry about everything and my surgeon told me that they find re-occurrence is higher in people like me (who worry too much), now I worry about worrying! I am 49 and dealing with 3 teenager/young adult children and handling affairs for aged parent, running a business (no employees-just me) & I was already dealing with a kidney disorder and only have the function of one kidney, so I never thought I would have another serious illness. Sought some counseling through my local hospital and the counseler wants to keep discussing my childhood & give me a teddy bear! I am going downhill fast0 -
Hi Susan,Susan2011 said:Thanks for the advice...I am
Thanks for the advice...I am just so scared to read too much, I worry about everything and my surgeon told me that they find re-occurrence is higher in people like me (who worry too much), now I worry about worrying! I am 49 and dealing with 3 teenager/young adult children and handling affairs for aged parent, running a business (no employees-just me) & I was already dealing with a kidney disorder and only have the function of one kidney, so I never thought I would have another serious illness. Sought some counseling through my local hospital and the counseler wants to keep discussing my childhood & give me a teddy bear! I am going downhill fast
I'm so sorry for
Hi Susan,
I'm so sorry for your diagnosis but you have come to the right place for support and information. I found this site the night before my Dr. appt to get my biopsy results & I too didn't understand all the medical terms. Of course now, 7 months post diagnosis, I consider myself an expert on the subject! I have 2 small children at home (9 and 2....yes, a 2 yr old...wears me out more than the chemo did) and my husband is self employed (i dont work outside of the home), so i can completely relate to you!!
I read anything i could get my hands on at the beginning of my cancer journey. Not the best idea, ESPECIALLY on the internet -there's so much false information, heresay, and plain crap out there. Like someone else said, read through the posts on here, start new posts when you have questions, we're a pretty awesome group & can help you
I have read alot of books on breast cancer too - i've literally checked out EVERY book on the subject at my local library! But, some of those were full of crap, too. If you haven't already, check out Dr. Susan Love's "Breast Book" (i think that's the full title!) - she has a really informative website also (of course right now the web address escapes me but you can google her & find it), and Breastcancer.org is really helpful and informative, as well as all the information here on the American Cancer Society. But, with all the resources, I have found the most helpful advice and information has been right here on these message boards. Alot of us are on facebook also, its a little easier to get to know each other on there i think, if you're also on there look me up - Heather Kaylor Grontkowski. We have a group on there also where we can post topics.
Best of luck to you & remember we're here for you!
*hugs*
Heather0 -
Do not throw the towel in
Do not throw the towel in yet! When I was first diagnosed, I was only 33 and had Stage 3A (large IDC with 4 nodes). That was 24 years ago! I have had Stage 4 for 2 yrs now and plan on going another 24 yrs at least. Find the best minds in oncology and then do what they say and fight, fight, fight. That is what has worked for me. You are in my prayers.0 -
Thank you from the newbie,CypressCynthia said:Do not throw the towel in
Do not throw the towel in yet! When I was first diagnosed, I was only 33 and had Stage 3A (large IDC with 4 nodes). That was 24 years ago! I have had Stage 4 for 2 yrs now and plan on going another 24 yrs at least. Find the best minds in oncology and then do what they say and fight, fight, fight. That is what has worked for me. You are in my prayers.
Thank you from the newbie, no offense, but this is not a group I ever wanted to join (I am sure no one did). I am reading through some of this stuff and amazed at how everyone seems so well 'put together' & knowledgeable. I do not envision myself getting to that point. I go to the dr's appts. and I seem to be the youngest one there & get even more bitter. When I hear of someone young with this, it seems they had a family history and therefore maybe better prepared for this as a family member is able to help them through it. You see I can't even seem to type the "c" word. I am putting off getting in the shower right now because yesterday I just cried & cried in the shower as my hair was running down the back of my legs (today looks like it is going to be another bad one-I have 1/2 of my hair left & don't want to even leave the house to get it cut, etc)0 -
Having no family history is
Having no family history is more common than you might think. I never thought that
I'd get cancer - there has been no cancer of any type in at least 4 generations on both sides of my family.
I'm IBC (Inflammatory Breast Cancer), very aggressive type with a 25% to 45% (depending on the report/study) chance of surviving 5 years. Knowing that only makes me enjoy each day I'm given more. I'm currently riding NED (No Evidence of Disease); most say they dance with NED but I'm much better as a horse rider than dancing so choose to 'ride' instead of 'dance') I have been fortunate in all the Drs I have from my PA who had me in for Mammo/Sono/Biopsy withing 2 hrs of seeing her to the Radiologist who did the biopsies, to the Surgeon I saw the next day to the Rads Dr I saw the next day to Chemo Dr I saw the following day. Yes there have been some times that were worse than expected - but I made it through all of them and am 'stronger' today than before in so many ways.
My thought would be that you need to take the step out of the fearful darkness of ignorance/lack of knowledge into the sunshine/light. Fear and darkness only breeds fear and darkness. The light of Knowldge is so much better than the fear when not knowing. With knowledge/study, you will be better equipt to work with your Drs for the journey you are on.
I was on line as soon as I got home from the biopsies looking for info - I was told by both my PA and the Radiologist that they were both 'sure' it was IBC but he would call me in the morning with the path - he did about 8 and said that it was. Do not believe everything you find on the intrnet - not all is factual. But read/research and then ask your Drs.
We are all each unique - but I firmly believe that the best way to attack this Monster is of course using all medical care that is available but also with knowledge.
May God bless you and that you find at least some peace on this journey.
Susan0 -
Yes...I was naïve about theRague said:Having no family history is
Having no family history is more common than you might think. I never thought that
I'd get cancer - there has been no cancer of any type in at least 4 generations on both sides of my family.
I'm IBC (Inflammatory Breast Cancer), very aggressive type with a 25% to 45% (depending on the report/study) chance of surviving 5 years. Knowing that only makes me enjoy each day I'm given more. I'm currently riding NED (No Evidence of Disease); most say they dance with NED but I'm much better as a horse rider than dancing so choose to 'ride' instead of 'dance') I have been fortunate in all the Drs I have from my PA who had me in for Mammo/Sono/Biopsy withing 2 hrs of seeing her to the Radiologist who did the biopsies, to the Surgeon I saw the next day to the Rads Dr I saw the next day to Chemo Dr I saw the following day. Yes there have been some times that were worse than expected - but I made it through all of them and am 'stronger' today than before in so many ways.
My thought would be that you need to take the step out of the fearful darkness of ignorance/lack of knowledge into the sunshine/light. Fear and darkness only breeds fear and darkness. The light of Knowldge is so much better than the fear when not knowing. With knowledge/study, you will be better equipt to work with your Drs for the journey you are on.
I was on line as soon as I got home from the biopsies looking for info - I was told by both my PA and the Radiologist that they were both 'sure' it was IBC but he would call me in the morning with the path - he did about 8 and said that it was. Do not believe everything you find on the intrnet - not all is factual. But read/research and then ask your Drs.
We are all each unique - but I firmly believe that the best way to attack this Monster is of course using all medical care that is available but also with knowledge.
May God bless you and that you find at least some peace on this journey.
Susan
Yes...I was naïve about the family history, I am 49 and had only been for 1 mammogram at age 38, when my GYN said she felt something & that I should not skip it this year, I went right in & then the nightmare began. I like to hear the long term survival stories, but don't know if they apply to me, if I only had the one ductal that I have, it would be o.k., but having the other kind (lobular-high risk) in the other breast which is a worse type, has me thinking I have to overcome the odds of the 2.0 -
Yes...I was naïve about theRague said:Having no family history is
Having no family history is more common than you might think. I never thought that
I'd get cancer - there has been no cancer of any type in at least 4 generations on both sides of my family.
I'm IBC (Inflammatory Breast Cancer), very aggressive type with a 25% to 45% (depending on the report/study) chance of surviving 5 years. Knowing that only makes me enjoy each day I'm given more. I'm currently riding NED (No Evidence of Disease); most say they dance with NED but I'm much better as a horse rider than dancing so choose to 'ride' instead of 'dance') I have been fortunate in all the Drs I have from my PA who had me in for Mammo/Sono/Biopsy withing 2 hrs of seeing her to the Radiologist who did the biopsies, to the Surgeon I saw the next day to the Rads Dr I saw the next day to Chemo Dr I saw the following day. Yes there have been some times that were worse than expected - but I made it through all of them and am 'stronger' today than before in so many ways.
My thought would be that you need to take the step out of the fearful darkness of ignorance/lack of knowledge into the sunshine/light. Fear and darkness only breeds fear and darkness. The light of Knowldge is so much better than the fear when not knowing. With knowledge/study, you will be better equipt to work with your Drs for the journey you are on.
I was on line as soon as I got home from the biopsies looking for info - I was told by both my PA and the Radiologist that they were both 'sure' it was IBC but he would call me in the morning with the path - he did about 8 and said that it was. Do not believe everything you find on the intrnet - not all is factual. But read/research and then ask your Drs.
We are all each unique - but I firmly believe that the best way to attack this Monster is of course using all medical care that is available but also with knowledge.
May God bless you and that you find at least some peace on this journey.
Susan
Yes...I was naïve about the family history, I am 49 and had only been for 1 mammogram at age 38, when my GYN said she felt something & that I should not skip it this year, I went right in & then the nightmare began. I like to hear the long term survival stories, but don't know if they apply to me, if I only had the one ductal that I have, it would be o.k., but having the other kind (lobular-high risk) in the other breast which is a worse type, has me thinking I have to overcome the odds of the 2.0 -
Yes...I was naïve about theRague said:Having no family history is
Having no family history is more common than you might think. I never thought that
I'd get cancer - there has been no cancer of any type in at least 4 generations on both sides of my family.
I'm IBC (Inflammatory Breast Cancer), very aggressive type with a 25% to 45% (depending on the report/study) chance of surviving 5 years. Knowing that only makes me enjoy each day I'm given more. I'm currently riding NED (No Evidence of Disease); most say they dance with NED but I'm much better as a horse rider than dancing so choose to 'ride' instead of 'dance') I have been fortunate in all the Drs I have from my PA who had me in for Mammo/Sono/Biopsy withing 2 hrs of seeing her to the Radiologist who did the biopsies, to the Surgeon I saw the next day to the Rads Dr I saw the next day to Chemo Dr I saw the following day. Yes there have been some times that were worse than expected - but I made it through all of them and am 'stronger' today than before in so many ways.
My thought would be that you need to take the step out of the fearful darkness of ignorance/lack of knowledge into the sunshine/light. Fear and darkness only breeds fear and darkness. The light of Knowldge is so much better than the fear when not knowing. With knowledge/study, you will be better equipt to work with your Drs for the journey you are on.
I was on line as soon as I got home from the biopsies looking for info - I was told by both my PA and the Radiologist that they were both 'sure' it was IBC but he would call me in the morning with the path - he did about 8 and said that it was. Do not believe everything you find on the intrnet - not all is factual. But read/research and then ask your Drs.
We are all each unique - but I firmly believe that the best way to attack this Monster is of course using all medical care that is available but also with knowledge.
May God bless you and that you find at least some peace on this journey.
Susan
Yes...I was naïve about the family history, I am 49 and had only been for 1 mammogram at age 38, when my GYN said she felt something & that I should not skip it this year, I went right in & then the nightmare began. I like to hear the long term survival stories, but don't know if they apply to me, if I only had the one ductal that I have, it would be o.k., but having the other kind (lobular-high risk) in the other breast which is a worse type, has me thinking I have to overcome the odds of the 2.0 -
I didn't think about everSusan2011 said:Yes...I was naïve about the
Yes...I was naïve about the family history, I am 49 and had only been for 1 mammogram at age 38, when my GYN said she felt something & that I should not skip it this year, I went right in & then the nightmare began. I like to hear the long term survival stories, but don't know if they apply to me, if I only had the one ductal that I have, it would be o.k., but having the other kind (lobular-high risk) in the other breast which is a worse type, has me thinking I have to overcome the odds of the 2.
I didn't think about ever getting breast cancer either - i'm 35 and have NO family history at all. But it happened and then in the strangest twist of events, my 60 yr old mom was ALSO diagnosed with breast cancer 2 months AFTER me!! She also had 2 types in her breast, IDC as well as areas of DCIS (ductal carcinoma in-situ, some doctors refer to it as pre-cancerous cells i think).
I'm sorry you're dealing with the hair loss nightmare -and it really is. For me losing my hair was harder to deal with than losing my breasts. My hair was almost waist length when I was diagnosed, and I got my hair cut progressively shorter 3 times before it started falling out - when it got to where it was falling out in clumps & was almost halfway gone, i had my husband come home from work and shave it off. I know that it will grow back, and it's only temporary, but it IS hard to deal with. Allow yourself to cry about it. You'll feel better after a good cry. Just don't let the pain take over.
What kind of chemo are you having, and how many?
*hugs*
Heather0 -
Hi Susan,Susan2011 said:Yes...I was naïve about the
Yes...I was naïve about the family history, I am 49 and had only been for 1 mammogram at age 38, when my GYN said she felt something & that I should not skip it this year, I went right in & then the nightmare began. I like to hear the long term survival stories, but don't know if they apply to me, if I only had the one ductal that I have, it would be o.k., but having the other kind (lobular-high risk) in the other breast which is a worse type, has me thinking I have to overcome the odds of the 2.
You truly have a
Hi Susan,
You truly have a lot on your plate. I'm 48 with two kids, 9 and 14. So I understand how much work that is. But I'm on leave from work, and my parents are still caring for themselves entirely. My diagnosis is triple negative Inflammatory Breast Cancer (I have a hard time with the c word too!). That means I have limited treatment options, and a high risk of recurrence and/or mets to other areas of my body. So I also understand the fear.
Based on all that here are my thoughts...fire the counselor. It sounds like you're not getting what you need and it's just taking up time. Use the time you gain to find another counselor or support group that will better meet your needs...can someone else help with your mom's needs? maybe a friend, family member, paid service, church member, your kids?...try not to think about other people's survival stories. THIS IS YOUR SURVIVAL STORY! think about what will be on today's page, what will the chapter be about right now.
Finally, keep coming here. You'll get care, support, advice, hugs, and new friends. I can't tell you how much the people here have helped me.
Hugs,
Linda0 -
I am getting Taxotere &Heatherbelle said:I didn't think about ever
I didn't think about ever getting breast cancer either - i'm 35 and have NO family history at all. But it happened and then in the strangest twist of events, my 60 yr old mom was ALSO diagnosed with breast cancer 2 months AFTER me!! She also had 2 types in her breast, IDC as well as areas of DCIS (ductal carcinoma in-situ, some doctors refer to it as pre-cancerous cells i think).
I'm sorry you're dealing with the hair loss nightmare -and it really is. For me losing my hair was harder to deal with than losing my breasts. My hair was almost waist length when I was diagnosed, and I got my hair cut progressively shorter 3 times before it started falling out - when it got to where it was falling out in clumps & was almost halfway gone, i had my husband come home from work and shave it off. I know that it will grow back, and it's only temporary, but it IS hard to deal with. Allow yourself to cry about it. You'll feel better after a good cry. Just don't let the pain take over.
What kind of chemo are you having, and how many?
*hugs*
Heather
I am getting Taxotere & Cytoxan together every 3 weeks, I have only had one treatment and my blood pressure went up so high they stopped the IV and asked if I wanted to go to the ER because they were, needless to say I am extremely nervous about my second one this Tues. My kidneys are compromised from years & years of a kidney stone disorder & damage and the oncologist doesn't seem interested in my fears about that, my urologist just says just drink a lot & good luck. The bad symptoms hit over the MLK weekend mainly from the Neulasta shot they think, so they are giving me 2 shots this time (seperated by a day) of something different & now he tells me I could have taken Claratin to relieve some of the pain.0 -
It does help to hear fromGabe N Abby Mom said:Hi Susan,
You truly have a
Hi Susan,
You truly have a lot on your plate. I'm 48 with two kids, 9 and 14. So I understand how much work that is. But I'm on leave from work, and my parents are still caring for themselves entirely. My diagnosis is triple negative Inflammatory Breast Cancer (I have a hard time with the c word too!). That means I have limited treatment options, and a high risk of recurrence and/or mets to other areas of my body. So I also understand the fear.
Based on all that here are my thoughts...fire the counselor. It sounds like you're not getting what you need and it's just taking up time. Use the time you gain to find another counselor or support group that will better meet your needs...can someone else help with your mom's needs? maybe a friend, family member, paid service, church member, your kids?...try not to think about other people's survival stories. THIS IS YOUR SURVIVAL STORY! think about what will be on today's page, what will the chapter be about right now.
Finally, keep coming here. You'll get care, support, advice, hugs, and new friends. I can't tell you how much the people here have helped me.
Hugs,
Linda
It does help to hear from other women my age, your kids are a lot younger than mine so that must be difficult. My son is 17 and I have 2 daughters 19 & 22, I am afraid that they are handling it rather odd & they don't want to talk about it at all. As far as the counselor, he is free through the hospital (I guess you get what you pay for) for 4 sessions and I only have a few more with him anyway, he is referring me to someone else, I just thought he could put me in touch with local support groups, help, etc., but there has been no mention of that? My mom does get some assistance through Hospice, but because of her dementia & problems I have had to move her 4 times in the last year.0 -
Hi Susan. I'm so sorry youGabe N Abby Mom said:Hi Susan,
You truly have a
Hi Susan,
You truly have a lot on your plate. I'm 48 with two kids, 9 and 14. So I understand how much work that is. But I'm on leave from work, and my parents are still caring for themselves entirely. My diagnosis is triple negative Inflammatory Breast Cancer (I have a hard time with the c word too!). That means I have limited treatment options, and a high risk of recurrence and/or mets to other areas of my body. So I also understand the fear.
Based on all that here are my thoughts...fire the counselor. It sounds like you're not getting what you need and it's just taking up time. Use the time you gain to find another counselor or support group that will better meet your needs...can someone else help with your mom's needs? maybe a friend, family member, paid service, church member, your kids?...try not to think about other people's survival stories. THIS IS YOUR SURVIVAL STORY! think about what will be on today's page, what will the chapter be about right now.
Finally, keep coming here. You'll get care, support, advice, hugs, and new friends. I can't tell you how much the people here have helped me.
Hugs,
Linda
Hi Susan. I'm so sorry you have to be here but glad you came. I know your thoughts must be running in a million different directions. I was diagnosed a year ago with IDC and also was treated with T/C. The neulasta shot is what made me feel bad for a few days after treatment. You do have a lot on your plate and you are a lot younger than I am but I know you can do this. It is not easy or pleasant, but as Linda said this is your survival story. We are all here for you and you will be amazed at how many people will come forth with support and answers to all questions, big or small. Warmest thoughts coming your way.0 -
were you switched to thisGayleMc said:Hi Susan. I'm so sorry you
Hi Susan. I'm so sorry you have to be here but glad you came. I know your thoughts must be running in a million different directions. I was diagnosed a year ago with IDC and also was treated with T/C. The neulasta shot is what made me feel bad for a few days after treatment. You do have a lot on your plate and you are a lot younger than I am but I know you can do this. It is not easy or pleasant, but as Linda said this is your survival story. We are all here for you and you will be amazed at how many people will come forth with support and answers to all questions, big or small. Warmest thoughts coming your way.
were you switched to this other 2 part shot? and did you do better on that?0 -
Good Lord, I was just 'off'GayleMc said:No, I wasn't offered that.
No, I wasn't offered that. It makes sense though. Hope it helps.
Good Lord, I was just 'off' reading some other posts and now am concerned about radiation, one women said it damages the heart muscle if done on the left side & I need it on both sides and now I have to watch eating/drinking dairy also? (onc only told me to watch red meat consumption & get more physical activity)...so confused with all of this info!0 -
The most important thing toSusan2011 said:Good Lord, I was just 'off'
Good Lord, I was just 'off' reading some other posts and now am concerned about radiation, one women said it damages the heart muscle if done on the left side & I need it on both sides and now I have to watch eating/drinking dairy also? (onc only told me to watch red meat consumption & get more physical activity)...so confused with all of this info!
The most important thing to remember is everyone is different. I know it's hard, but wait until you talk to a radiation oncologist and get the information that is right for you. I was given no dietary advice, but certain foods bothered me more during chemo than they normally would, and some always bothered me. You will be confused as there are a million things that are coming at you. I don't mean to sound like I don't understand your fears. I was Terrified with each new step, I just wish I could help you to feel better. The beginning is a very uncertain and scary time. Please know how much we will all be pulling for you and take care of you. Hugs to you, Gayle0 -
Cynthia is right. KeepCypressCynthia said:Do not throw the towel in
Do not throw the towel in yet! When I was first diagnosed, I was only 33 and had Stage 3A (large IDC with 4 nodes). That was 24 years ago! I have had Stage 4 for 2 yrs now and plan on going another 24 yrs at least. Find the best minds in oncology and then do what they say and fight, fight, fight. That is what has worked for me. You are in my prayers.
Cynthia is right. Keep fighting and don't give up!
Praying for you,
Diane0
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