Considering opting out of radiation

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  • macb04
    macb04 Member Posts: 1,433
    edited April 2017

    He Kelly,

    Here is some info about using Pentoxifylline (400mg three times per day)and Vitamin E (400IU three times per day) to treat or prevent Capsular Contracture.

    I take it myself, and am doing well about a year out. I had severe Radiation Fibrosis before I got the Implant, really thick, woody texture to my skin. I got Hyperbaric Oxygen Therapy, numerous episodes of Fat Grafting and then use the Pentoxifylline and Vitamin E daily. No side effects at all. My skin is now nearly normal in texture and appearance Look into having your doctor prescribe it. This is just one example of the numerous studies out there using it to help. PM me if you want more details. I will also PM this article to you, but just wanted it out there for general information for the others.

    Reduce skin fibrosis & possibly breast implant contracture after radiation therapy: vitamin E & pentoxifylline

    Aug 1, 2011

    Most patients typically develop only minimal skin fibrosis after their radiation therapy, however for those who have a more significant degree of fibrosis I often recommend a combination of vitamin E (400 I.U. twice a day) andpentoxifylline (400 mg, three times each day).

    Fibrosis can develop months-to-years after radiation therapy to any region of the body, but is most common in theextremities, breasts (read more about implant contracture, below) and head and neck where higher radiation doses are often required on or just below the skin surface.

    How does this treatment work?

    It is not entirely clear how these molecules work to reduce fibrosis.

    Vitamin E may act as a antioxidant, helping to prevent ongoing free radical damage to the radiated tissues.

    Pentoxifylline may be involved in blocking the molecular signaling pathway that is responsible for the development of fibrosis as a response to inflammation and injury. Additionally, pentoxifylline increases the flexibility and permeability of red blood cells which enables them to more easily bring oxygen to the tissues and carry carbon dioxide away. It is because of this mechanism that pentoxifylline is used in the management of peripheral artery disease, leg ulcers, strokes, high-altitude sickness, eye and ear disorders, and sickle cell disease and diabetic neuropathy.

    Results of treatment:

    Significant improvement in pain, tightness, muscle strength, edema and range of motion have all been reported with this treatment.

    It seems that the earlier that this treatment is started after the development of fibrosis the quicker the response, however this combination therapy is still effective (approximately 60-70% reduction in fibrosis) even when started many years after radiation therapy.

    Have patience:

    It is important to recognize that this medication combination can take 6-48 months to achieve the best possible results. In one study, it took a median of 16 months to achieve a 68% reduction in fibrosis for those who started treatment within 6 years of completing radiation therapy and a median of 28 months for those who started treatment greater than 6 years after completing radiation therapy. Relapses were found to occur more commonly among patients who took this treatment for less than 12 months.

    Duration of treatment:

    • For severe skin fibrosis, I recommend that treatment continue for 3 or more years.
    • For mild-to-moderate fibrosis, I recommend that treatment continue for at least 1 year.

    An increasingly common issue: Breast implant contracture following radiation therapy

    As more patients undergo breast reconstruction (with eithertissue transfer/rotational techniques or implant prostheses), it has become more common in oncology and plastic surgery practices to have to address breast cancer treatments in this setting.

    All patients with breast implants or expanders will eventually develop scar tissue (fibrosis) surrounding the prosthesis as a consequence of the body's normal immune/inflammatory response to a foreign body. This fibrotic response varies in severity among individuals, but it is estimated that up to 25% of women with breast implants undergo revision surgery (at 10 years) due to implant contracture (shrinking and or hardening of tissue surrounding the implant). Following radiation therapy, implant contracture rates are increased due to the effects of radiation fibrosis. (picture on left: This patient developed an implant contracture after radiation therapy to to her right breast and implant. The superior implant displacement and circumferential tightening are common findings.)

    Although the rates or lower in women who select breast reconstruction with their own tissues (tissue transfer or rotational techniques), they are also at a higher risk of developing contracture and fibrosis of their reconstructed breast after radiation therapy to these tissues.

    Vitamin E and pentoxifylline are being investigated as a prophylactic therapy to reduce the incidence and severity of implant contractures or implant loss after receiving radiation therapy to the chest wall or breast in the setting of breast cancer treatment. The results of these investigations will be important in helping us better direct our management of this condition.

    Starting this treatment during radiation therapy is not recommended, as vitamin E may reduce the efficacy of radiation.

    Bottom Line:

    Vitamin E and pentoxifylline is a useful therapy for patients with radiation-induced fibrosis. It can reduce the signs and symptoms of this condition dramatically in the majority of those who continue taking it for at least 6-12 months (or longer in cases of severe, long-standing fibrosis.)

    The use of vitamin E and pentoxifylline following radiation therapy to reduce the risk of breast implant contracture and failure is under investigation.

    If you think that you might benefit from a course of vitamin E and pentoxifylline, discuss this with you radiation oncologist.

    The dosing is:

    • Vitamin E (I recommend you buy "mixed tocopherols", as you want to include more than just the standard "alpha tocopherol" form): 400 I.U. twice a day and
    • Pentoxifylline (ask your doctor for a prescription): 400 mg, three times each day

    Here's one of my favorite mixed tocopherol (Vitamin


    About Brian D. Lawenda, M.D.

    I am an integrative oncologist. I trained at Massachusetts General Hospital (Harvard Medical School) in radiation oncology and through Stanford-UCLA (Helms Medical Institute) in medical acupuncture. I am the founder of IntegrativeOncology-Essentials.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2017

    I did not have mx (and thus no implants to contract after rt) but I did have radiation fibrosis that had become quite painful a few months after finishing rt.

    PT helped but it was when my BS put me on the Trental & Vit. E protocol that we really began to see change. In my case it didn't take long at all. I've had no side effects and the Trental's inexpensive under my insurance. I'd have no qualms about giving it a try. Good luck.

  • Gardengal123
    Gardengal123 Member Posts: 2
    edited May 2017

    thank you for sharing this. I am researching all I can because I too am considering no radiation, but possibly anti estrogen treatment, alone right now. I just had a lumpectomy and am 61 years old. No health issues at all in life so far except starting a cpap a couple years ago. I began to really clean up my diet to more of a plant based, low fat diet. I am thunking of giving up alcohol altogether, especially if I pass on radiation. Its the long term risks of radiation that makes this approach something I question. I would also like to save that option in case I need it in the future. Like you I am just trying to figure it out. I am 5 years past menopause. This is the only spot fhey had been watching for years and I caught it early. It is clearly a menopausal type of event for me.


  • Gardengal123
    Gardengal123 Member Posts: 2
    edited May 2017

    I am considering whether or not I want radiation after my lumpectomy last week. I am 61. I am reading of disfigurement from radiatiin and especially the intensive short term kind like you received. I live two hours from treatment and will have ro live there. 2 weeks is tops of whst I could do but am mostly interestedin how your breast has handled this radiation. I hope all is well for you.

  • InStitches
    InStitches Member Posts: 80
    edited May 2017

    Gardengal, I think you are wise to carefully consider. If I had to do it all over again I would have had the Oncotype DX test first and if I had a low risk score then I would pass on the radiation. With that said though, I had as good an experience as you can have with radiation therapy. I worked throughout my six weeks of treatment and did have some fatigue but otherwise very little discomfort. One thing I learned after my therapy had initiated is that typically they will not do radiation again if you have a recurrence.

    Also, one additional point for me is that my DCIS and LCIS was in my left breast which is concerning for radiation fibrosis that can damage the heart.

    Wishing you all the best,

    Nanc

  • MichelleMME
    MichelleMME Member Posts: 7
    edited May 2017

    I too am considering opting out of radiation this time around. My situation is a bit different then most though. I was first dx in 2013 with IDC in the left breast and ILC in the right. I was 42 at the time. I had a lumpectomy on each side followed by 33 radiation sessions on each. Last summer I was dx with a reoccurrence of the ILC on the right side. I did the dose dense AC-T chemo treatment (with partial response) followed by mx at end of March and my ovaries and tubes removed two weeks ago. Pre mx I was told there would not be any radiation this time around due to the risks of radiating the same area twice. Now I am being told the opposite. Pathology showed the ILC had infiltrated my skin (nodes were negative) thus my MO, SO, and RO want to radiate me again as they are concerned (but not sure) that there could be some cells left behind. The idea of this makes me very uncomfortable with the risks of a secondary cancer/radiation poisoning and to top it off and it would take any hope of reconstruction off the table for me which sadly is a huge deal as I am VERY unhappy and uncomfortable living with a large, triple D, uni-boob.

  • KellyAnneRichardson
    KellyAnneRichardson Member Posts: 1
    edited August 2017

    Hi Alaska Gal,

    I googled just about the same question and your post popped up. I see its older and was wondering if you did choose the alternative route and if you did, how is that working out? I have decided not to do the suggested radiation and to choose Gerson Therapy. I also already live a pretty healthy lifestyle and eat fairly healthy but know that i need to do a complete change if I go this route.

    Hope you are well :)


  • Painter137
    Painter137 Member Posts: 18
    edited August 2018

    I know this is an older thread but I was wondering how you all are doing! I am in the same position trying to decide if I will opt out of radiation.lumpectomy left breast Stage 1a clear margins clean nodes no vascular invasion Grade 1 er positive progesterone neg.her2 neg. Waiting on oncotype results.Also had bc in my right breast14 years ago Stage 1 mastectomy and chemo Need to hear from like minded women!

  • JoE777
    JoE777 Member Posts: 628
    edited August 2018

    Is the cancer metastatic or a different type of cancer? That really makes a difference. Hate you're dealing with it again. Healing hugs

  • JoE777
    JoE777 Member Posts: 628
    edited August 2018

    Painter, I'm curious if you're taking Aromatase Inhibitors if you're HR+

  • Painter137
    Painter137 Member Posts: 18
    edited August 2018

    JoE777 thank you for responding! Yes Er positive her2- waiting on oncotype for progesterone marker.This is a new primary just had lumpectomy last week I took the path of least resistance this time because it was an early stage.I am not on any hormone therapy yet.One week after my mastectomy 14 yrs ago I developed M.S. it was a terribly rough time in my life.I am still dealing with it today and I am making decisions based on my quality of life. Every attack has happened after anesthesia the worst being a numb arm that has since gotten worse after this recent surgery! My neurologist feels radiation is not the best thing for me but my oncologist is pushing the issue!Of course I'm fearful of recurrence but trying to decide if I can live with choosing no radiation!

  • Janemaria
    Janemaria Member Posts: 8
    edited September 2018

    Iloveanimal... Hi, I am very curious to know what path of treatment you decided to take?

  • dolcevita
    dolcevita Member Posts: 9
    edited January 2019

    Not sure if this thread is still active, but  I am in the same boat, so I will post anyway. I am grappling with what seems to me to be possible overtreatment for my diagnosis and reading previous posts, it sounds like a lot of other women feel the same.

    I had the initial consultation with the RO last Friday. When I asked him how much benefit radiation would really provide me, I don't feel he really gave me a good answer. I couldn't tell if that was because he didn't really know for sure or he didn't want to admit the benefit would be minimal for me. He did say the plan for me would be the shorter 3 week/16 treatment option. I am supposed to do my CT simulation on Tuesday but I am also having the initial consult with the MO earlier that morning. I also plan to question her about hormone therapy. I really wish someone could tell me risk of recurrence WITHOUT radiation or hormone therapy. Then it would be much easier to make these decisions. The percentages they quote you about recurrence are all relative. Say for instance, when they say something reduces your recurrence rate by 50%, you don't really know 50% of what? 50% of 100% is ok. 50% of 2%...not worth it....at least not to me. My tumor was on the left side, deep, medial aspect, so I am worried about effects on sternum/ribs and heart/lung exposure during radiation. The RO assured me they would do what they could to "shield my heart and lungs". I also realize that these side effects may occur in only a very small minority of people. I may or may not balk... I don't know yet...

    I know it is likely they will push the hormone therapy too, as I am fairly young and have very dense breasts. I am certainly not adversed to trying it but if I do experience significant side effects and end up having to take 3 other pharmaceuticals to counteract those side effects, then forget it. I don't want to be "polypharmacy" before the age of 50, especially for such a low risk tumor. I know cancer treatment is just a crapshoot.

    I have also come across several articles on a PubMed search stating how some cases of non-clinical, small, low grade, early stage breast cancer detected by mammography are thought to be "overdiagnoses", meaning that some of these cases, even some IDC's, are being overtreated as they are tumors that would never have caused any harm to the women over the course of their lifetime. That is kind of crazy if you think about it, if you start thinking maybe you are being treated for something that you never needed treatment for in the first place.  I am not sure how physicians are supposed to guess which of these tumors will become a problem and which won't, so they treat them all the same way. Also I can't imagine there are any women out there who will opt out of surgery and just decide  leave the tumor there to see what will happen...







  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    I don't think radiologists or oncologist expect any resistance to radiation or hormonal treatment. They just think many make it through with no significant side effects so why would anyone not want to do them? Remember they are focused on killing cancer cells not about quality of life after treatment.

    I don't think there is any data supporting statistics on doing hormonal and radiation vs not having it. There is some data on chemotherapy treatment vs. Risks.

    Best thing to do is gather as much info about your cancer and treatment and make your own judgement call. Talk to your oncologist don't be intimidated to I guess mine, who is tops in his field, but you would be suprised. I found after going over the statistics and benefits of chemo vs no chemo my oncologist agreed to work with my plan. Ownership is important, believing you are doing the best treatment for yourself is crucial.

  • moth
    moth Member Posts: 4,800
    edited January 2019

    Predict will give you the estimated benefit of hormonal treatment https://www.predict.nhs.uk/tool

    One radiation benefit calculator is here https://www.tuftsmedicalcenter.org/ibtr/

    There is research on this stuff. The doctors are making evidence based recommendations and they should always be able to give you the data when you request it. Here is a recentish study showing the benefit of a boost, on top of regular rads https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58242...

    & another one: "In recent population-based studies long-term overall survival (OS) might even be better than that following mastectomy without radiotherapy (RT) (1,2). Overall, WBRT halves the 10-year rate of any breast cancer recurrence and reduces by about one sixth the 15-year breast cancer-related mortality (3). Nevertheless, the absolute reduction in the rate of relapse and cancer mortality are to some extent proportionally affected by patient- and tumor-related characteristics including age, grade, nodal involvement and estrogen receptor status, calling for the need of tailoring clinical indications for WBRT (3)." http://tcr.amegroups.com/article/view/11288/html


  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    Moth, I get 2% hormonal benefit. I was never offered radiation not needed. Thanks for calculator.

  • dolcevita
    dolcevita Member Posts: 9
    edited January 2019

    Moth, thank you so much for the radiation benefit calculator and other info. That does clear things up for me, and it shows that radiation may actually have a little more of a benefit that I thought it would. I had already found Cancer Math and Predict, which shows that hormone therapy doesn't really make that huge of a difference with my tumor stats.

    Meow13, I agree, I think most doctors don't think you are going to question the standard of care. The RO was kind of taken aback when I started asking him what the true benefit was for someone like me with a small, grade I, stage IA tumor completely excised by lumpectomy. His response was basically that I should have understood that since I chose lumpectomy, radiation was pretty much mandatory. My response was that I simply couldn't justify a complete mastectomy on an 8mm low grade tumor. You are right, we must all find out as much as we can and make our decisions based on what we feel is right for us.

  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2019

    I don't think doctors believe treatment is one size, fits all but I do agree the vast majority don't expect women to refuse treatment altogether. I agree don't be intimidated if you believe your plan is the best for you. They do give sage advice after all they have the expertise but the bottom line is it isn't their bodies or their lives.

    QOL is important. It doesn't make any of us whiners if we complain about the side effects. Again our bodies and our lives.

    One very important lesson I learned throughout this journey/process is to be your own advocate. Do your homework. Ask questions. It is an epidemic disease and doctors are overwhelmed. That doesn't mean you shouldn't demand and expect the best possible care.

    Diane

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