Hardening of Breast, sharp pain and, inversion of original scar!

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TracyM09
TracyM09 Member Posts: 8
edited June 2017 in IDC (Invasive Ductal Carcinoma)

Hello,

I originally had Invasive Ductal Carcinoma, Estrogen eating kind, stage 1 very small! Everything went smoothly, surgery was great the edges were clean, scar is about an inch, sentinel node was negative, Chemo went off without a hitch, and radiation was a breeze all in 2012!! I started Tamoxifen then went on to Anastrazole in 2015.

Ok, my concern is that my breast started to become hard and oddly shaped early in 2015, I thought it was maybe scar tissue, however, my breast hurts, sometimes sharp-sometimes just achy. No one but me seems concerned, though they did a mammo, ultra-sound, and an MRI...not one Doctor has offered a possible complication or solution! I've gone to my Oncologist, OBGYN, and the Surgeon, they just aren't very responsive.

Can anyone help me here? Anyone with the same symptoms?


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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited January 2016

    Could it be that the seroma that originally filled the tumor cavity has resorbed, but the scar tissue capsule surrounding it remains? The disappearance of the seroma might account for both the puckered scar and the distorted shape. I’m wondering what might happen once my seroma recedes (it could take 1-3 yrs, I was told), since radiation (also a breeze) did enlarge and harden it. I was also told not to be alarmed by hard lumps in the former tumor site, which are scars; nor by sharp pains which can be nerve synapses reconnecting.

    If anything ominous is ruled out, might you want to consider consulting with an oncoplastic surgeon for reshaping both sides for symmetry?

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  • TracyM09
    TracyM09 Member Posts: 8
    edited January 2016

    Hi ChiSandy,

    Thank you for replying so quickly! If I had bumps of hardening I would be ok, however, I seem to have tectonic like plates of hardness with narrow gaps of soft painful tissue. The hardening is on the underside of the breast also. Hardening of my breast is something I understand, scar tissue is hard, however, the pain is pretty constant and worsens when it is accidentally hit or laid on! Mammograms are going to become very uncomfortable. All this didn't occur until 3 years after treatment, I thought that was odd!

    I'm glad your Doctors kept you informed, mine failed to mention these surprises! I see my Oncologist in March, I will be expecting some explanations! My Surgeon and I agreed that any surgery will just cause more/different scar tissue. I'm just worried aboutanother form of Cancer getting a foothold.


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  • Bounce
    Bounce Member Posts: 574
    edited January 2016

    Could this be radiation fibrosis? Is it possible for you to make an appointment with your original Radiation Oncologist?

    http://www.cancerforward.org/survivor-resources/experts-speak/Michael-D-Stubblefield-MD/radiation-fibrosis-syndrome-what-it-is-and-how-to-treat-it

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited January 2016

    My hardening is almost the entire outer quadrant of my breast. None of my docs (PCP. RO. MO, LE specialist) nor my BS’ nurse-pract. are particularly worried. They’ve seen it all.

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  • april485
    april485 Member Posts: 3,257
    edited January 2016

    Hi TracyM09, I have this issue as well. My MO sent me for an ultrasound and they feel it is radiation fibrosis and it is somewhat common in women with "smallish" breasts they tell me. It hurts like hell when pressed on and it hurts even just with movement at times although that seems to come and go. My leftie (my cancer breast) is also about a size smaller than my right as it shrunk over the last almost 3 years since Rads. Mine is also in a "sheet" like configurartion and not a lumpy thing.

    Interestingly, my MO took me off my AI for 3 months as I was really struggling with joint and bone pain and during that time, my breast hurt a whole lot less when touched. Not sure why at all.

    Mammograms are a bit more painful than they used to be but I expected that and I just hold my breath and power through as we all do with some of these things.

    Hugs and hope that you get the same explanations as I did. The did tell me they would immediately address ANY concerns I might have and any changes I should call them. They also told me to keep an eye on my nipple and if that changed to call immediately.

    Best to you!

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  • DecisionFreak
    DecisionFreak Member Posts: 589
    edited January 2016

    Hi, ChiSandy, I am sorry to hear about the problems you are having.

    I don't have this diagnosis but I would like to post a link to a report on the topic of large breasts, oncoplastic surgery and radiation for Chi Sandy and everyone.

    Is it appropriate for me to post this link with a brief discussion on this thread? I will not do so without getting the green light.

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  • TracyM09
    TracyM09 Member Posts: 8
    edited January 2016

    DecisionFreak,

    I would be open to reading anything! If you want to e-mail me I'd be happy to give you my address. I have what I consider large breasts, they're D's. I have gotten excellent help already from you ladies here on this discussion board. My Doctors are certainly unaware of Radiation Fibrosis,so I plan on filling them in!

    Thank you!!


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  • TracyM09
    TracyM09 Member Posts: 8
    edited January 2016

    Hey Bounce,

    After reading the stories here and further research around the net, I'm pretty sure it's Radiation Fibrosis. I see the Oncologist in early March, already saw the Surgeon. I thought she and I would go over this last MRI together, I thought wrong! I didn't know a breast could so sensitive, I really have to be careful, like...where the cat steps and when my Pom pounces onto my chest to say Hello!! I'm going to bring up the Radiation Fibrosis, just to see what the Oncoogist says, perhaps he can do some research and get back to regarding treatment!!

    Be Well!!

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  • BethL
    BethL Member Posts: 286
    edited January 2016

    I'm sorry you're going through this. I didn't have pain right away. But about 5 years after radiation my breast started changing too. Along the scar line. It became thick/wide and hard. The area where the tumor also became hard. I worried I would never be able to feel if there were a lump. I had a biopsy a year ago and it came back fat necrosis. Never heard of radiation necrosis, amazing how much we learn here.

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  • Bounce
    Bounce Member Posts: 574
    edited January 2016

    Hi Tracy

    If you can I would suggest making an appointment with a Radiation Oncologist who deals with radiation fibrosis before meeting with your MO. I don't think MO's deal with it.

    Good luck.

    Bounce

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  • TracyM09
    TracyM09 Member Posts: 8
    edited January 2016

    Bounce,

    You know that's not a bad idea, Thanks!

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited January 2016

    Tracy, would that mine were only Ds...or even DD. Did you know that most women are in the wrong size bras? Because American mfrs. (especially those sold in dept. & superstores) generally don’t offer anything larger than DD (rarely, DDD), in order to contain their breasts most women think they need a larger band size--which rides up, doesn’t support, and because the center gore doesn’t sit flat against the chest and give separation creates a “uniboob” effect. Guess what the most popular correct size is on figleaves.com (an online UK-based lingerie store)? 32F.

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  • TracyM09
    TracyM09 Member Posts: 8
    edited January 2016

    BethL,

    Like you, I had no problems at all for the first 3 years, how, does that happen!? My Surgeon doesn't have an answer, and I asked her how much more is coming?! She didn't have an answer for that. Does it just develop then stop, I sure would like to know. I asked my Surgeon if they would be able to detect a cancer through the fibroids, she said yes, however, I'm not comfortable with that at all. The pain is ugly, moving, not moving, and Heaven forbid it gets bumped!!

    If you find a miracle cure, let me know!

    Be Well

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  • she1212
    she1212 Member Posts: 13
    edited June 2017

    How are you today? I'm have the same issue going on 4 years post! Please let me know any treatments available?

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  • TracyM09
    TracyM09 Member Posts: 8
    edited June 2017

    Hello! After going through all the Doctors, including an Oncology Radiologist, I ended up with a Plastic Surgeon! I told him to reduce the left breast and reshape the right (cancer) breast, he did a good job. I'm now a small/medium C on both breasts. The pain that I was having on the right side has diminished greatly, I now have only occasional stabs of pain. I found a CBD Salve that I have been putting on both breasts and every other joint, since 2015, it has worked wonders for making my Scars look nice and for keeping the pain away. I only have one hard spot on right breast, it was like a hard plate before. It keeps getting smaller, so I'm hoping that my body is reabsorbing the necrotic tissue! I did have an issue with internal stitches coming to the surface on the right breast. It happened three times, it was kind of scary as a hole would suddenly open then a stitch would show up very close to the hole! It's all healed nicely now. As to other treatments, I didn't find any. I was willing to have the breasts removed to be visually and painfully ok!!

    I hope you find something to help you, I know that the pain is really horrible.

    Be Well

    Tracy




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