I just joined the forum today... and I see I am not alone..
I got diagnosed on March 2nd with DCIS. The surgeon has said that I have a few spots in a area size of 4 cm X 3 cm., in my left breast. I had the BRCA1 and 2 testing done since my mother and grandmother both had breast cancer, luckily my tests were negative. Now I don’t have to worry about my kids or grandkids worrying about it being genetic.
I have decided on the bi-lateral mascectomy with reconstruction on both sides. I don’t want to put myself through this emotional roller coaster again.
I am scheduled for surgery on May 18th, but this is still not soon enough.. I can relate to the person who said “ this can’t go fast enough’. I have changed my mind back and forth for the last couple of weeks.. thankfully I haven’t called my surgeon on it .. He will really think I have gone nuts . This is what I meant by the roller coaster affect.
I'm happy to have a place to read everyone's experience and decision making process. It will be good for me to have a place to read about others and hear that I am not alone.
Thanks
Katie
Comments
-
Welcome
Welcome Katie. We are always sorry that there continue to be new people diagnosed with this terrible disease but we will love hearing from you and supporting you in anyway we can.
I have only been on this site for 2 1/2 weeks but I have already been so blessed by the women her. It has been a huge relief to realize that I am not the only one suffering with the mental and emotional aspects of this disease and it's treatments. I always knew about the physical aspects, but had no clue about the mental side.
It REALLY is a roller coaster ride and especailly at the time of diagnosis. There are just so many decisions to be made and they are all life changing decisions too. I know I was totally shocked at how in-emergent (I like to make up my own words) the doctors felt ths situation was and how emergent I felt it was! I thought I would be diagnosed and be rushed into surgery in a matter of days - not weeks.
I think that you will find great support here and I look forward to hearing more of your story!
God bless,
Rita0 -
Welcomeritazimm said:Welcome
Welcome Katie. We are always sorry that there continue to be new people diagnosed with this terrible disease but we will love hearing from you and supporting you in anyway we can.
I have only been on this site for 2 1/2 weeks but I have already been so blessed by the women her. It has been a huge relief to realize that I am not the only one suffering with the mental and emotional aspects of this disease and it's treatments. I always knew about the physical aspects, but had no clue about the mental side.
It REALLY is a roller coaster ride and especailly at the time of diagnosis. There are just so many decisions to be made and they are all life changing decisions too. I know I was totally shocked at how in-emergent (I like to make up my own words) the doctors felt ths situation was and how emergent I felt it was! I thought I would be diagnosed and be rushed into surgery in a matter of days - not weeks.
I think that you will find great support here and I look forward to hearing more of your story!
God bless,
Rita
Hi Katie and welcome to the club no one wants to join. You will be amazed at the love and support on this site. At this point I'm sure you have a million questions ... so feel free to ask. That is one of the most amazing things about this group ... you can ask ANYTHING. There's almost always someone here ... day and night (since many of us never sleep). There are people who are in the same confusing place you are right now and it is always good to vent and express your feelings to people who truly understand what you are going through. There are also many women (and a few men) here who are "ahead" of you in the surgery/treatment area ... and others will be behind you ... and you will be able to answer some of their questions. We are all here to share our experiences, knowledge, support and love and you will be amazed at how soon you will feel like "family."
hugs.
teena0 -
Hi Katie. The old saying,tgf said:Welcome
Hi Katie and welcome to the club no one wants to join. You will be amazed at the love and support on this site. At this point I'm sure you have a million questions ... so feel free to ask. That is one of the most amazing things about this group ... you can ask ANYTHING. There's almost always someone here ... day and night (since many of us never sleep). There are people who are in the same confusing place you are right now and it is always good to vent and express your feelings to people who truly understand what you are going through. There are also many women (and a few men) here who are "ahead" of you in the surgery/treatment area ... and others will be behind you ... and you will be able to answer some of their questions. We are all here to share our experiences, knowledge, support and love and you will be amazed at how soon you will feel like "family."
hugs.
teena
Hi Katie. The old saying, "Knowledge is power, ignorance is bliss", has proven itself to be quite true in these boards. The more knowledge you have regarding your particular diagnosis will assist you in making decision regarding treatment, what to expect during treatment, and how others have coped with the overall experience. Sometimes ignorance is easier, but having knowledge surely puts you in a position of power over fighting this dreaded disease. Most any question you may have you will find someone who has an answer, or at least a suggestion on where to find the answer. Good luck on your journey, and please visit this board any time you have a need to have a friend. We are always here for you.
Hugs,
Judy0 -
good decision
It's your decision, and I mean to be respectful of that, but I want to tell you that I am very happy I had a bilateral mastectomy. The survival rates may be the same, but in my view (respecting that others may have different opinions) why would you want to put yourself thru chemo and all the treatments again if there is something you can do to minimize the chances of this happening. Yes, cancer can come back with a mastectomy, too, but the local recurrence rate is somewhat higher with a lumpectomy.
This is just my two cents.
Good luck in whatever you decide.
Ohilly0 -
Warm welcome, Katie!
Though sorry for the reason...
You will make good friends here, and quickly. There is much for you to gain - consistent, never-wavering support & encouragement, understanding & compassion.
Kind regards, Susan0 -
welcome Katie
I am glad you found us early in your journey. I can't begin to tell you the support and comfort i have received here. We are a amazing group of caring, courageous women. All fighting for the same cause. You can come here to cry, vent, ask questions, and we are always ready for a good laugh!
The waiting game is so very hard, and you will experience many emotions. I understand wanting to get this over as soon as possible. I wanted to get rid of the beast NOW! We can offer our info and our decisions but ultimately it is up to you and the recommendations of your Onc. My advice is just to read up on all your choices and think about what you personally can deal with. We must do all we can to fight ..and conquer!
As for myself I had a mastectomy on the left breast. I am quite a worrier so i asked the Dr. at the last min. before surgery to do a bi-lateral and take the non-cancerous one also. He said it was too late. I guess i wasn't informed enough at that time to know they could do a preventative. hind site is 20-20. my diagnosis was different than you though and i had stage 3a with 6 lymphnodes involved.
You are not alone. and keep us up on your decisions and we will be here with you each step of the way
God Bless
jackie0 -
Welcomrjjj said:welcome Katie
I am glad you found us early in your journey. I can't begin to tell you the support and comfort i have received here. We are a amazing group of caring, courageous women. All fighting for the same cause. You can come here to cry, vent, ask questions, and we are always ready for a good laugh!
The waiting game is so very hard, and you will experience many emotions. I understand wanting to get this over as soon as possible. I wanted to get rid of the beast NOW! We can offer our info and our decisions but ultimately it is up to you and the recommendations of your Onc. My advice is just to read up on all your choices and think about what you personally can deal with. We must do all we can to fight ..and conquer!
As for myself I had a mastectomy on the left breast. I am quite a worrier so i asked the Dr. at the last min. before surgery to do a bi-lateral and take the non-cancerous one also. He said it was too late. I guess i wasn't informed enough at that time to know they could do a preventative. hind site is 20-20. my diagnosis was different than you though and i had stage 3a with 6 lymphnodes involved.
You are not alone. and keep us up on your decisions and we will be here with you each step of the way
God Bless
jackie
Hi Katie:
Like you I depended on this web site for support and information. Don't feel shy to ask anything and one of us will be ready to answer you no matter what. Like you I was diagnosed on Jan 2009 and had a bilateral masectomy on the left breast on 2/28/2009. Had a port put on my right chest - so the chemo drugs can go through this instead of my arm. As you know, you will only have one arm to use for Blood Pressure and Blood works. My right arm is running out of veins since I have small and sensitive veins. I had my 3rd chemo and 13 more to go. Remember, each and everyone of us has a different cocktail of chemo and you really cannot compare from others, also are body reacts differntly. I was diagnosed with state 2a with lymph nodes involvement. The surgeon cleaned out my lymph nodes and only 2 was found to be positive but with blood vessel involvement. I am taking a clinical study with the standard chemo drugs - Avastin is the clinical study and has been used for Colorectal and Lung Cancer and is now on its Phase III for Breast Cancer. Hopefully this will become a standard drug too as this cuts-off blood supply of the cancer cells or tumor.
Please keep us informed about your situation.
Love and Prayers,
Joy0 -
Hi thereJoyD said:Welcom
Hi Katie:
Like you I depended on this web site for support and information. Don't feel shy to ask anything and one of us will be ready to answer you no matter what. Like you I was diagnosed on Jan 2009 and had a bilateral masectomy on the left breast on 2/28/2009. Had a port put on my right chest - so the chemo drugs can go through this instead of my arm. As you know, you will only have one arm to use for Blood Pressure and Blood works. My right arm is running out of veins since I have small and sensitive veins. I had my 3rd chemo and 13 more to go. Remember, each and everyone of us has a different cocktail of chemo and you really cannot compare from others, also are body reacts differntly. I was diagnosed with state 2a with lymph nodes involvement. The surgeon cleaned out my lymph nodes and only 2 was found to be positive but with blood vessel involvement. I am taking a clinical study with the standard chemo drugs - Avastin is the clinical study and has been used for Colorectal and Lung Cancer and is now on its Phase III for Breast Cancer. Hopefully this will become a standard drug too as this cuts-off blood supply of the cancer cells or tumor.
Please keep us informed about your situation.
Love and Prayers,
Joy
Hi Katie,
Welcome. I was diagnosed with DCIS w/invasion 12/8/08. Double mastectomy 2/2/09 with tissue expanders. Stage 1-no lymph node involvement--HER2+--Port put in on 3/2 and have finished first round of chemo therapy on 4/21 and will start second round of three on 5/7.
You will find very supportive women and men and caregivers who will listen and help you get through this.
Hugs,
Margo0 -
Welcome Katie, and sorry you
Welcome Katie, and sorry you too have to be here. I'm glad you found us though and we'll be happy to answer any questions you may post and give you all the cyber hugs and support we can give. Hugs, Lili0 -
Welcome
Hi Katie, welcome to the site. I'm glad you found us and hope to be of help to you. You were diagnosed in early March but not having surgery till middle of May? Is that the mastectomies or reconstruction? I ask only because I am concerned and that just seems like an awful long wait.
You mentioned that your Mom and Grandmother had breast cancer, you tested negative for BRCA 1 & 2 but your breast cancer is not genetic. I would think that your breast cancer IS genetic.
I am the fourth woman in my family to have breast cacner, I tested negative for the BRCA 1 and 2, but my geneticist said that does not mean my cancer is not genetic. She said that not all the gene mutations responsible for breast cancer have been discovered yet. They think there could be more than 100 genes that could play a role. So, she said that when you have multiple family members with the same cancer, then there IS something genetic being passed down, but they just can't identify the particular gene/s responsible. Its just too much of a coincidence to have 3 or more cases in one family.
So my brother will make sure that his daughter starts mammograms early and my cousins will do the same with their daughters. I don't mean to sound all doom and gloom, just that awareness is a good thing and viligence will provide peace of mind. Take care, Eileen0 -
HI..ritazimm said:Welcome
Welcome Katie. We are always sorry that there continue to be new people diagnosed with this terrible disease but we will love hearing from you and supporting you in anyway we can.
I have only been on this site for 2 1/2 weeks but I have already been so blessed by the women her. It has been a huge relief to realize that I am not the only one suffering with the mental and emotional aspects of this disease and it's treatments. I always knew about the physical aspects, but had no clue about the mental side.
It REALLY is a roller coaster ride and especailly at the time of diagnosis. There are just so many decisions to be made and they are all life changing decisions too. I know I was totally shocked at how in-emergent (I like to make up my own words) the doctors felt ths situation was and how emergent I felt it was! I thought I would be diagnosed and be rushed into surgery in a matter of days - not weeks.
I think that you will find great support here and I look forward to hearing more of your story!
God bless,
Rita
Thanks for answering
HI..
Thanks for answering me..
Most days I think the roller coaster is worst than actually having the disease.. My emotions are so back and forth.. some days I just want it over with and other days I just think the heck with it,, let it be..
So far this year.. I buried an aunt in January with throat cancer, a sister in February with lung cancer, my husband was laid off in February, and I was diagnosed with this awful thing.. so either I am really unlucky .. or someone upstairs just wants me to become the strong person I use to be..
I have finally become ok with what is going on.. I have finally made may decisions on the bi-lateral masectomy with reconstruction. but.. I am still really really scared .. I just wish I could have the surgery tomorrow.. to get it over with..
THe surgeon said since we caught it so early, that the timing is good to schedule out like this.. My surgery is set up for May 18th, but, I don't think he was thinking about the emotional part of it.
I am really worried about the 'after' surgery.. I have heard ghost stories about the drain tubes, and the pain that I will be in. The plastic surgeon said I will have a tube for pain but is this going to be enough? and then the scars.. what am I going to look like.?? Is my husband going to be afraid of me?? Is he not going to want to touch me after this? Too many worries, is this normal???
Too many thing to think about...0 -
HiEil4186 said:Welcome
Hi Katie, welcome to the site. I'm glad you found us and hope to be of help to you. You were diagnosed in early March but not having surgery till middle of May? Is that the mastectomies or reconstruction? I ask only because I am concerned and that just seems like an awful long wait.
You mentioned that your Mom and Grandmother had breast cancer, you tested negative for BRCA 1 & 2 but your breast cancer is not genetic. I would think that your breast cancer IS genetic.
I am the fourth woman in my family to have breast cacner, I tested negative for the BRCA 1 and 2, but my geneticist said that does not mean my cancer is not genetic. She said that not all the gene mutations responsible for breast cancer have been discovered yet. They think there could be more than 100 genes that could play a role. So, she said that when you have multiple family members with the same cancer, then there IS something genetic being passed down, but they just can't identify the particular gene/s responsible. Its just too much of a coincidence to have 3 or more cases in one family.
So my brother will make sure that his daughter starts mammograms early and my cousins will do the same with their daughters. I don't mean to sound all doom and gloom, just that awareness is a good thing and viligence will provide peace of mind. Take care, Eileen
The surgeon said since we
Hi
The surgeon said since we caught it so early, that the timing is good to schedule out like this.. My surgery is set up for May 18th, but, I don't think he was thinking about the emotional part of it.
I am really worried about the 'after' surgery.. I have heard ghost stories about the drain tubes, and the pain that I will be in. The plastic surgeon said I will have a tube for pain but is this going to be enough? and then the scars.. what am I going to look like.?? Is my husband going to be afraid of me?? Is he not going to want to touch me after this? Too many worries, is this normal??? I am going with the skin saving and they told me that I will have a scar from one side to the other around the nipple,
I would think that it is genetic also, but they told me that since it cam eback negative that my kids ( 3 girls, one boy ) cannot get tested early. They said that its not considered genetic unless its positive??
The closer it gets to surgery, the more scared I get.. I was told that its a 5-6 hour surgery. and that I will be in the hospital for 1-2 days..
Is this normal?0 -
doublekugiek said:Hi
The surgeon said since we
Hi
The surgeon said since we caught it so early, that the timing is good to schedule out like this.. My surgery is set up for May 18th, but, I don't think he was thinking about the emotional part of it.
I am really worried about the 'after' surgery.. I have heard ghost stories about the drain tubes, and the pain that I will be in. The plastic surgeon said I will have a tube for pain but is this going to be enough? and then the scars.. what am I going to look like.?? Is my husband going to be afraid of me?? Is he not going to want to touch me after this? Too many worries, is this normal??? I am going with the skin saving and they told me that I will have a scar from one side to the other around the nipple,
I would think that it is genetic also, but they told me that since it cam eback negative that my kids ( 3 girls, one boy ) cannot get tested early. They said that its not considered genetic unless its positive??
The closer it gets to surgery, the more scared I get.. I was told that its a 5-6 hour surgery. and that I will be in the hospital for 1-2 days..
Is this normal?
I didn't have any problems with the drain tubes--one was uncomfortable when they took it out--take Tylenol before. I was not in any pain after surgery--uncomfortable where the plastic surgeon cut the pec muscle to put in the tissue expander but where my incisions where there was no pain. I don't know what he meant by a tube for pain.
I can't answer the part about the husband thing.
I was tested for BRCA1 and BRCA2 since breast cancer runs in my family and my test results were negative so I didn't have to worry about my son and his offsprings.
My bilateral mastectomy scars are where the nipple and aureola were taken off and my incisions on each breast are about 3-4 inches and that is it.
I was in the hospital for 2 days. My surgery was about 6 hours.
I hope this answers some of your questions.
Hugs,
Margo0 -
HItommaseena said:double
I didn't have any problems with the drain tubes--one was uncomfortable when they took it out--take Tylenol before. I was not in any pain after surgery--uncomfortable where the plastic surgeon cut the pec muscle to put in the tissue expander but where my incisions where there was no pain. I don't know what he meant by a tube for pain.
I can't answer the part about the husband thing.
I was tested for BRCA1 and BRCA2 since breast cancer runs in my family and my test results were negative so I didn't have to worry about my son and his offsprings.
My bilateral mastectomy scars are where the nipple and aureola were taken off and my incisions on each breast are about 3-4 inches and that is it.
I was in the hospital for 2 days. My surgery was about 6 hours.
I hope this answers some of your questions.
Hugs,
Margo
So all the 'horror'
HI
So all the 'horror' stories .. Maybe I need to stop reading so much into things..
I am really glad to hear that the tubes aren't a problem. and the scars? from what the plastic surgeon 'penciled' in. looked like they are going to make the incision across the front around the nipple and aureola ( saving them ) to the other side.. looked like it was going to basically be from one side to the other. He also said to 'lift' the nipple ( since I am 50, overweight, and have had 5 kids) they would have to remove about an inch of skin, for the breast to no longer 'sag'
The plastic surgeon said that I would have little 'plugs' above my breast with medicine in for pain, so I wouldn't have to take any orally, and that I can remove these myself.
Katie0 -
you'll get through itkugiek said:Hi
The surgeon said since we
Hi
The surgeon said since we caught it so early, that the timing is good to schedule out like this.. My surgery is set up for May 18th, but, I don't think he was thinking about the emotional part of it.
I am really worried about the 'after' surgery.. I have heard ghost stories about the drain tubes, and the pain that I will be in. The plastic surgeon said I will have a tube for pain but is this going to be enough? and then the scars.. what am I going to look like.?? Is my husband going to be afraid of me?? Is he not going to want to touch me after this? Too many worries, is this normal??? I am going with the skin saving and they told me that I will have a scar from one side to the other around the nipple,
I would think that it is genetic also, but they told me that since it cam eback negative that my kids ( 3 girls, one boy ) cannot get tested early. They said that its not considered genetic unless its positive??
The closer it gets to surgery, the more scared I get.. I was told that its a 5-6 hour surgery. and that I will be in the hospital for 1-2 days..
Is this normal?
Everyone probably has a different experience, but I'll tell you mine: I had two separate mastectomies done at different times, one for cancer and the other preventive. With the first mastectomy, I was in a lot of pain for a whole month and slept a lot, but then the pain completely went away and I got my energy back and felt normal (I was tired, but was able to work the whole time and even thru chemo). The second mastectomy was very different: I had no pain at all and it was a piece of cake! I don't know why the two experiences were so different.
Regarding the appearance of your reconstructed breasts, mine look pretty normal but I do have big scars. After awhile you get used to it. I still did not show my husband my breasts (my choice, he doesn't mind seeing it). I hope this is not too personal to tell you, but in intimate moments I cover up the top with something pretty and I feel more comfortable this way. Maybe in time, I will get over it. I also did not look at my reconstructed breasts for months or my bald head from chemo until after chemo was over, so it's probably just me: that was my way of dealing with it.
You'll get through it. We're pulling for you!
Ohilly0 -
HIohilly said:you'll get through it
Everyone probably has a different experience, but I'll tell you mine: I had two separate mastectomies done at different times, one for cancer and the other preventive. With the first mastectomy, I was in a lot of pain for a whole month and slept a lot, but then the pain completely went away and I got my energy back and felt normal (I was tired, but was able to work the whole time and even thru chemo). The second mastectomy was very different: I had no pain at all and it was a piece of cake! I don't know why the two experiences were so different.
Regarding the appearance of your reconstructed breasts, mine look pretty normal but I do have big scars. After awhile you get used to it. I still did not show my husband my breasts (my choice, he doesn't mind seeing it). I hope this is not too personal to tell you, but in intimate moments I cover up the top with something pretty and I feel more comfortable this way. Maybe in time, I will get over it. I also did not look at my reconstructed breasts for months or my bald head from chemo until after chemo was over, so it's probably just me: that was my way of dealing with it.
You'll get through it. We're pulling for you!
Ohilly
Thank you so much for
HI
Thank you so much for sharing with me.. Yes you have answered my questions and eased my fears. Like you said though, every situation is different.. I can only hope for the no pain one. I am sure, almost positive, that my fears will show up again in the next 3 weeks as I wait to get in for the surgery. My days here lately are either up or down, depending on which part of the roller coaster ride I am on that day.
I am sure I will have more questions or feelings to share on days to come..
Thank you again. This is a Great site with Great people.. It is so nice to have someone out there to ask these questions to.
Katie0 -
Hi Katie,
I new to this
Hi Katie,
I new to this board also, but not new to cancer. You will find a wonderful group of very supportive people on this board. I am sorry you are having to go through this. The waiting is one of the worst parts of this disease. You are right, doctors don't think about the wait time and what that can do to us emotionally. That said, you have every right to call and have that date moved up, if that's what you want. I agree with the others that say do your homework on reputable web sites and start writing down questions to take with you to your next appt. You can also ask for a q and a session.
I wish I could tell you when the roller coaster of emotions stops, but I don't have that answer for myself yet and I was diagnosed in Aug. of 2005. When we hear cancer, we sometimes go numb and deaf, so take someone with you to every dr. appt. you have. I hope this time goes quickly for you. Don't forget to deep breath when you are feeling overwhelmed, and use this time to pamper yourself as much as possible. You deserve it.
We will be here for you for whatever you need.
Love and Gentle Hugs,
Donna0 -
Katie...kugiek said:HI
So all the 'horror'
HI
So all the 'horror' stories .. Maybe I need to stop reading so much into things..
I am really glad to hear that the tubes aren't a problem. and the scars? from what the plastic surgeon 'penciled' in. looked like they are going to make the incision across the front around the nipple and aureola ( saving them ) to the other side.. looked like it was going to basically be from one side to the other. He also said to 'lift' the nipple ( since I am 50, overweight, and have had 5 kids) they would have to remove about an inch of skin, for the breast to no longer 'sag'
The plastic surgeon said that I would have little 'plugs' above my breast with medicine in for pain, so I wouldn't have to take any orally, and that I can remove these myself.
Katie
I can speak about the husband thing. It will be an adjustment for him just as it will be for you, but if you managed to create five kids together and bring them up together, the two of you can handle this ordeal too.
I was in charge of doing the drainwork twice a day, and I also inspected Moopy's scar when I performed this task. None of this bothered me in the least. In real life, I have a phobia about keeping things clean, emptying receptacles, and putting things back in their proper places. But if it's put as "Do this and you will get to keep your beautiful and loving wife" it's amazing what even a devout slob like me can accomplish.
Moreover, duties like this proved to be a real bonding experience. Even if I couldn't feel any of Moopy's physical pain, I could help relieve some of her discomfort and this meant an awful lot to me. I'll even provide a caregiver tip: sometimes there will be ropy, goopy stuff in the drainage. First time I saw it I waited until Moopy was elsewhere and called the doctor's office, where I was told something like "Duh, that's what the drains are put in to drain." I'm never too old to learn, I guess.
If your husband would like to talk to a male BC caregiver, I would be happy to be of any assistance possible. Just PM me.
Best,
Joe0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.2K Cancer specific
- 2.8K Anal Cancer
- 440 Bladder Cancer
- 306 Bone Cancers
- 1.6K Brain Cancer
- 28.4K Breast Cancer
- 391 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 666 Leukemia
- 789 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 53 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 532 Sarcoma
- 717 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards