Wish I had never,never done rads, DEEP REGRETS

macb04 · July 2019

Santabarbarian, from what I have read, it is better to be on Pentoxifylline for a year or longer, or the tightness of radiation fibrosis will just start right back up. I was on it daily for 2 plus years. Things, like my armpit, still need to be stretched/given a hard, slightly painful pull a couple of times per month or I won't be able to raise my arm over my head. That only works if you tolerate Pentoxifylline without problems like I did. Seemingly the only Western thing that I have been able to tolerate.

breast2beast · July 2019

agree

macb04 · July 2019

There was a question about fibrosis. Feels like a creeping, miserable tightness of skin/muscle and all connective tissue. Like you put Saran Wrap around an Apple and decided to Microwave it. With fibrosis everything feels "woody", not quite like a tree, but more like a tough, fibrous plant stem. No give or suppleness. Certainly no stretch.

I remember going for really painful PT. The woman would try to pull apart the glommed together mess that was my chest and axilla, so I could raise my arm fully. Then the next day, it had to all start over again, as if I hadn't stretched my arm in years.

Sometimes the pain of it would involuntarily pull tears out of my eyes. I only got PT twice per week, when in reality, my problem was 7 days per week. I could never do as good a job on my own as the PT, couldn't produce the insane level of traction force necessary to pull apart the fibrotic mess the RO had made.

This went on for almost 2 plus years of hell, until I got to a certain number of Fat Grafting surgeries, plus Hyperbaric Oxygen Therapy sessions for several months, to finally get relief.

macb04 · July 2019

bump

mysticalcity · August 2019

High Marks for Proton-Beam RT in Breast Cancer

https://www.medpagetoday.com/radiology/therapeuticradiology/81859?xid=nl_mpt_DHE_2019-08-29&eun=g1237212d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%202019-08-29&utm_term=NL_Daily_DHE_Active

Women with locally advanced breast cancer requiring regional lymph node irradiation had similar disease control with less toxicity with proton-beam radiation therapy (RT) as compared with historical patients treated with conventional radiotherapy, investigators in a small prospective study reported.

macb04 · September 2019

Thank mystical city for the info. I wish I had never done any rads at all, but if someone wants it, the Proton Beam type sounds slightly less horrible.

I have this spot on my back where I was burnt straight through by the rads that has always ached, never really goes away. They never mentioned they were frying me straight through to my back.

SeattleSunshine · September 2019

Here in Seattle, it is Seattle Cancer Care Alliance. In the top 10 of cancer treatment centers. Great one stop shopping. I am doing a la carte which is more work but more choices

macb04 · September 2019

scca is where christine fang burnt me to a crisp. Burnt me straight through to my back. I absolutely hate those people. They did an unbelievable level of harm to me. She told me about this cream to use to prevent radiation burns, AFTER I was already burnt with open sores.

Then I found out this cream had been on the market for the prior 5 years. 5 YEARS!!! It was sold in the gift shop at Virginia Mason. WTF!

How F*cking Backwards was scca. None of those C' s stand for Caring or Competent in my opinion.

macb04 · October 2019

I was speaking with someone else on a Reconstruction thread about radiation fibrosis. This is treatable, yet her PS was clueless, and just interested solely in another surgery to deal with Capsular Contracture.

If nothing is done about her run away Radiation Fibrosis, then even if they replace her implant, the woodlike, stiffened skin which is lacking circulation, may have trouble healing, and all the same problems may just reoccur again.

The doctors need to educate themselves. Their willful ignorance is harming people like us, who deserve the best care they can give.

marijen · October 2019

Willful ignorance, exactly! Doctors are supposed to have the highest of normal IQs. What is wrong with them?

TB90 · October 2019

I am so sorry you have had such bad experiences and do not understand why experiences are so varied. Is it the Ro’s experience, our individual bodies or our differences in expectations. Whatever it may be, some of us had minimal difficulties. I did get a burn and damn it hurt, but not until my treatments ended. I did not expect that. I had radiation to the chest wall with a bolus. I have had virtually no SE’s since. I wish we all had similar experiences

marijen · October 2019

Yeah, I had bad experience, three years after radiation I have neuropathy (pain all over) and nausea every single day. What was I thinking? Might as well have been nuked! Oh yes I guess I was nuked.

Why do they think this is OK?

mysticalcity · October 2019

I think one big issue is that every facility's equipment is different--there are huge differences in technology and we don't think about that with radiology but it is true--so some facilities have newer and better technology and some may have outdated technology not yet replaced. Also all that equipment needs maintenance to be operating correctly--so your results are dependent not only on your radiation oncology team and the techs, but also the maintenance departments at each facility. All you need is one person not doing a good job and you can get horrible results.

macb04 · October 2019

Not telling me about a Cream to Prevent high grade radiation burns UNTIL AFTER I was BURNED to an excruciating and painful crisp, burnt straight through to my BACK?

Is that an example of outdated equipment, or rather an outdated and CALLOUS disregard for my PAIN? For my SUFFERING?

The radiation techs at scca wrote on my OPEN SORES with a SHARPIE!!!!!!!!!!!!!!!!!!!!

scca is SICK...SICK...SICK

marijen · October 2019

Radiation Induced Neuropathy - years after radiation

https://www.sciencedirect.com/science/article/pii/S0167814012004628

macb04 · October 2019

Thanks Marjen. Another thing they didn't tell us could destroy us after rads.

april1964 · October 2019

... I think it was those five “boosts” of extra strong radiation that damaged my skin... it’s still damaged years later and i doubt it will go back to normal

macb04 · October 2019

I sadly agree, that it can not go completely back to normal. I improved it with Pentoxfylline and Vitamin E/Hyperbaric Oxygen Therapy ( HBOT) and Fat Grafting that was done for my Reconstruction efforts. All of that helped alot but required an immense amout of time/effort and money. My insurance only covered part of that.

I had Rads Fibrosis, so severe that I was in a painful and restrictive strait jacket every day for years. I finally had enough and started looking outside the box. I managed to help myself, but basically impoverished myself, breaking into my Retirement money.

It's not right there is so much denial of the reality of severe permanent damages caused by the cancer industry. The cheap turds in the insurance companies should pay. They thought it was just great to pay for questionable treatments like chemo poisoning and frying the crap out of me. It is an unethical business practice in the extreme.

I shouldn't have had to wreak my future retirement just to decrease my suffering to a managable level.

marijen · October 2019

Here’s another link on radiation induced neuropathy.

https://www.nccn.org/patients/resources/life_with_...

sdianel · October 2019

santabarbarian: Fibrosis is tough tissue like when you put chicken in the microwave too long. Hard tissue not pliable. Mine is also tender. My right breast is still swollen and hard after 2.5 years. It also stills feels warm to the touch. I do have lymph-edema and only one lymph node removed (sentinel). I was on the pentoxifylline and vitamin E for 4 months as prescribed and it did help a tiny bit but I don't really think it was worth it. I just stopped the AI. I couldn't stand the side effects. Knowing all I know now, I would refuse radiation and demand a mastectomy. I told that to the surgeon and RO. The surgeon said I would not have been happy with a mastectomy but I can't see how it would have been worse than what I went through.

sdianel · October 2019

mysticalcity: You are right about the differences in equipment, technicians and maintenance, however I was treated at a renowned Cancer Treatment Center with all the latest technology and technicians and RO's. The other part of the equation is the patient. Everyone is different and many doctors try to paint us all with the same brush. I have the same issue with my primary. After I went through all the terrible side effects, I did some research that I should have done prior to treatment. My bad, but I was so shocked and scared, I just wanted it gone. I am in a fairly small group of people that don't tolerate radiation. There is a list you can readily find online. Age, large breasts, borderline or diabetic among other things. Given that I am in that high risk group, the accelerated radiation would NOT have been a good choice for me. I should have gone the longer route but the RO didn't explain that. AFTER the fact, another RO told me that "she doesn't recommend the 5 day accelerated radiation BECAUSE of the side effects" !!!!! Same cancer center, different RO. I can't take many medications that millions of other people take with no problems, yet every single time I am prescribed a new drug and call my primary to tell him about the side effects, he argues with me. I don't read the side effects before I take the medication for that reason. I take it first and see how it goes. Once I have a side effect, I look it up online. Then I call him to tell him and have the same old argument. Everybody is different. We are NOT all the same. I did read the side effects before my radiation but was hoping that I would be OK. I wasn't. I would never tell anybody else not to have radiation. I would just tell them to be sure that they know what may happen and do some research if they fall into the category that is high risk for terrible side effects. Blessings.

mysticalcity · October 2019

sdianel--totally agree with you on that every patient is totally different and responds differently. However, here in the US we get whatever the standard of care is applied to patients. . and the docs don't want to veer from that. I think part of it is a risk management approach. . that they followed what is SOC and it was team approved by the "tumor board" so they won't be sued. I am so sorry you've had to suffer as a result of that approach. And I have found huge variation in the quality and knowledge of the doctors I have dealt with at one of our esteemed local facilities here. I think they are so busy treating the assembly line of patients they have. . . I often feel like a cog in the wheel.

Soul2Deep · October 2019

sdianel-I will be starting radiation in a few weeks. I am part of a trial where I only get 5 treatments. You say there are certain people who should not do this type of treatment such as borderline diabetes,large breasts, and age. I have all three of these. What other reasons why some woman do not tolerate radiation? Just curious why you think you would have done much better going the standard route. Were you part of a trial as well? Thank you in advance. Beth

macb04 · October 2019

I have to disagree sdianel, about there being a fairly " small group of people"who don't tolerate radiation". There are 18 pages of comments from scores of people on this thread alone dealing with the negative, and intolerable consequences of radiation damage.

There are 15 negative radiation threads on just the first 2 pages of the Radiation Therapy postings. On each of those threads there are a ton of people detailing the awful radiation damages they had unflicted upon them by careless bc industry doctors.

This is a DEEP Regrets post, so no one should be surprised that I am not all joyous and happy to have been burnt to a f*cking crisp from rads. Second worst decision of my life, listening to that clueless RO, christine fang from scca. She was the woman who told me about Miaderm to prevent burns a week after I had open oozing sores all over my chest. If that woman had a brain she would be dangerous

hapa · October 2019

mac, which of the therapies for capsular contracture do you think helped the most? I am set to have fat grafting and have been taking vitamin E to no avail for months now. Was the HBOT effective in your opinon? Did you do these therapies concurrently or one at a time?

macb04 · November 2019

hapa,

Were you taking Pentoxfylline plus Vitamin E or just Vitamin E? I took both, along with HBOT plus Fat Grafting. I literally had months of HBOT, going 4 to 5 days per week. Altogether I had 40 plus sessions HBOT, not really sure how many as I got rid of all that paperwork.

I am not sure I can say which part did the most good, but suspect HBOT contributed alot. It was an insane time commitment, which I wouldn't have had to do if one of the morons of medicine at scca, aka, christine fang, hadn't fried the crap out of me, and literally burnt me to a crisp in scores of areas across my chest and back.

PamPatty · December 2019

I have just about decided to forgo radiation after reading this thread. I was looking for information on radiation's affect if you have had a heart valve replacement, which I just had this past week. I'm supposed to start Wednesday but there is no data I've found, including emailing the valve manufacturer. The replacement valve has a metal cage around a bovine value and it just sounds like I'm looking at a bbq along with recovering from one procedure and jumping into another.

I had a second lumpectomy with clear margins Nov 5th, which probably contributed to the heart issue I was born with.

Any thoughts? Is the risk worth it?

DorothyB · December 2019

PamPatty - have you been able to get any information on how much radiation is predicted to help? What stage was your tumor? What grade? Any lymphvascular invastion? How were lymph nodes? Will you be doing chemo?

edj3 · December 2019

DorothyB has some good questions for you, PamPatty. Totally get your concern and I would be asking a ton of questions myself. But yes, knowing what your specific dx is will help you make an informed decision.

PamPatty · December 2019

I have just been completely overwhelmed and not dealing with my situation emotionally very well having both breast cancer and heart valve issues over the last two month. This morning I saw my Cardiologist and now I may have to have a pacemaker! I will add my bio my friends.

Wish I had never,never done rads, DEEP REGRETS

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