Post treatment anxiety and scar tissue!

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Nicole112
Nicole112 Member Posts: 327
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I have really been having one of those weeks, I had a lumpectomy,followed by a re-excision, 8 rounds of chemo, 33 blasts of radiation. AS I later would realize, my radiation boosts were really close to my nipple area. With this said, I am 10 months post treatment and m scar tissue area is extremely hard and big!

Approximately 2 months ago, the area became inflamed and red. I went to the dr thinking the worst, recurrence! I was grateful to hear it was infection. (Not a fun thing to have but it was not cancer!) They had to aspirate it with a needle and then I took antibiotics. Once the infection went away they ordered an MRI to be sure there were no underlying issues... (meaning recurrence)

Fast forward, got the results from the MRI that there was an area of interest, the same area where the infection and scar tissue is. So, off to the ultrasound for another test to look in that exact area.

I am grateful to say, we are confident it is scar tissue and fluid, no cancer!

I am curious if any of you ladies have this issue as I am constantly trying to massage the tissue but it just seems to be my new breast. The scar tissue is just too thick!

I went for my routine dr's appt yesterday and he said it was not the typical amount of scar tissue! Something any woman wants to hear, haven't we heard it all.

So, the rollercoaster we so desperately want off of seems to have a way of keeping us on it! Please share your experience and put my anxiety to ease if you have had similar issues!

Thanks!

Nicole

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  • KPolasek
    KPolasek Member Posts: 184
    edited October 2009

    Nicole,

    Yes .... I have this same problem.  I was diagnosed 10/07, lumpectomy 11/1 -- my incision opened up completely at the time I was supposed to be able to take my steri strips off .... I bled out terribly.  I opened up slightly two other times.  I am large breasted and I did not wear a post surgery bra that I found out later might have helped some.  I, too, have a LARGE scar tissue area.  I have had ultrasound - radiologist said that he saw fluid and recommended a digital mammography and also an MRI.  I have had both of these ... and was told that everything looked okay.  However, I continued to have pain and concern about the scar tissue area.  My onc said that it was unusual.  Because I have been in a lot of pain since radiation, I did also go to a lymphedema therapist and my husband learned how to do the massage.  She said that it appeared to be lymphedema.  Not totally convinced that it is lymphedema, months later I went to a cosmetic surgeon who was concerned that I had IBC.  The cosmetic surgeon said that it did not appear to be lymphedema but edema.  He checked with the surgeon and found out that the surgeon had to go very close to the skin covering to get a clear margin ..... and my cosmetic doc said that this is contributing to the swelling in that area (close to the nipple).  To be sure he sent me to consult with another surgeon and he confirmed what the cosmetic doc said.  I just had my yearly regular mammogram in August and they said all was clear.

    I don't know about you but I am tired of worrying about it.  The lymphedema therapist did say that the radiated area's skin should not be massaged as they do not know how the skin will react.  However, I had not massaged my breast at all before I saw her.  For me I wonder "if only" I had done this or that .... and now I just try to ignore the pain and live each day as best I can.

     I figured there had to be more than just me who suffers with lots of scar tissue..  keep me posted on what your journey reveals.

    Blessings,

    K

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited October 2009

    Nicole

     I too have alot of scar tissue.  My tumor was in the underside of my breast (say around 7:00 oclock).    I have alot of tenderness and still swelling in my lumpectomy incision and where they removed the nodes.   They also said that radiation increases this scar tissue and any fluid build up.   I have had many pet scans and recently a breast MRI and it is just scar tissue.   I can't get a mammogram on that side because it is so painful to the touch let alone the giant squish of a mammo.   I too was so afraid it had come back.   My oncolgoist said they have massage therapist that can work through the fluid and scar tissue to bring some relief.  However for me the real relief was that is wasn't cancer and somehow I can deal with it so much easier now.  

    Jennifer

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  • Nicole112
    Nicole112 Member Posts: 327
    edited October 2009

    K and Jenn,

    Thank you so much for your posts, I thought I was starting to go crazy as they keep sending me to different appts. So, mu ultrasound confirmed this is 100% scar tissue, with this said my dr's agree with what you have been told, too. The area in which I had the surgery was very close to the skin and to clear the margins they had to remove so much tissue. As well, they have referred me to a lymphodema clinic, I have my appt next Friday. So, I am like you ladies, so rateful to hear this is not RECURRENCE! I can manage anything else right now is how I look at it! They will continue to monitor me every three months.

    Can I ask you ladies, do you do 6 month maintenance with Zometa infusions? I am not sure of your age, I am under 40... with this said, they recomend the Zometa infusion for my bones. I have had it twice now going for my 3rd infusion Jan.

    Also, how is your hair coming back, CURLY?!?

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  • lexislove
    lexislove Member Posts: 2,645
    edited October 2009

    I'm doing Zometa every 6 months, my 4th infusion will be January. Im 32 yrs old.

    My hair did come back curly, but now that it is about 8 inched the curl is weighing down, so now it is a wave. I decided on hair extensions though, I have an appointment next week to tighten them so at that time I will actually see what my real hair is like...lol

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  • London-Virginia
    London-Virginia Member Posts: 851
    edited October 2009

    Dear Nicole, I am sorry you have had such a rough time of it.

    I don't know if this is any help, but should you get swelling or soreness, honey dressings (called Activon Tuylle in the UK) are immensely good at fixing things.  You might ask your docs.

    I don't know ifthis might help those areas very ner the nipple that seem troublesome.  All I can tell you is that these dressings have done me a lot of good.

    warm hugs..xxxxxxxxx

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  • Nicole112
    Nicole112 Member Posts: 327
    edited October 2009

    Ladies,

    My doctor has let me know I have breast lymphedema, can you believe it! I need to go to the lymphedema clinic next week, I am shocked as I was never aware you could get this in your breast, always thought it was your arm... which is more common. Let me just say, I am soooo over the boobs, anyone else with me :)

    I will post what the treatment protocol is, all they tell me is more woman have it than they know it just goes undiagnosed!

    I have a 2 hour meeting at the clinic next friday, please let me know if you have ever heard of this, I might just start a new thread!

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  • javmo3
    javmo3 Member Posts: 9
    edited October 2009

    Hi,

    I just read your post about breast lymphedema. I found this interesting as I have had a little problem with swelling of my uppper outer quadarant that comes and goes. Thankfully, I had an ultrasound yesterday that showed NO fluid! I too have been looking for others with this symptom without luck. Everything in research talks about the arm. I also had the ultrasound for lumps in my axilla. I believe it to be scar tissue, my radiologist suggests a biopsy. I go for a chest CT scan tomorrow. Back to the surgeon on Tues. for his decision. I thought the BC would come back, but not so soon! Just 6 months out of treatment with 4 AC, 4 Taxotere, 33 RADS and on Tamoxifen since Apr. Oh well, time to wait and see...again! Let me know about your eval and how it is going...

    Take Care!

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