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Help - SOOOO SCARED!

ESDC
Posts: 43
Joined: Sep 2012

I was initially diagnosed with DCIS on 1st June 2012, and told I needed a mastectomy with an immediate strattice reconstruction. My diagnosis was made after I found a lump on my left breast and I had a core biopsy, but the lump I found was not biopsied or scanned. My Doctor said that the lump was most likely DCIS too, and would be removed with the mastectomy anyway. Having had surgery I've been told that 'surprisingly' the lump was grade 3 and over 5.5cm, so I will need chemotherapy and radiotherapy. My Doctor has admitted that, had he known that I had an invasive cancer alongside the DCIS, he would not have performed an immediate reconstruction, as this will be damaged by the radiotherapy.

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????

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

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

ESDC
Posts: 43
Joined: Sep 2012

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

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

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.

Mary

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

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

ESDC
Posts: 43
Joined: Sep 2012

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 xx

survivorbc09
Posts: 4378
Joined: Jun 2009

This board has been so helpful to so many of us, and, I hope that we can help you. I am just so sorry that you are here because of bc. I wish you good luck and know that you are with your pink sisters now, day or night.

Hugs, Jan

disneyfan2008
Posts: 5927
Joined: Oct 2010

so sorry..you are going through this...

Denise

ESDC
Posts: 43
Joined: Sep 2012

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ESDC
Posts: 43
Joined: Sep 2012

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ESDC
Posts: 43
Joined: Sep 2012

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

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DianeBC
Posts: 3888
Joined: Jun 2009

Welcoming you and adding positive thoughts and prayers!

Hugs, Diane

ESDC
Posts: 43
Joined: Sep 2012

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AppraiserGirl
Posts: 20
Joined: Jul 2009

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.

Pinky68's picture
Pinky68
Posts: 206
Joined: Jul 2012

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

ESDC
Posts: 43
Joined: Sep 2012

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 xx

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Sending a warm welcome to you and a huge hug!

Megan

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Sending a warm welcome to you and a huge hug!

Megan

ESDC
Posts: 43
Joined: Sep 2012

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.

Eliza

AppraiserGirl
Posts: 20
Joined: Jul 2009

Hey Eliza:

I'm not sure of the answer to your question, but I think it might depend on alot of factors with one's type of cancer, etc. I've heard of chemo and radiation used before surgery in order to shrink the tumor if it is too big. No questions are stupid when it comes to your health.

Hope this helps and that you are doing ok.

Take care,
Laura

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

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.

jendrey's picture
jendrey
Posts: 377
Joined: Sep 2009

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)))

carkris's picture
carkris
Posts: 4553
Joined: Aug 2009

yu need peace so if you ca get a second opinion you should get it. can you push it through?

ESDC
Posts: 43
Joined: Sep 2012

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

XXXXX

JoAnn4818's picture
JoAnn4818
Posts: 83
Joined: Jan 2011

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

ESDC
Posts: 43
Joined: Sep 2012

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 xxx

MAJW
Posts: 2515
Joined: May 2009

Just wanted to welcome you to this site....as you've already noticed, it's full of wonderful, informative women in every stage of breast cancer, recovery, and remission....I hate the reason you had to "find" us but glad you did......hoping you get the second opinion soon....

Keep us updated, we care...
Hugs, Nancy

weazer's picture
weazer
Posts: 440
Joined: Mar 2010

I found it helpful too right all my questions down so when I would meet with docs that they could answer my many fears.
All of it is so overwhelming, do you have a close friend or relative that could go with you for support?
Lots of Hugs and Prayers....Karie:-}

ESDC
Posts: 43
Joined: Sep 2012

Thanks Karie. You are so right everything does get a bit overwhelming and all those questions just seem to slip out of my head. I've prepared a nice long list now and I'm keeping a journal as suggested by another sister on here. I'm so luck you have found this site.

Hugs and prayers to you too.

Eliza xxx

ESDC
Posts: 43
Joined: Sep 2012

Hi Nancy,

Thanks for welcoming me and showing an interest. Hope you're having a good day today.

Love and hugs

Eliza xxx

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Everything dealing with bc is overwhelming, starting with hearing those words that you have cancer. I hope that you find all the support you need here as we do understand totally.

Lots of hugs and prayers for you,

Lex

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Sending lots of positive thoughts, prayers and cyber hugs!

Debby

penelopeisahill007
Posts: 1
Joined: Sep 2012

I too, went to panic. I was diagnosed with invasive, agressive ductal cancer with 6cm tumor.
I have 1 more dose of Paclataxil (13 total) and they are switching me to FAC coctail. 4 of those 1 every 3 weeks. Then surgery. My surgeon could not get to clean tissue with the size of the tumor. They did a neck down body scan and it has not metastisized. So I have a shot at this...now, the decision to have a mastectomy or lumpectomy is coming up. Since my surgeon backed off and let the oncologist do his thing first I have a choice. If my surgeon had gone in first....there would have been no choice. They communicate every appointment. I have learned to trust them both...however...i educate myself on chemo..dosage..what is the latest...and they have nailed it on the head each time. What i know is that I don't want to do this again...FAC is going to probably kick my ass..i hope not but like I said...I don't want to do this again. I don't know your age...I am 60. My husband died last year of throat cancer and the last thing he took was FAC. Naturally, I equate it with a horrible event in my life. I have to let it go to go forward.
You are where you are. Start getting on line ...i have checked the stats on the success rates of my chemo..what are the absolute best results...etc. They got ahead of themselves or so it seems...i was not for waiting ...i pushed my surgeon but he didn't give in. I just wanted it out of my body. Did you have an oncologist at the time of surgery??
Slow down...take a deep breath...what can be done at this point? Find out what your options are and go from there....i have spoken with doctors from Mayo clinic, Shands, cancer centers of America, you name it ....i've been on their website. I do not know what I will decide, but my surgeon is doing another body scan before we decide on lumpectomy or mastectomy. I would like to stay in contact with you to see how you are doing. I love and trust that you will do well.
Penelope

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

Just wanted to share my story. I was 33 when diagnosed with Stage 3 (large tumor, 4 nodes). My tumor was estrogen and progesterone positive. I had a left-sided mastectomy followed by chemo and tamoxifen. After chemo, I had radiation.

That was 25 years ago! I am sure that my treatment was less than perfect, but I was very compliant and lucky enough to have a tumor repsonsive to treatment and here I still am.

Coping was very hard for me, especially the first few years. Anxiety and depression are about 25% more common in cancer patients, so let your medics know if you are really overwhelmed. The medics can really help with this. Antidepressants can help, but, especially if you end up on tamoxifen, make sure your antidepressant is ok (paroxetine, buproprion and fluoxetine can interfere with treatment).
Cancer and Depression
http://www.cancer.gov/cancertopics/pdq/supportivecare/depression/Patient/page2

I believe, from what you are sharing about NHS, it may be wisest for you to get treatment started before asking for a second opinion.

As far as doses, etc., I have to confess that I never asked (and I am a nurse practitioner). I just tried to do what I needed to do. I have gotten a few second opinions along the way, mainly to reassure myself that I was doing everything I could do.

You should soon find out the status of your tumor: whether or not there are estrogen and progesterone receptors and Her2Neu status. More about that here:
Tumor Characteristics
http://ww5.komen.org/BreastCancer/TumorCharacteristics.html

Hang in there! And welcome to the message board you didn't want to belong to, but we welcome you with open arms. Hugs and prayers.

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