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mimsi's avatar
mimsi
Member
9 years ago

Angiosarcoma from Radiation Therapy- any experiences?

:) Hi

It is 10 years since my diagnosis and chemo/ radiation treatment and I feel blessed and my chances of recurrence are now low after 10 years with 2cm/ grade 3 /clear nodes/ triple negative diagnosis.

Although I had shown a small purple spot (no lump) to my oncologist 3 years ago on the same breast but opposite side to the tumour, he said just to keep an eye on it and it hadn't changed. I don't have follow ups with him but do have mammograms and it was never an issue.

In November I had a PAP smear with a different GP (checked out breasts too) who noticed it and asked a skin specialist working in the practice to check on the spot and before I knew it had a punch biopsy showing abnormal blood vessels which could precede angiosarcoma. This lead a week later to an excision which didn't have clean margins (larger under the skin than on) and another excision- now 5 cm scar but good clean margins - great present for Christmas!

Research I have done is that angiosarcoma is a nasty fast spreading cancer of blood vessels, especially aggressive if caused by radiation and possibly more likely in the presence of lymphedema (I had a post op infection and cellulitis that left me with chronic breast-only lymphedema). It could occur in up to 1 in 200-300 women post breast cancer radiation and may not start until 7- 20 years post treatment. 

I was lucky to have my spot excised before developing possibly into angiosarcoma but would have liked to have been better informed about this previously. Apparently I am to be screened as if for melanoma every 3 months, but it may not show on the skin again so this screening could be of no use anyway.

I wondered if anyone has had similar experience and if so how are you screened  /monitored/ and do you know the chances of recurrence?

Mimsi

8 Replies

  • Nadi's avatar
    Nadi
    Member
    9 years ago
    Thanks Mimsi. I finished radiation in May 2016 so I am not concerned about angioscarcoma or AVP. But your story just shows how we need to be vigilant going forward especially if we have unusual symptoms or changes, no matter how minor, that don't do away. As you say we should take responsibility for our own health. Good luck with everything.
  • mimsi's avatar
    mimsi
    Member
    9 years ago

    :)   Hi Again

    PS Although it is suggested not to go and 'google' things wildly and make our own conclusions, I believe with so much information being out there and studies changing the ball park all the time, in the interests of our own health we should take some responsibility in research regarding our own health- if we are lucky enough to have to capacity to do so.

    The beauty of this site is that there are others who will assist with sharing experiences, and our wonderful shepherd moderators are out there guiding us, and looking after our interests and health!

  • mimsi's avatar
    mimsi
    Member
    9 years ago

    :)    HI Nadi,

    Sorry to hear about your stress  but hopefully you won't need to go any further than the antibiotics as that will solve the problem.

    As you probably gather Radiation burns usually occur quickly during treatment, so if not fungal yours is probably an localised infection maybe through a small burn/ friction spot that has just grown slowly. My cellulitis infection post op spread like a raised wave across my breast. I also remember a neighbour who had a terrible reaction to radiation with the skin burned from most of her lower breast and unable to wear a bra and she couldn't tolerate not to wear one for weeks until finally a knowing a Doctor fashioned up a sling for her breast which cleared it off the skin and it finally began to heal. Not sure if this would help you too but it does depend on the size of your breast! I had 2 nasty radiation burns that I had to use sanitary towels on top of the dressings to stop my clothes getting soaked at work but they did heal up quickly. Last time I used sanitary products!

    Meanwhile I think that it probably is unlikely that it is angiosarcoma or AVP as it is an accumulative long term blood vessel abnormal development post radiation starting generally from 7-20 years. Since the advent of sentinel node biopsies and better management more and more women having breast conserving surgery and living longer so perhaps some of the long term effects of radiation treatment may only be showing now. I believe associated lymphedema of the breast is also possibly a precursor, as most women with arm lymphedema (a possible precursor to Stewart-Treves Syndrome) had positive nodes removed and were more likely to have had mastectomies.  Certainly you should talk to your Doc if things aren't settling. You would probably be a lot more educated about it than your doc even though she has been through the mill herself!

    Mimsi

    -I am in allied health myself.

     

  • Nadi's avatar
    Nadi
    Member
    9 years ago
    I too have never heard of this and am having my own concerns about a rash I developed on my radiated breast which has come up in the last 5 weeks (as I discuss in my post titled "rash"). My radiation oncologist told me last Friday that she thinks I have erythrasma which is a staph infection of the skin. She gave me new ointment but after treatment for 4 days still no change. Your post just goes to show that we need to be on the ball with these things. I am sure mine is fine, but if it doesn't go away in another month I will be pushing for a punch biopsy just so I can ease my mind.

    Thanks for sharing
  • melclarity's avatar
    melclarity
    Member
    9 years ago
    Mimsi, I have never heard of that before, so it was really great! I had radiation for DCIS in 2011 and I had a recurrence in the scar tissue in 2015, eventhough I had wide margins and tamoxifen 4yrs. So they dont know how it happened in lieu particularly of radiation which was aggressive treatment they said. x
  • primek's avatar
    primek
    Member
    9 years ago
    Wow. No experience but thankyou so much for sharing.
  • mimsi's avatar
    mimsi
    Member
    9 years ago

    :) Hi Ann- Marie

    Thanks for your assistance . This site you recommend was the one I did most of my research on, and am quite surprised with the possibility of 1:200 radiated breasts could develop this but it has not really much publicity - perhaps - some info on it in the next Beacon, as mine, although I brought to thee attention of the medical profession 4 times, took 3 years to be diagnosed? Because survivors are living longer the delayed effects of radiation treatment effects we had are catching up with us. If angiosarcoma is found in the limbs they may even amputate, but if found in the breast, apart from mastectomy what can they amputate?

    "Emphasis can be placed on understanding breast angiosarcoma post-radiation and breast-conserving therapy (BAPBCT). It accounts for 0.5% of patients undergoing a breast-conserving strategy for breast cancer. BAPBCT can present as reddish-purple patches with a hematoma-like appearance, or as a palpable tumor, purple plaques or erythematosus nodules.22 The median latency interval is 10 years and is shorter than the interval from lymphedema to angiosarcoma (Stewart-Treves Syndrome).23

    Some patients develop atypical vascular proliferation (AVP) that does not meet pathologic criteria for angiosarcoma but may represent a precursor lesion or incipient angiosarcoma. This type of AVP usually presents as one or more small, flesh-colored papules or erythematous patches that arise in radiated skin. The current recommendation is that AVP should be completely excised and the patient closely followed up for any new lesions.

    Atypical Vascular Proliferation (AVP) is the benign version of postradiation vascular tumors. The histology and clinical presentation of AVP can mimic angiosarcoma, and repeated biopsies may be required to clearly distinguish these two entities."

    I was lucky to be diagnosed with the AVP which apparently can progress to angiosarcoma (like DCIS can to breast cancer?), rather than actual Breast Angiosarcoma Post Breast Conserving Therapy, as it may have only a 20- 50% survival rate beyond 5 years. Surveillance is still a bit fuzzy except you should be 'seen' by a physician ( GP or oncologist?) 4 x year for first year ( I'd had mine at least 4 years) and then 2 x year after 2 years. No diagnostic tests. Are mammograms any use as it looks a lot more aggressive than my original tumour and that was a triple negative?  I have just been recommended a 3 monthly visit to a skin cancer clinic.

    Any one else with experience in this?

    Mimsi

  • Ann-Marie's avatar
    Ann-Marie
    Member
    9 years ago
    Hi @mimsi, I have just had a chat with our policy team and here is some information for you - click here. We may also have some members online that can help you out as well.