33 years old, no family history, shocked at diagnosis

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  • pj12
    pj12 Member Posts: 25,402
    edited September 2009

    If you are considering radiation therapy you might want to seek out a facility that practices Intensity Modulated Radiation Therapy, IMRT.  The rays can pinpoint the breast and or tumor and avoid the heart and vessels and lungs much better than standard RT.  When accompanied by "gating" which is a breathing technique it is quite safe and effective.  And you only have to worry about heart complications when treating the left breast.  The sessions last a little longer due to more time spent setting up.  The skin effect is the same I think.  My hospital was quite proud to practice this therapy and it is not a major cancer center so it is widely available.  Here's a brief description: 

    IMRT is short for Intensity Modulated Radiation Therapy. The intensity of the radiation in IMRT can be changed during treatment to spare more adjoining normal tissue than is spared during conventional radiation therapy. Because of this an increased dose of radiation can be delivered to the tumor using IMRT. Intensity modulated radiation therapy is a type of conformal radiation, which shapes radiation beams to closely approximate the shape of the tumor. 

    It's a hard decision and there is so much to learn.  Good luck.

    Pam 

  • jencan
    jencan Member Posts: 3
    edited September 2009

    we are very similar and what i am going to say is pretty much what the others have said. my kids were 5 and 2 when i was diagnosed the end of march this year. i was shocked. i have had fibroid cyst for years and it has never been an issue. suddenly though it was huge and my dr wanted it checked. i got the result and couldn't believe it. no family history, pretty healthy all my life. i'm 38 and just never thought it would happen to me. i went with breast-conservation surgery and only have a small scar. i got chemo first to reduce the tumor, then surgery and i start radiaition on the 28th of sept. you can beat this. we are all here for each other and proving that cancer is not going to get us down!

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited September 2009

    I've decided to see my Oncologist before I make any decisions about my treatment.  I think it will make me more comfortable, and as of now, I have an surgery scheduled on Oct 6th -- but that's open to change pending my Oncologist's suggestions.

    I'll let everyone know the outcome tomorrow.

    Thank you all for the great advice!

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited September 2009

    JillyG:  Did you have issues with insuranc approving the removal of the unaffected breast?  I have come to the decision to go with bilateral for the same reason -- I have many years left ahead -- years that would leave me with one sagging, sad boob, and one perky one.

    Just wondering how many of you out there elected to have the other removed and how were your docs about handling the insurance (predeterminations, etc) to have it deemed medically necessary.  That's my big obstacle right now.

  • Lauren3
    Lauren3 Member Posts: 289
    edited September 2009

    PJ, it was my left breast and I just looked and my hospital does practic IMRT.  I'm so glad you told me about this.  Thank you.

    I elected to just have the one breast removed.  I have a 2 year old and I thought the recovery with both would be too difficult.  As it was, I was unable to pick him up for 2 months b/c of having the lymph nodes out.  My plastic surgeon is going to fix the other breast to match the new one when I have my exchange surgery.  That all being said, I can always change my mind and have the other breast removed when my son is a little older.  I believe my insurance would cover it.  They only covered 60% of the recon though because the plastic surgeon was out of network.

  • cyalata
    cyalata Member Posts: 19
    edited September 2009

    Mine was on the left breast & had lumpectomy with chemo & radiation.  They measure everything really well as well as the size of your heart.  They said I had a small heart - I wasn't sure how to take that!  But they said that's a good thing.  Anyway, the chances of any damage to the heart are very slim as they are so precise in their measurements with the radiation to avoid the heart.

  • jillyG
    jillyG Member Posts: 401
    edited September 2009

    Lisa, I'm in Canada so anything you want, its all paid for.  There is no insurance to go through, it's always patient decision and 100% paid for.  US girls will know the answer for sure, but I think they can't deny you surgery on the other side...but not 100% sure on this.  My other mastectomy is going to be a "skin-sparing one", so he said it's a little easier.  Good luck.

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited September 2009

    CANADA!  They're doing it RIGHT!

    LOL!  I'll check with some US Ladies. :)

  • lilith
    lilith Member Posts: 543
    edited September 2009

    Hi Lisa,

    glad to see so many helpful answers have been posted.

    Sadly, many are still young at diagnosis, and the kids/work/family/life questions are very present in our mind. It is good thought to be active and positive, you will come through with it.

    I am in Europe, so the insurance questions are all different. BUT here the insurance picked up the second mx (preventative) following onc recommendation AND the genetic results - I am BRCA2 positive. It may be worth doing it for you? even without family history, you are pretty young, and that alone would be a justification to suspect something. Maybe research the option, and ask you oncologist?

    For me anyway, following the recommendation, everything was paid - mx, double recon, nipples, tattoo... etc etc.  

  • Lauren3
    Lauren3 Member Posts: 289
    edited September 2009

    Lisa, how are you doing?

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited September 2009

    Today I went to have blood drawn for the BRCA1 , BRCA2 test today.  Friday I saw the Oncologist who put in a predetermination to insurance to try to have them approve a bilateral mastectomy rather than the unilateral.  My surgery is scheduled for Oct 6th, but we won't know until Thursday if that is for one or both.  It will most likely be a modified radical on the left and a simpl on the right, with a port put in place as well as tissue expanders.  They tell me that I won't be that sore, but it sure does sound like I'm going to be!

    6-8 weeks after surgery they will start me on TCH chemo, every 3 weeks, 6 treatments.  After that, I will continue to take Herceptin through the port every 3 weeks for a year.

    I will update everyone on Thursday or Friday as to what insurance decides, etc.

    I'm anxious to hear their decision.

    Frown

  • swest
    swest Member Posts: 680
    edited September 2009

    Lisa - My insurance (AETNA) paid for my mx on good breast.  After the MX I received the pathology report and there was DCIS that was not detected in any of the mammogram, ultrasound and MRI.  I don't regret the decision one bit! 

    I live in the Houston area so if you would like to see another Oncologist (not at MD Anderson) or any other doctors I'd be happy to give you the information.

    Hang in there!  It does get better!  I know the waiting is the most frustrating part!

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited September 2009

    Thanks for telling me about your insurance -- it does give me hope.  Everyone involved says that there's a very good chance it will get approved, so I've got my fingers crossed!  That's my biggest fear -- that although the mammogram and ultrasound came out clear on my right side, that there's something in there just waiting to screw up my life 6-10 years down the road!

    I'm trying to stay positive!

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited October 2009

    Good News!  Insurance approved the bilateral MX!  I am very happy about this, even though it means a little more pain and bit longer recovery.  I think it will ease my mind for the future (as far as worrying about Cancer popping up again) and I know that aesthetically I will be pleased with the results.

    My surgery is Tuesday at 7:30 am -- modified radical on left and simple on the right with immediate reconstruction with tissue expanders.  The docs tell me I'll be in the hospital about 3 days.  Does anyone out there have any advice regarding what to expect pain-wise?  I've read things that say it's really NOT that painful, but I've read things that say that the bilateral MX with expanders is like getting hit by a truck for over a week.  Just wondering what to expect; I want to know that I'll be able to take care of the kids.

    Thanks for the support, everyone!

  • Nicole112
    Nicole112 Member Posts: 327
    edited October 2009

    I'm happy to hear this was approved. I had a partial mastectomy and not the radical or any tissue expanders so I cannot comment on the pain... what I can say is reach out to those that you are close with and allow others to help out in this time of your life. I cannot tell you how much I have leaned on my friends, family, and community during this time and how amazed I am at the power of prayer and the amount of outreach my friends did while still managing their own families. This year, during the holidays, I find that I am a more humble person and I have learned that people need people and it takes a village to raise children. One of the most positive things to come out of this horrible disease is my relationships with all those who helped so much!

    Anyway, rambling a bit but wanted to let you know I am happy this is approved and by now you are most likely all too aware of what the pain issues are. Have a good weekend.

  • yasminv1
    yasminv1 Member Posts: 238
    edited October 2009

    Good Luck with Surgery on Tuesday. I am sorry you are dealing with this at a young age. I too am young. I am 31.

    The pain after surgery for me was bad but only because the pain medicine they were giving me via IV was not working for me. I also developed a hematoma. After 48 hours they finally found that 2 percocets worked great for me. Be sure to tell them immediately if you are experiencing pain. I think it would have been easier for me if I would have told as soon as I felt pain. As long as you keep on top of the pain medicine you will be ok.

    The Tissue expanders and the filling process does stink. I was so uncomfortable at first. Now 4 months with them and I only experience discomfort when I have fills or if I lay a certain way. I take a percocet before every fill and for the next 24 hours to relieve the discomfort. The tissue expanders are so hard. I cannot wait until my exchange surgery in December.

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited October 2009

    Hi All!

    The surgery went as well as can be expected.  They did a modified radical on the left, removing 19 nodes, and a simple complete on the right.  My plastic surgeon immediately inserted tissue expanders and was able to fill them to 250 cc each.  I feel that's a great start to getting to a C cup.  Of the 19 nodes tested, only ONE NODE tested positive.  This is great news, as it means I caught it just about as early as I could have.  I'm happy with the results!

    My power port was inserted during the surgery, so I'm all ready and set up for chemo.  I will not begin chemo until my plastic surgeon gets my tissue expanders filled to a C cup, then I'll get started on myt treatments.  He said this would take about eight weeks.

    I get my wrap and first 2 of 4 total drains taken out Thursday and I just can't wait because they are really uncomfortable!  The first few days home were total crap, but I'm good now and then pain is more of a discomfort now.  I can tell the swelling is going down because I have more "room" in my wrap to breathe.

    I'll update after I see what's under this wrap.  I'm sure I'll be shocked!

    Thanks for all the well wishes!

  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    1. You need to tell MD Anderson your biopsy results ask them to schedule your appointment with the surgeon or medical oncologist whoever is likely to treat you first. Usually the RN who does the schedules at Sloan is very good at assessing who is more likely to treat you first. And I think MD Anderson is big on chemo given before surgery. If so, they will get you in the door to see the medical oncologist sooner. You may have to FAX your biopsy report to them to help make your case. Believe me it is worth it.

    2. Re Modified Radical Mastectomy vs Lumpectomy, based on the info you gave us Lumpectomy is very viable. Please see a surgeon - even if not at MD Anderson - who does ONLY breast work.

    3. Re nodes, the standard of care is to do a sentinel node biopsy. If that is positive (meaning cancerous), then they remove axillary nodes. Not otherwise. To locate the sentinel nodes they use dyes or radioactive isotope or both. For someone to tell you that it won't work without trying on you they must be a magician. Once again, please see a surgeon who does ONLY breast work. You don't want them removing all nodes unless they HAVE to.

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited October 2009

    Hey Unklezwifeo:

    I couldn't have the sentinel node test because of where my tumor was.  MD Anderson had a 2 month wait -- even for a consultation.  I've already had my bilateral MX and I start my chemo in 2 months.  My nodes came back 1/19.  My plastic surgeon only does breasts, and my oncologist specializes in breast cancers.  I feel confident.

  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Lisa, is your surgeon a general surgeon or breast specialist?

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited October 2009

    Well the surgeon that did the Bilateral MX (the beginning of the SX) does NOT do only breasts, but has been specializing in mastectomies over the past 10 years, and I picked him because he has almost NO cases of arm swelling after removing lymph nodes (his part of the 5 hour surgery was an hour and a half).  However, it was not HIM that decided what surgery I was to have -- it was my oncologist.  I won't even see the general surgeon again for 2 years, when it's time to remove my port.  My plastic surgeon is managing my surgical care now.

    I guess I don't understand the probing when the surgery has already happened?  I'm confortable with my decision, and 6 phone calls, with 5 of them with rude people, really turned me off to MD Anderson.  They said they didn't care the grade, etc of my cancer because it didn't matter, that it was "first come first serve" there, whereas here, my oncologist, general surgeon, and plastic surgeon were concentrating on ME.  I had the surgeon and oncologists's cell phone numbers.  That's the kind of people I wanted treating me.  The oncologist assured me there was no keeping my breast because of the likelihood of the cancer coming back, no matter what treatment I completed, and to obtain clean margins in my left breast, (a lumpectomy) it would have left me with little breast -- not enough to do anything with.  Lke I said before, the die test was useless because of where my tumor was -- IN MY AXILLA, and all three doctors explained to me that the die would have flooded the area, giving false readings on the nodes.

    I'm very comfortable with my decisions.  I'll gladly answer questions about my procedure, recovery, and treatment, but I will not go BACKWARDS and talk what people think I SHOULD have had done.  It's not healthy, it's not positive, and giving people cause to second-guess their decisions is not positive support.

  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Lisa,

    I was just curious not second guessing. Thanks for the detailed explanation. It will help women faced with the same or similar decisions to know your treatment.

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited October 2009

    No, I flew off the handle a bit.  I'm a little sensitive right now (HAHA!) so my response was probably slightly off-putting.  I apologize for my bulldog attitude.

    You know what a maze of questions and decisions we face after our initial diagnosis -- if it helps someone with their decision, then I'm glad, because this forum really helps me.

    :) Lisa

  • Luah
    Luah Member Posts: 1,541
    edited October 2009

    I don't want to frighten anyone, but cancer can and does recur following mastectomy. The risk of recurrence varies depending on individual risk factors, like age, tumor size, degree of node involvement, margins, etc. and women who are considered high risk should discuss the risks/benefits of radiation with their oncologist. I'm sure most of us on these boards are painfully aware that there are no guarantees, and that even following mastectomy, we need to be followed very closely for possibility of recurrence.

    I'm glad things are going well for you Lisa, and hope you can avail yourself of all the follow-up your  case may require.   Be well.

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited October 2009

    My Oncologist has explained to me the chances of recurrence, especially with the aggressive type I have.  I think that's why he thought it best to have the bilateral.  He has not mentioned using radiation at this time, just chemo and hormone therapy, but I am aware of my risks.  He told me yesterday that with all things considered my cure rate falls somewhere between 80 and 90%.  I sure did want to hear 100!  LOL!  It's a day  by day thing, and I'll do whatever I need to do to stick around for my kiddos.

    :)

  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Lisa,

    I think your oncologist is right that radiation would be too much with 1cm and 1 node. After mastectomy they use it on axilla and/or supraclavicular regions if the tumor is >=5cm or >=4 nodes. Your risk is way less than that. Chemo and hormonal therapy should get you in the odds range you mentioned which is almost as good as someone hwo has never had cancer.

  • bosombuddybeck
    bosombuddybeck Member Posts: 13
    edited October 2009

    Dear Lisa,

    I had both my breasts removed after being diagnosed at age 44 with IDC, 1.4 cm, no nodes, ER+, PR-, Her2-.  I had reconstructive surgery with implants and so glad I did the recon.  I waited for five years to do it, but really love the outcome and have no regrets.  Also had chemo, tamoxifen, oophorectomy and Femara.  I'm 9 years out and still kicking!  I advise anyone going through this to ask lots of questions, arm yourself with info, and get an oncologist that you really trust.  I asked everyone I knew and got 3 opinions before selecting the place to have my chemo and choosing my oncologist.  If you  are comfortable with your decision, then that is what counts!  Good luck!

  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Becky,

    Good to hear your positive experience. I think getting 2nd and 3rd opinions, getting comfortable with your treatment team and at peace with your treatment plan are excellent ingredients for a satisfying experience in these circumstances.

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited October 2009

    Drains are out!  Feels great!  One more week and I'll get my first fill and my steri strips off in a REAL SHOWER!

    I can't wait!

  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Lisa,

    Good to hear the drains are out. The removal of drains is emotionally a very big milestone. I started to feel normal immediately after that (of course until start of chemo!). Congratulations!

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