Wish I had never,never done rads, DEEP REGRETS

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  • macb04
    macb04 Member Posts: 1,433
    edited November 2018

    Rosebella, ironically, SCCA has a great reputation, they are connected to Fred Hutchinson cancer research center. When I was burnt so severely, bleeding , open wounds all over my chest, on Narcotics for pain, I begged dr christine fang, radiation md, for something to help me. She told me to buy this cream Online. First time she had ever mentioned it.

    I called the manufacturer and asked, " How long has this cream been for sale in the US?" She told me it was available 5 YEARS......... 5 F*CKING YEARS!!!

    WHF!!!

    The women at the cream Manufacturer told me then it was SUPPOSED to be used BEFORE RADS. I had express shipped 4 tubes from Amazon, that I couldn't even use. She felt sorry for me, it was too F*CKING LATE!!!

    I asked medical moron christine fang, "WHY?" She gave me some bullsh*t, bogus excuse. When I complained they sent me a form letter.

    I would say they lied like the dogs, but that would be insulting to dogs.

    None of those C's at scca stand for caring or competent.

  • marijen
    marijen Member Posts: 3,731
    edited November 2018

    Which cream was that macb? I was told to use Calendula two weeks beforeBUT! It was the worst cream for me. It made my skin break out in a red rash with the rads and was so painful they had to stop for a week.

  • Artista964
    Artista964 Member Posts: 530
    edited November 2018

    miaderm is a gem cream. Created by an onc radiologist. I was cooked and this cream helped a lot, and drinking tons of water and eating high protein diet. Took 2 years. it looks close to non rad side.

  • marijen
    marijen Member Posts: 3,731
    edited November 2018

    Yes, it took me TWO years! to get back to semi-normal after cellulitis, and angiodema and 30 LE PT appts! The bad part was the radiologist and surgeon didn’t have a clue, it was my new MO that saved me with a referral to another PTclinic.


  • Artista964
    Artista964 Member Posts: 530
    edited November 2018

    I didn't have problems like that. But 2 years for it to calm down after rads is what they say.

  • macb04
    macb04 Member Posts: 1,433
    edited November 2018

    I think it was Miaderm that the incompetent christine fang MD at scca who didn't tell me about till it was way too late, like a freaking useless moron. When I would ask her questions she would usually say she didn't know. She seemed CLUELESS.

    I think the C's in scca must stand for clueless and careless, I really do. I don't understand that kind of incompetence. If I were that bad at my job I would be fired.

  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2018

    macb04, just saw an ad for SCCA "there when you need them". Gag! Thought of you.

  • macb04
    macb04 Member Posts: 1,433
    edited November 2018

    They are the only bc industry bunch in Seattle with Billboards and commercial sponsorships on NPR. Why do they need to advertise so badly? Did the maime and kill off all of their patients, so there is no more money to be made off them? Virginia Mason/Polyclinic/Overlake and Swedish Medical Center, and lots of others also do oncology, but don't advertise. It's creepy, and dishonest.

    scca act like they give a F*ck, when they don't.

  • Artista964
    Artista964 Member Posts: 530
    edited November 2018

    Reminds me of these cancer centers of america ads. They make it look like that's the place to be. You get personalized care. Um, this small hospital I went to gave me great personalized care. Stupid. Plus they don't accept folks with a poor outlook to keep their numbers good. I don't think they even take medicare. For me, I liked the docs and staff and went with the hospital 5 min from me. Most places have the same equipment available. I went in with mega questions and had one of the docs looked like I needed to wrap it up, I would have left. I worked in a surgeons office for 10 years and those docs made us learn info that applied to everyone. If it wasn't to technical we were taught something new all the time so we up front could answer basic questions. That's the way it should be. Sadly it isn't and then you find docs who shouldn't be practicing.

    I think facilities that advertise hard to go there are the ones to avoid. My dad goes to PT for a stroke he had last year. All well advertised places were nothing special. Through a friend of a friend he found a place that doesn't advertise. It's all word of mouth. My dad has made great strides there. Word of mouth is a powerful thing.

  • macb04
    macb04 Member Posts: 1,433
    edited November 2018

    I didn't know anybody locally for a review, although I did check if scca (seattle cancer care alliance) had negative comments. Really hard to find honest info. Seems like it's all sanitized. By the time I knew how bad they were it was too late.

    That's why I comment here, because someone might escape their net if they are given a detailed warning, early enough.

  • Artista964
    Artista964 Member Posts: 530
    edited November 2018

    it's like me right now trying to find a good honest mechanic. After going with a highly recommended computer repair with glowing reviews, it was a big dud. I found 1 review wondering how a review from him got posted. This dude stole his id and posted a glowing review. Thankfully I found a coworker who's had good experiences with a place. That's the only way to go, someone you know and trust refers you.

  • MsStoic
    MsStoic Member Posts: 3
    edited November 2018

    Hello Runor and Macb04:

    I am new to the forum.  I read from your postings that you find rowing helpful.   I am an avid rower, so I hope to point out a couple of things that may help with your rowing, to prevent injuries:

    (1)  If you are using a Concept 2 Rowing machine, there is a damper setting on the side.  Try to set it to 3 - 4 instead of a 10.  If you look up Concept2 Damper setting on the internet it'll explain more.

    (2)  please look up YouTube:  there are many videos re: the correct technique when using a rowing machine.  (I would be happy to explain, but I think looking at a video and hearing the pros talk about it would be a lot clearer).

    Hope you both are feeling better since the 2017 post.


  • macb04
    macb04 Member Posts: 1,433
    edited November 2018

    Hi MsStoic, I took a rowing class which is where I was initially introduced to the Concept 2 Rower. They showed us the correct form, corrected us till we achieved it too. Thanks for the reminder that good form is integral to staying injury free.

  • macb04
    macb04 Member Posts: 1,433
    edited November 2018

    Hi MsStoic, I took a rowing class which is where I was initially introduced to the Concept 2 Rower. They showed us the correct form, corrected us till we achieved it too. Thanks for the reminder that good form is integral to staying injury free

    There are a bunch of rads related problems that never go away, like the tightness in my arm/shoulder and the gurgling of my L (fried by moron radiologist) Lung. I don't even want to think about what they have done to my heart, even with that nearly useless breathhold "technique. I do as well as I can, but resent the dishonesty of those people at scca. I am sure they have bad Karma coming for them someday.

  • MsStoic
    MsStoic Member Posts: 3
    edited December 2018

    Hello Macb04:

    Glad you learned the proper erg technique.

    I am sorry to hear of all the side/remaining effects from your rad.  I hope for you that one day they will go away....I will be meeting with my Rad Onc. in 3 weeks.  

    After reading all the posts on this topic, I realize I don't really know some of the possible problems from radiation.  Even the breastcancer.org website didn't go into some of the side effects you have to deal with.



  • macb04
    macb04 Member Posts: 1,433
    edited December 2018

    MsStoic, I doubt that the creeping tightness will ever stop. I just manage to keep it mostly at bay with Pentoxifylline and Vitamin E, topically, and orally, plus painful stretching several times per week.

    I know now that very few rads docs tell the complete truth about what side effects to expect. They don't tell you in case you decided not to do the rads. Medical paternalism in action. They think they have a right to decide what is ok to live with instead of you.

    They are wrong, the right to full disclosure and choice of treatment is ours, not some fool of an md.

  • edwards750
    edwards750 Member Posts: 3,761
    edited December 2018

    Amen Mac. My MO told me there would be a little burning(hopefully) and fatigue halfway through the treatments. In my case she was right but so many people I know experienced debilitating side effects. I did do my homework about possible side effects but I still had the treatments because frankly I was afraid not to. The techs were fabulous and caring. My experience was a good one so I was blessed.

    I think you do what's best for you period. It's your body and your life. They don't have to deal with the side effects. You do. Your call, not their's.

    Diane

  • macb04
    macb04 Member Posts: 1,433
    edited December 2018

    Thanks Diane, hindsight is 20/20. Wish I hadn't bought the BS from such a famous sounding place like scca.

  • sdianel
    sdianel Member Posts: 49
    edited December 2018

    Hello macb04. I haven't been on the forum for awhile. I have had some other health issues the last year. Wanted to give you an update. I still have lymph-edema but it's much better. Again, thanks to you for your help. As a reminder, I had a lumpectomy and then radiation in May 2017. Had the 5 day dose. Big mistake. I had a severe reaction. (there are certain groups who should NOT have the 5 day accelerated radiation). I finally got an Oncologist (not the one that did my radiation) to admit that she doesn't recommend the accelerated 5 day radiation because of the potential side effects for certain people. 2 weeks after my radiation, I had redness, heat, extreme soreness and all the skin on my breast came off which was extremely painful. Lasted about 3 months! I still have lots of fibrosis but that isn't bothering me so much. I also had severe rib pain for 2 weeks and then got sciatica for 6 weeks. The Oncologist called the rib pain "referred pain" but I did some research and found it was chondritis. I was a long 7 months of agony. I still have lots of inflammation. I did take the Pentoxifylline and vitamin E and it did help. After you recommended PT, I mentioned it to the Nurse Practitioner in the surgeon's office and she said they had a PT dept at the hospital and gave me a referral! The PT showed me how to massage and how to wear the pad properly to help the lymph-edema. That helped a lot!. I can't take ibuprofen so Tylenol is it. Recently, I did some research on inflammation and pain and found CBD. My son-in-law is taking it for his back pain and is off his pain medications most of the time. I recently found a company that makes CBD oil tincture drops and gummies because I can't take the oil caplets because of a blocked liver bile duct. I started the CBD about 10 days ago to help me sleep. Now I fall asleep faster and only wake up for bathroom breaks. It is slowly lessening the arthritic pain in my hip and back. One unexpected benefit is that the redness, heat and soreness in my breast is almost gone. The fibrosis is still there. I hope it eventually reduces the inflammation in my body. I wanted to check in and thank you again for your help and support on this forum. You gave me lots of helpful info and got me through a rough time. God Bless. Diane. (Tampa FL).

  • macb04
    macb04 Member Posts: 1,433
    edited December 2018

    Good to hear things are looking up for you Diane (sdianel), thank you for letting me know that the thing like Pentoxifylline and Vitamin E helped. I know lots of helpful things because I suffered through so many problems, myself. It feels a little better to know all that pain wasn't in for nothing. I basically did my own research, because those lazy, useless fools of medicine from scca were no help at all.

    One more thing I would mention is to consider Fat Grafting for improvement in Fibrosis. Even if you don't do it for Reconstruction, it can be extremely helpful in reversing Fibrosis.

    I have heard great things about the CBD too. I am so glad to hear it helps your sleep, as well as your pain so well.

  • macb04
    macb04 Member Posts: 1,433
    edited January 2019

    Are any rads doc offering Pentoxifylline 400mg three times per day and Vitamin E 400IU per capsule three times per day to prevent radiation fibrosis? Do they look at rads related problems and offer no actual help?

  • Vivian4
    Vivian4 Member Posts: 32
    edited February 2019

    I am getting ready for my rads and have been reading this thread with interest. I am so sorry for what you have been through. It is awful. I do have questions and concerns about radiation too--like all of us do. I found the following link useful and thought it may help those new bees--like mysel--who are trying to decide whether to do it or not, and reading this and other similar threads looking for guidance.. Thank you for starting the discussion. Here is the link:

    https://www.radiologyinfo.org/en/info.cfm?pg=breas...


  • Janiepie5
    Janiepie5 Member Posts: 3
    edited February 2019

    I know how you feel! I also wish I had never done radiation. I was told it was my choice. I feel I made ghe wrong choice. 22 sessions, the last five directly to the tumor bed. No broken skin during treatment but now, 11 days after, I am wrapped up in dressings and bandages with three open wounds and seeing nurses twice daily for cleaning of wounds and more bandaging. I am so discouraged and depressed. Hoping for no infection and doing Vit E and Vit C to help new skin grow. Noone told me this would happen. Minimized the skin burns. I wish I had walked away

  • Janiepie5
    Janiepie5 Member Posts: 3
    edited February 2019

    How much Vit E are u taking

  • DeeBB
    DeeBB Member Posts: 85
    edited February 2019

    Vivian4 - My last radiation treatment was 01/02/2019, I had 22 treatments Monday - Friday and my last 4 were boost. I am fair skinned, I did burn but was not too bad and then peeled. My RO prescribed a Triamcinolone acetonide, top 0.1 % Cream (gram) and she also had me order Oronine H Ointment - 100 grams (Solstice). She also suggested green tea. I would put the green tea in a small container with a good lid and add hot water (it would cool for the most part by the time my treatment was done). Before getting dressed I would dab the green tea bag on my breast then put on the Triamcinolone Acetonide. At night before going to bed I would do the same thing with the green tea and then apply the Oronine H Ointment. I really believe this made the world of difference. The green tea helps with inflammation also. I continued to apply the Oronine H Ointment after treatment as well. Hope this is helpful.

  • macb04
    macb04 Member Posts: 1,433
    edited March 2019

    Hi Vivian and Janie and Dee. I started this thread to put the real toll of rads damage out there . I know not everyone suffers as badly as I did, but boy, do I still have tightness creeping up on my arm. And like Janie said, they never told me a thing about the endless consequences. I trusted them, and in hindsight, I should have told them to f*ck off.


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

    They didn’t tell me either and I had 33 radiation treatments but I was blessed because I didnt have any side effects except a bit of burning and fatigue halfway through the treatments.

    OMG you ladies have suffered from the treatment. I did my own homework about short term and long term effects and the techs I had were awesome with their advice and compassion so I was braced for the worst.

    I think we do get sucked into their so called compulsory treatments. For me I was determined to do radiation because I dodged chemo. I was so relieved I didn’t think twice about doing radiation. Probably just as well I didn’t know.

    I do think the medical community is getting a wake up call from BC patients in particular about being our own advocates and daring to NOT do what they recommend. Some of them take it as a personal affront to their inflated egos.

    What really irritates me is their blasé attitude when we do complain about the side effects. It’s like we just need to deal with it because the alternative is worse. I would like a front row seat to watch them handle it if they had to endure what we have and do.

    I know a number of ladies who refused treatments only to have the doctor or nurse berate them for it. That’s some serious gall.

    Diane


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

    I feel like they seemed to fuel the flames of my fear. They just treat everyone the same, standard of care. I was told by my surgeon there was no option. If he did the lumpectomy I would be compelled to do the radiation. The idea of no control over my treatment almost pushed me over the edge.

    I am still suffering PTSD from the whole treatment.

  • macb04
    macb04 Member Posts: 1,433
    edited March 2019

    You are right Diane and Meow13, they did browbeat me.. I had everyone from family members to doctors hounding me mercilessly to do that evil rad sh*t. I am so traumatized by the entire awful experience.

    I could barely stay in the chair to have my teeth cleaned the other day. The dentist was really dense, asking what in particular was bothering me. I said EVERYTHING! I said I was tortured and abused by the bc industry. She didn't want to hear that, so she finally shut up. When you have had awful, painful things done to you over, and over, and OVER. Is it any wonder I freak out now at the dentist?

    It's that you don't know how bad the pain will get, and you are waiting and worrying it will be more than you can stand.

  • cassiecanada
    cassiecanada Member Posts: 166
    edited April 2019

    Hi April

    I have to decide soon as to do partial

    or full breast radiation. I cant decide.

    i am an excellent candidate apparently

    but fear a recurrence in the unradiated

    section of breast. plus, i may not tolerate femara

    and that could leave me unprotected if

    i had done partial??

    was your clinical trial contingent upon you

    agreeing to femara?...like, was that

    a necessary component of trial

    or optional....how is femara?... have you

    had any issues since your lumpectomy?

    also- did they ever explain to you

    the likelihood of cells migrating or

    being in unirradiated breast?

    i wonder why whole breast is considered

    standard of care othetwise.

    sorry for all these questions- i just cant get

    much info on this

    thx for any help

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