Like a rock in the face

Options
GrooGruxQueen
GrooGruxQueen Member Posts: 33
edited April 2018 in Just Diagnosed

About a month and a half ago my husband felt a lump in my right breast. I went to my gyno and she told me that I should have a biopsy done. Well the results came back positive for cancer. I had the tumor removed and one lymph node. The tumor was cancerous but luckily the lymph node wasn't. At first they told me that I was only going to need radiation but they found out that I have some type of gene, similar to the one that Angelina Jolie had, and I'm going to have to have chemo now too in order to try to kill that gene or the cancer might come back. After I have the chemo and radiation I'll be tested again and if that gene is still there then I will have to have a mastectomy.

I don't think I fully understand what's going on yet, or going to happen, it's all just to hard to take in all at once. I also have epilepsy and my brain doesn't quite work right as it is. I have trouble understanding things so I'm trying to write down as much as I can and my husband comes with me to every visit. I have a lot of trouble remembering things too, even if it only happened last week. So what the drs have told me may not still be up there and I might have left some out. I'm on a ton of meds for my epilepsy and the drs, both oncologist and neurologist, don't know what the chemo and radiation is going to do to them and how they will work.

I'm having a port put in next week and I'll have to go for chemo once a week for about 6 weeks then radiation after that.

I'm hoping to get some good information and advice on here. It's nice to meet everyone!

· Share on FacebookShare on Twitter

Comments

  • CindyNY
    CindyNY Member Posts: 1,022
    edited April 2018

    I haven't come across this scenario before, but that doesn't mean some other woman on here hasn't. It seems like a lot to go through to possibly still end up with a MX. I hope others on here pipe in, I wish you the best. HUGS!

    · Share on FacebookShare on Twitter
  • Georgia1
    Georgia1 Member Posts: 1,321
    edited April 2018

    Good morning Groo and I'm sorry about your diagnosis. This is the most confusing time for sure. Sounds like you may have had genetic testing and have the BRAC gene? And perhaps you had an Oncotype test as well? After a lumpectomy, chemo and radiation are common to kill any stray cancer cells, but they won't change your genes. Getting copies of your test results should help clarify your doctors' recommendations and we are here to assist if we can.

    Wishing you all the best.

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2018

    Hi there,

    Welcome! I'm glad you found us; I feel like I have so much support, encouragement and love here. I hope you find the same. I needed to feel I wasn't singled out by that stupid disease and these discussion boards helped me so much, and offered really great information that I believe might be saving my life--certainly I was helped with relieving side effects from treatments, etc.

    There is a link to a discussion topic called Breast Cancer with another Diagnosis--for those who are dealing with both b.c. and another disease of some kind, etc. I've included the link below; you may find others who are dealing with your same situation.

    https://community.breastcancer.org/forum/142

    Meanwhile it's great your hubby is notetaking for you--mine did--and it helped so much. You don't have + lymph nodes and that's encouraging too, so try to hang onto any good news you get in this journey. We are here to help you!

    Hugs

    Claire in AZ

    · Share on FacebookShare on Twitter
  • GrooGruxQueen
    GrooGruxQueen Member Posts: 33
    edited April 2018

    Thanks everyone!

    If I'm reading my notes right from my visits, some are ones that the dr wrote and they aren't that great to read, the cancer is triple negative invasive ductal cancer and still in stage 1 but it is a fast growing type. At first they were just going to do radiation but it could be back in 2 or 3 years so that's why they are going to do the chemo. My aremargines (I know I've got that word spelled wrong so if you can sound it out and figure out what it is) are cancerous so I'm going to have a PET scan Friday. They are going to do a BRCA test, I'm pretty sure that's what the PET scan is for, and if it is positive then I will need a MX.

    I've had some basic blood work done and yesterday they did more blood work that I think is going to be more detailed. The test results for that aren't in yet.

    The oncologist mentioned about a cynical trial. I'm not sure if that's something that would be good to do or not? I saw there's a forum on here about those so I'm going to do some reading on there.

    I'm very glad my husband found the lump. They told me at the drs office that many times it is the man who finds the lump, not the woman. They said that the cancer is so fast growing that it my not have been there a month ago which is why he just felt it recently. My husband was so scared that I was going to have to have a MX, he didn't realize that you I can get breast implants if I did until someone told him last night at work. He thought I was just going to be left flat chested! He feels a little better now. I had to laugh about this, I hope you did too!

    I don't mess around when I do things either, I could write a book about everything that I've gone through epilepsy related, so in the end I probably will need a MX. Hopefully I'll take it easy on this and give myself a rest though.

    I belong to an epilepsy web site and a woman on there who had breast cancer told me about this web site. She said how great the people were and how much help she got when she went through all of this. I'm looking forward to doing the same!

    · Share on FacebookShare on Twitter
  • Georgia1
    Georgia1 Member Posts: 1,321
    edited April 2018

    Good morning. Perhaps the doctors' notes are about not getting clean surgical margins, meaning there are still cancer cells at the edges of where the tumor was removed. With that + triple negative, chemo makes sense. You might press on the question of masectomy after the next round of tests.

    A clinical trial is a hospital-supervised test of a new treatment and you can read about them on this site, on the Susan Komen site or on the NCI site. I have no experience there but wish you all the best. Sounds like you have a great husband and medical team.

    · Share on FacebookShare on Twitter
  • Ingerp
    Ingerp Member Posts: 2,624
    edited April 2018

    To the OP--I'm a DMB fan too. ;-)

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2018

    Usually a PET is ordered to make sure there are no distant metastases. Please be sure to read up on preparing for that test--I remember that I wasn't supposed to eat any kind of carb or sweets etc. for 24 hours before the test to avoid a false positive result.

    Clinical trials are great things, but I decided because I was high risk not to participate in one--it was a double-blind trial where I'd either be given a supplement called DIM that supposedly acts like an anti-hormonal (or not given the supplement at all). Since I was so highly hormone positive and had + nodes I wanted to know I was actually getting bona-fide medication (Tamoxifen at first, then an AI). In short I was too scared to experiment.

    Hope you're getting good information; it helps relieve some of the fear.

    Hugs

    · Share on FacebookShare on Twitter
  • GrooGruxQueen
    GrooGruxQueen Member Posts: 33
    edited April 2018

    I want to thank everyone again! You don't know how much more I understand about what's going on from just this one thread!!!!

    My mom was also nervous and afraid because she really had no clue what was going on either so I had her read this and she feels a lot better now because she understands things a lot better too.

    Great to know Ingerp!!!!! Just hope I make it through the concert this year because I'm going to be going through all of this during it. Too bad Boyd isn't going to be there, he was my favorite!!!! Even named one of my cats after him - LOL

    · Share on FacebookShare on Twitter
  • beach2beach
    beach2beach Member Posts: 996
    edited April 2018

    Sorry you are here but welcome. Yes, have a list of questions and don't leave until you are fully satisified on the answers they give you. If they did genetic testing then they know if you are BRACa + and I'm sure they would have tested several other possible gene mutations. It doesnt change after surgery or chemo . If the mutation is there its there. Then its up to prevention if you have not been diagnosed, or options if you have. Please make sure he/she explains all your options. If I do this now, what could happen later. if I do more aggressive treatment, such as a mastectomy now, how does that change things for later etc.

    I had a different type of breast cancer. I could have had a lumpectomy and radiation but due to my sister having had breast cancer years ago (Brca negative) I decided to go for a double mastectomy to not keep going through the anxiety of every 6mth a mammo then mri. Too much anxiety for me. I went direct to implants. Hey they are not like my original boobs, these are rounder and bigger. Perfect? No.ripples,,aint so pretty when I flex my muscles..lol, but my guy has not complained a bit. .but I'm here today so I'm ok with it. There are also options to rebuild breasts by taking fat from other areas of the body so they look and feel like the original. (I did not have enough so I went with implants). Many women choose to stay flat and are happy they chose to do so. Make sure whatever you choose you choose for you. Your body.

    Good Luck.

    · Share on FacebookShare on Twitter

Categories