diagnosed a month ago and no treatment plan

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jojomg
jojomg Member Posts: 11
edited June 2014 in Just Diagnosed


I had a mammogram the end of sept. they found a 1.5 centimeter tumor..had a biopsy and its invasive ductal carcinoma...I seen the breast surgeon the plastic surgeon and the oncologist and I am waiting to see if I can have the dei flap..I feel like its spreading and nothing is getting done the breast surgeon said she promises me it won't spread from now to dec 13 ...tentative surgery date and I am getting nervous I don't know what surgery to have...I don't know if I will need chemo...I don't know if I should do a lumpectomy with radiation..my mom had a lumpectomy and rad and 5 years later 3 months off tamoxafin it came back in her lymph node so I am scared to do that and wait for it to come back. I don't know why the plastic surgeon thinks I should lose weight to have the flap because she is afraid my tummy won't be really fat I am 5 ft 4 inches and am 180 lbs with double d cup...so I am just venting I don't know what to do so I"m kinda just acting like it's not really happening

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  • Fiaranch1
    Fiaranch1 Member Posts: 328
    edited October 2013


    jojomg,


    Sorry to be blunt the waiting just SUCKS !!! I was diagnosed Sept 15 and I just had a double mastectomy on Tuesday 10/22. I decided against any reconstruction as this is my 2nd time with cancer (this time was invasive ductal carcinoma). I did not want to deal with it any more 9 on going mammograms) . Reconstruction is a personal choice and you need to do what feels right for you (three is a great discussion group here for any reconstruction questions you have.


    Hopefully your surgeon will do a oncotype test. This test is done after your surgery and determines the probability of the cancer recurring. It is one of the tools the doctors use to determine the need for chemo . Did they give you a stage from your biopsy? or indicate estrogen positive or negative? That plays into chemo ,radiation, etc. Ask lots of questions of your doctors and surgeons they owe you answers .


    Don't spend time surfing the web as there is a lot of mis information out there and everyone's cancer is different . This site has been my best friend since my diagnosis here . All of the members have been amazing for me . We are all here for you ask whatever is on your mind , vent when you have to and do whatever you can do to keep your strength up to get though this !!!

  • jojomg
    jojomg Member Posts: 11
    edited October 2013


    thanks for your advice...the tumor is estrogen positve..progesteren neg and her ...whatever that is.....neg..I really have no idea what any of that means. the oncologist mentioned the test to see if it is likely to return. I feel like I'm taking a chance waiting to have the surgery with a tummy tuck....which really sounded great at first. they can't do the surgery til dec 13 or 14 I can't even remember and I wonder if that is a long time? I feel like I am stuck waiting for something to happen and I really sometimes feel like I just want to forget about it

  • AmyQ
    AmyQ Member Posts: 2,182
    edited October 2013


    While I had to wait for about 6 weeks after surgery and before starting chemo I felt the same way. The wait was making my cancer grow so I asked for and received Femara, the hormone blocker as I am ER & PR + For me it felt like I was doing something instead of letting the cancer continue it's destruction. You may be able to do the same. Good luck.

  • liefie
    liefie Member Posts: 2,440
    edited October 2013


    Dear jojomg, maybe you should see the Dec. 13 surgery date as a positive. It will give you time to get a little fitter and stronger if you are not, and maybe lose a little weight too before DIEP. The fitter you are, the quicker/easier your recovery will be. The less overweight you are, the less chance of incisions splitting open, and becoming infected. Many surgeons actually recommend that their patients lose some weight before this surgery. I had a DIEP flap in May, and I am thrilled with my results. You can read about this surgery on the DIEP 2013 thread. AmyQ has a good idea of starting the hormone blocker as soon as possible.

  • GrammyR
    GrammyR Member Posts: 702
    edited October 2013


    Jojomg- I was diagnosed a few years ago Dec 1, could not see a surgeon until mid Dec then he could not do surgery until Feb 6 the next year . This was in Fl. The same center wanted me to wait until March that year to even see their oncologist. Needless to say I then went and found a different oncology group.


    I was too skinny for a flap and went w/the expander. The waiting is far worse than anything.


    In this day and age of BC awareness worldwide you should not have to wait for surgery.


    Hugs and please do one day at a time. Dr Susan Love's book is a good book to read but only one part at a time. My hubby read the whole book in one day and then wanted to tell me all about it. I had to push back and say " one thing at a time please ".

  • jojomg
    jojomg Member Posts: 11
    edited October 2013


    It seems like the past few days I can feel the tumor and it hurts and it hurts under my arm it could be my imagination running away with me because my dr .the breast surgeon said cancer of my kind willl not grow by dec I guess I have to believe her but it gets harder when I know there is cancer in my body and no one is taking it out...I had a panic attack again tonight after I showered and could feel the lump. but I am on weight watchers and going to try to get healthy for the surgery which ever one I end up having


    ..thanks to you all for your support

  • Ridley
    Ridley Member Posts: 634
    edited October 2013


    Hey Jojo. Just wanted to say that after I was diagnosed, my body seemed to become hyper sensitive, and I had pain in my breast, shoulder, etc. It settled down after a while.


    As for surgery, here is what I did, I had a lumpectomy first. I was not sure about recon and needed some time to see another plastic surgeon, etc. My pathology came back more complicated than expected, and my team has recommended a mastectomy, so I'm having a bilateral with diep reconstruction. I don't regret doing It this way. The lumpectomy was an easy recovery, and gave me time to figure out what I was dealing with after I had the surgical pathology back. As long as nothing new pops in from the mastectomies, I won't have radiation.


    Good luck with your decision.


    Ridley


    PS. I definitely won't have a flat tummy after surgery. I'm ok with that. Wasn't my goal, just wanted recon with my own tissue,

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited October 2013

    JoJo, ask doc what your pathology report states about grade and score. Especially the number related to Mitosis. I went from grade 2 score 6, to grade 3 score8 from Jan23rd till Feb 18th. Relook at bx sample determined no error in grading and score. Look at BCO main board from definitions of grading and scoring.

    If your grade and score indicates aggressive pathology------start raising a ruckus or find a different team. Good luck.

  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited October 2013


    HI JoJo,


    Just to restate what others have said I agree that if your path shows this is aggressive you should try to move things along. You may just want to get second opinions to give you peace of mind about the decisions you are making.


    Like Amy said You can ask for Tamoxifen or something while you wait. I did and my pathology improved from March 25 to May 20. Dropped the Ki-67% and the tumor was shrinking/softening. It also helped my head. They could have given me a TicTac everyday and told me it would have helped and I would have at least felt like I was doing something. I also went to the health store and got DIM Complex. It helps remove all the extra estrogen from your system is my understanding and it is made from cruciferous(sp) veggies.


    I also was considering DIEP, but decided to go with expanders and will get perm implants end of December after radiation. I figured it was much less invasive surgery and if I hated them or there was a problem I could always move on to DIEP.


    You should ask though if you are going to be getting radiation. Some doctors have very strong ideas about whether flap procedures should be radiated or not. My doctor was emphatic NOT! Plus I know it can "firm up" the radiated side and then you are not even without more revisions. We are not going through this much to end up lopsided! Or to ever wear a bra again in my opinion, unless it is just pretty and I want to. Lol!


    Best of luck for you. You will feel so much better once you have some firm plans in place!

  • jojomg
    jojomg Member Posts: 11
    edited October 2013


    I just got a call from the second plastic sugeon postponing my appt till nov 14...I do go thursday to dana farber for tests.I feel like time is moving in slow motion and I am taking way too much ativan I don't want to get hooked on those. so hopefully I will speak to a doctor thursday after a cat scan. ultrasound of my armpit. another mammogram. I also wanted to flap sugery because it is one surgery and the breasts are made from my own tissue. ..thanks Joanne

  • aaoaao
    aaoaao Member Posts: 593
    edited October 2013


    Unfortunately, cancer is one of those disease where it's hurry up and wait. We hurry to get tests and then wait for the outcomes and treatments. Most of the time if the doctors feel like waiting is okay that is a good sign. When they rush you into treatment is the time to really worry. I was initially dx with bc in mid-Nov 2009. I didn't get my masectomy until Jan 18, 2010. Due to delay caused by infections, I didn't start chemo until 5 months later. So there wasn't a sense of urgency. Forward to May 2013, new symptoms, extreme back pain, led to an Xray. Xray revealed a tumor in my lower spine pressing on my spinal cord. I was rush into radiation that very day because of the risk of permanent damage to my cord. After 10 sessions of rads, I started chemo within 2 weeks, just enough time to recover from the rads. Others here have the same type situation. It's never good when a doctor feels the need to start tx right away because they're usually the conservative type and have busy schedules. My onc even insisted on seeing me on her lunch hour, the day after I had the Xray done, because she was concerned about any delays. I know it's hard but try to take the delay as a sign that the doctors feel safe in not rushing things. However, I agree that if it makes you feel better your doctor could start you on a hormonal tx for the waiting period. I hope all goes well and hang in there.

  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited October 2013


    JoJo, I am so sorry they have postponed you again. It is so frustrating because it is the only thing you can think about and they are dealing with so many at once that it is not as urgent to them. I do also agree with Aao that if they were rushing you it would be more to worry about.


    Little more background on my surgery choices. I had never had any surgery until this all happened. In Jan they fixed my ankle but my first ever for real surgery ever was my first MX. I too was totally against anything foreign in my body, but then I got to thinking, if I needed a new knee I would not think twice about it being an implant. Plus the DIEP is SO much surgery and recovery at once I was kinda chicken to go there if a couple smaller surgeries would work and I was happy with it. So I figured I could move on to the flap if I needed to. I went home same day next day with my first and same day with my second. I found little pain and was up and running without too much trouble. I also have had little trouble with the expanders. I had seen and read horror stories, but it has not been anything like that. They are hard and I will not miss them, but can live with them a while longer.


    The reason I suggested you check about radiation is because you can only do those flaps once and rads can damage that tissue. So better safe than sorry.


    I hope you get to talk to your doc on Thursday and get some answers that make the waiting easier. Best of luck.


    Hugs and prayers.

  • msphil
    msphil Member Posts: 1,536
    edited October 2013

    I too had the feeling the process wasn,t moving fast enough and it may spread, But sweetie, take a deep breath and once treatment plan is in effect you will feel better, take it from a 19yr Survivor(Praise GOD) I want to Inspire those going thru, so hang in there, msphil(idc,stage2, 0/3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen) 

  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited October 2013


    That's awesome MsPhil! Bless you for hanging out here and encouraging others along their way. I wan't to be you one day

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited October 2013

    JoJo please, check pathology report and have an understanding of the numbers. That should drive what you do sassy

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