Help - SOOOO SCARED!
I am in a real panic because I, like most people, really struggled to come to terms with having a mastectomy and only managed to come through with the thought that once the surgery was over I could start to get my life back on track; I'd just been made redundant from my job before my diagnosis. I'm really worried about coping with chemotherapy and radiotherapy but, also if I can trust my medical team to get it right, as not only did they diagnose me incorrectly I've now got internal stiches (which should dissolve) poking through my skin as they weren't trimmed down!!
How do I know that I'm getting the right strength chemo'? Should I be asking for a double mastectomy? My Doctor says 'no' but I will have the constant worry that the cancer will appear on the other side. I'm so fed up of worrying about this and I'm only half way through my treatment. How do you all cope????
Comments
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Breath Sister Breath
WOW ... I am frustrated just reading this. I am so sorry you have to ask so many questions. My first thought is "SECOND OPINION". I can't imagine having to go through this with so much uncertainty. You shouldn't feel that your doctors don't know what they are doing. IMHO, someone dropped the ball.
Has the chemo been scheduled? Were you told which regimen you will be offered?
Seriously, a second opinion should help you make a smart, qualified decision. Get ALL the reports. Most importantly, get the doctors notes. You will be amazed at what is said in these reports that are NOT said to you. You can get these reports by calling the office and asking for the transcriptions. I cannot tell you what an eye opener these docs notes were to me.
I did not go through chemo (I refused it...but I also asked for the Oncotype test which confirmed I would not benefit from chemo...it was offered before this test. Talk about having an instinct!) but there are many on this board who have and I am sure their advice will help you immensely.
Please just take a breath. Get that 2nd opinion STAT. Do not worry what your current doctor may say. I fired all of my so called experts about 2 months ago (I was diagnosed with stage IIa, grade 3, ER/PR+, Her2- in August 2011). I surrounded myself with doctors that are caring and understanding AND know their jobs. By this I mean, Sloan Kettering where I have a thoracic surgeon lined up! I live in NJ and have an oncologist at the largest cancer institute in the state that has the best reputation. My doctor is also a teaching doctor. I kinda love that! You know what this did for me? It empowered me. I feel I took control of my care/life. THAT, my dear, is the best thing anyone can do to help themselves.
Sending love and prayers to you ....
xoxo
Mary0 -
Sorry
So sorry you have to go through this but you are at the right board for help and advice. I was dx with triple negative bc in my right breast in Nov 2011. I received chemo for 5 months and had a bi lateral (double) mastectomy ( my choice)with immediate reconstruction. Well unfortunately at the end of my expander time shortly before exchange surgery I developed a infection and had to have my expanders removed and my recon is now on hold for quite awhilw. However through all of it, I never questioned any of my docs. If you are uncomfortable in any way and do not feel like you are getting the treatment you need, get another doc! This journey is way to hard as it is, but not being confident in your treatment is more stress than you need!. I urge you to have a heart to heart with your docs and if you still feel that there is concern, go find the right doc.
Good luck to you!
{{{Hugs}}}
Sandy0 -
SO RIGHTMsGebby said:Breath Sister Breath
WOW ... I am frustrated just reading this. I am so sorry you have to ask so many questions. My first thought is "SECOND OPINION". I can't imagine having to go through this with so much uncertainty. You shouldn't feel that your doctors don't know what they are doing. IMHO, someone dropped the ball.
Has the chemo been scheduled? Were you told which regimen you will be offered?
Seriously, a second opinion should help you make a smart, qualified decision. Get ALL the reports. Most importantly, get the doctors notes. You will be amazed at what is said in these reports that are NOT said to you. You can get these reports by calling the office and asking for the transcriptions. I cannot tell you what an eye opener these docs notes were to me.
I did not go through chemo (I refused it...but I also asked for the Oncotype test which confirmed I would not benefit from chemo...it was offered before this test. Talk about having an instinct!) but there are many on this board who have and I am sure their advice will help you immensely.
Please just take a breath. Get that 2nd opinion STAT. Do not worry what your current doctor may say. I fired all of my so called experts about 2 months ago (I was diagnosed with stage IIa, grade 3, ER/PR+, Her2- in August 2011). I surrounded myself with doctors that are caring and understanding AND know their jobs. By this I mean, Sloan Kettering where I have a thoracic surgeon lined up! I live in NJ and have an oncologist at the largest cancer institute in the state that has the best reputation. My doctor is also a teaching doctor. I kinda love that! You know what this did for me? It empowered me. I feel I took control of my care/life. THAT, my dear, is the best thing anyone can do to help themselves.
Sending love and prayers to you ....
xoxo
Mary
Thanks Mary. Everything you say makes total sense.
I live in the UK so my treatment is NHS (paid for by national insurance contributions/non-private)and when I initially tried to get a second opinion (before surgery) it delayed everything by over a month and seemed to irritate the medics already treating me. Since it was taking so long to get that second opinion/referral to a specialist hospital in London, I went back to my original Doctor as I could literally feel the lump growing. Even at this point I was advised that surgery wasn't urgent and could probably wait until the Autumn!
I've got an appointment with the Oncology team next Fri when they should be advising the type of chemo' 'cocktail' they're going to use, but after your post I think I'll try to get hold of those notes/reports before this appointment.
You are so right, I need to empower myself with knowledge and know I'm going to receive the right treatment this time.
Thanks so much.
God bless and love to you.
xxx0 -
Bless yousalls41 said:Sorry
So sorry you have to go through this but you are at the right board for help and advice. I was dx with triple negative bc in my right breast in Nov 2011. I received chemo for 5 months and had a bi lateral (double) mastectomy ( my choice)with immediate reconstruction. Well unfortunately at the end of my expander time shortly before exchange surgery I developed a infection and had to have my expanders removed and my recon is now on hold for quite awhilw. However through all of it, I never questioned any of my docs. If you are uncomfortable in any way and do not feel like you are getting the treatment you need, get another doc! This journey is way to hard as it is, but not being confident in your treatment is more stress than you need!. I urge you to have a heart to heart with your docs and if you still feel that there is concern, go find the right doc.
Good luck to you!
{{{Hugs}}}
Sandy
Hi Sandy,
Thanks for your post. You are spot on, I need to get more info' and be able to trust that the treatment is the right way to go. Sounds like you're having a rare old time too! I didn't realise expanders could get infected, this wasn't explained to me, and it sounds awful. I was told mine could stay in indefinitely, but that I'd probably want it changed for a better shape and size. I'll definitely have to have it changed now after the radiotherapy as it will shrink/distort, but naively I didn't even think of infection.
Sending you love and best wishes.
Eliza xx0 -
so sorry..you are going
so sorry..you are going through this...
Denise0 -
People moan about theESDC said:SO RIGHT
Thanks Mary. Everything you say makes total sense.
I live in the UK so my treatment is NHS (paid for by national insurance contributions/non-private)and when I initially tried to get a second opinion (before surgery) it delayed everything by over a month and seemed to irritate the medics already treating me. Since it was taking so long to get that second opinion/referral to a specialist hospital in London, I went back to my original Doctor as I could literally feel the lump growing. Even at this point I was advised that surgery wasn't urgent and could probably wait until the Autumn!
I've got an appointment with the Oncology team next Fri when they should be advising the type of chemo' 'cocktail' they're going to use, but after your post I think I'll try to get hold of those notes/reports before this appointment.
You are so right, I need to empower myself with knowledge and know I'm going to receive the right treatment this time.
Thanks so much.
God bless and love to you.
xxx
People moan about the medical system we have in the States. Hearing your situation makes me grateful for what I have! I do hope you don't have any problems getting your reports. I should also mention that getting your hands on the films is helpful too. That way, when you do get that 2nd opinion appointment you will have everything you need to bring the doctor up to speed.
Don't give up on that 2nd opinion. Keep going after it. You will get an appointment no matter what. Even if you start treatments before said appointment, you will at least get more information or will find out that you are receiving the right treatment. You might even like this new team better and decide to move on.
Good Luck Sister.
Mary0 -
Thanksdisneyfan2008 said:so sorry..you are going
so sorry..you are going through this...
Denise
Hi Denise, Thanks for taking the time to post to me. Everyone on here is so lovely and it's a real help to get some advice and support for those who are going/have gone through the same thing. It's certainly helped with my panic for today!
Love and best wishes.
Eliza0 -
Hang in There!
Keep a positive attitude - you are strong and will get through this!
I was diagnosed with invasive ductal carcinoma on July 26, 2012. My tumor was small (1cm), but I'm triple negative and had a grade 3, poorly differentiated cancer. I've had a lumpectomy, localized radiation with a SAVI catheter and now am facing chemo therapy for 4 or 5 months. Like you, I don't know what to expect from the chemo.
But you just hang in there and I'm hopeful your doctors will get their acts together so you can begin to trust them and get everything done and get back to your life.
I'll keep you in my thoughts.0 -
You'll get through this!AppraiserGirl said:Hang in There!
Keep a positive attitude - you are strong and will get through this!
I was diagnosed with invasive ductal carcinoma on July 26, 2012. My tumor was small (1cm), but I'm triple negative and had a grade 3, poorly differentiated cancer. I've had a lumpectomy, localized radiation with a SAVI catheter and now am facing chemo therapy for 4 or 5 months. Like you, I don't know what to expect from the chemo.
But you just hang in there and I'm hopeful your doctors will get their acts together so you can begin to trust them and get everything done and get back to your life.
I'll keep you in my thoughts.
So glad you found this site early! Everyone here will help you through this, the pink warriors are a great bunch!
I agree with getting a second opinion as it made a big difference for me. Keep gathering information and posting and know that your in thoughts and prayers.
Joyce0 -
Radio' before chemo'?AppraiserGirl said:Hang in There!
Keep a positive attitude - you are strong and will get through this!
I was diagnosed with invasive ductal carcinoma on July 26, 2012. My tumor was small (1cm), but I'm triple negative and had a grade 3, poorly differentiated cancer. I've had a lumpectomy, localized radiation with a SAVI catheter and now am facing chemo therapy for 4 or 5 months. Like you, I don't know what to expect from the chemo.
But you just hang in there and I'm hopeful your doctors will get their acts together so you can begin to trust them and get everything done and get back to your life.
I'll keep you in my thoughts.
Thanks AppraiserGirl. Hope you don't mind me asking, and just ignore my post if you do, but is it regular in states to have radiation before chemo'? I've been told that here in the UK they always give chemo' first. I have to be honest and didn't question why we do it this way round but to me it did seem to make sense to do the radiation first. I should learn that just because I'm not medically trained it doesn't mean that my questions are stupid.
Best of luck to you.
Eliza0 -
Big HugPinky68 said:You'll get through this!
So glad you found this site early! Everyone here will help you through this, the pink warriors are a great bunch!
I agree with getting a second opinion as it made a big difference for me. Keep gathering information and posting and know that your in thoughts and prayers.
Joyce
Thanks Joyce. I'm finding this site the best therapy and an amazing source of info'. I'm proud to join the pink warriors!
Eliza xx0 -
Coping,
Hi, I am sorry to hear that you are having problems with the system. I was lucky in many ways, one was trusting my healthcare team. I have been passed around a group of doctors as they performed their work. It seems like they don't care, but they do. Cancer is very mysterious, but thank goodness there are so many of us pink sisters out there to help you through this. I don't know about chemo, but I was diagnosed with DCIS, no lump, just had an irregular mammogram. The surgeon really did not know what was going on in there until they performed the pathology report. Some cancers, the DCIS, is simply too microscopic to see. It's great they catch it early, but if it is too early, that gives us a whole lifetime to be worried that it does not reoccur. In my case, I got the bilateral work done because I am young, and did not want the worry. However, it has been very difficult to heal and get back to work. Each treatment has its tradeoffs, you might be able to handle your job while under treatment. See how it goes. Your co-workers may really help you as well. There are so many factors. By the way, they analysed the tissues, and no, it was not in my other breast. Every situation is different, it is your job to coordinate it up with your lifestyle and accumulate as much knowledge as you can, at your own pace. Ask questions, and give yourself credit for doing alot of the battle. Take care.0 -
...hope4thebest said:Coping,
Hi, I am sorry to hear that you are having problems with the system. I was lucky in many ways, one was trusting my healthcare team. I have been passed around a group of doctors as they performed their work. It seems like they don't care, but they do. Cancer is very mysterious, but thank goodness there are so many of us pink sisters out there to help you through this. I don't know about chemo, but I was diagnosed with DCIS, no lump, just had an irregular mammogram. The surgeon really did not know what was going on in there until they performed the pathology report. Some cancers, the DCIS, is simply too microscopic to see. It's great they catch it early, but if it is too early, that gives us a whole lifetime to be worried that it does not reoccur. In my case, I got the bilateral work done because I am young, and did not want the worry. However, it has been very difficult to heal and get back to work. Each treatment has its tradeoffs, you might be able to handle your job while under treatment. See how it goes. Your co-workers may really help you as well. There are so many factors. By the way, they analysed the tissues, and no, it was not in my other breast. Every situation is different, it is your job to coordinate it up with your lifestyle and accumulate as much knowledge as you can, at your own pace. Ask questions, and give yourself credit for doing alot of the battle. Take care.
I had rads after chemo. I have learned there are no stupid questions regardless of my
nonexistent medical background.
I have actually written down all of the things I wanted to ask and just handed over the list to the doctor because it seems I could never manage to ask/remember anything!
Your mileage may vary!
(((Hugs)))0 -
yu need peace so if you cajendrey said:...
I had rads after chemo. I have learned there are no stupid questions regardless of my
nonexistent medical background.
I have actually written down all of the things I wanted to ask and just handed over the list to the doctor because it seems I could never manage to ask/remember anything!
Your mileage may vary!
(((Hugs)))
yu need peace so if you ca get a second opinion you should get it. can you push it through?0 -
THANKScarkris said:yu need peace so if you ca
yu need peace so if you ca get a second opinion you should get it. can you push it through?
Thank you all ladies. I feel totally prepared for my next appointment and I've a nice long list of questions ready for me to take! I'm going to have another try at the second opinion and going to ask my GP (General Practitioner) not to mention this to my current surgeon. I know this is not being totally open but I don't want to end up without any treatment plan at all.
Love to you all
XXXXX0 -
Welcoming you and addingESDC said:Thanks
Hi Denise, Thanks for taking the time to post to me. Everyone on here is so lovely and it's a real help to get some advice and support for those who are going/have gone through the same thing. It's certainly helped with my panic for today!
Love and best wishes.
Eliza
Welcoming you and adding positive thoughts and prayers!
Hugs, Diane0 -
ThanksJoAnn4818 said:I understand
Eliza,
I was diagnosed almost exactly 2 years ago. I had many of the same worries and feelings that you have now. I just wanted to let you know I'll be thinking of you and sending all positive thoughts your way.
God bless and keep you.
JoAnn
Many thanks JoAnn. I feel truly blessed to have found this site and had support from so many lovely people like you. All the love, prayers, and positive thinking has definitely worked and I've found a sense of peace. Your stories too have made me put things into perspective and realize that my fight is so much easier than many of yours; I should be grateful for the gifts I have.
Love and God bless
Eliza xxx0 -
OOPS - Double postdisneyfan2008 said:so sorry..you are going
so sorry..you are going through this...
Denise
Double post0 -
OOPS - Double Postdisneyfan2008 said:so sorry..you are going
so sorry..you are going through this...
Denise
Double post0
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