Wish I had never,never done rads, DEEP REGRETS

Busgirl, I sent you a private message.

Annette, if your mom was a smoker, then that was definitely what caused the lung cancer. Radiation-induced sarcoma is a distinct diagnosis, different from the vast majority of lung cancers, and would have been conspicuously noted in her charts and discussed with her and any loved ones with whom she shared information. Tobacco (cigs and chewing/snuff) is the one product that, if used as directed, will eventually kill its user, be it from cancer, COPD or heart disease.

As to my back mole, the path report came back “highly atypical, dysplastic but not malignant." It's a stretch to say it was caused by the radiation beam's focal point being at that spot where the table stopped the beam. I don't have the exact diagram of the trajectory of the beams as plotted by my RO and the physicist.

Annette- I have a question for you. Given that you are stage 1 and small size tumor. Why wasn't a lumpectomy being considered? When you do neoadjuvant chemo I immediately thought it's for preceding a lumpectomy. But you have a mastectomy and then radiation? Why it seemed you have a very aggressive treatment. Thanks for sharing.

Things I've learned about radiation:

First, the radiologists and "breast team" don't tell you about all the side effects that can happen from radiation. The form I signed was definitely lacking in explanation of the side effects and missing some and the statistics of occurring.

Second, they didn't give me something in writing to refer to and/or look for following treatment in case a side effect should occur, or what to do if it does.

Third, they aren't knowledgeable about side effects and we have to do the research that they should have already done. In my case seven weeks have been wasted while they figure it out, so far.

Fourth they don't tell you that some side effects can turn up months and years later, even ten years later or more. Radiation is necessary evil or is it? It seems to be from the dark ages. If 250,000 men had to deal with new breast cancer each year, you think better ways would be found? And they wouldn't blow off or belittle the fear, the pain, discomfort, lost work time, extra expenses, lost quality of life from radiation side effects that they do now.

Fifth, radiation can only be used once in each body area. How great is that? Now we get to fear that if the cancer recur or a different one pops up, we have one less recourse.

I regret that I didn't get a second opinion or find a radiologist that was knowledgeable and honest. Mine was very good at denying that symptoms were from radiation as long as she could. At this point I still would have done the radiation, but who knows how I'll feel if worse symptoms and diseases show up. Look out for recurring lymphedema, recurring non-lactating radiation mastitis also known as delayed breast cellulitis (breast inflammation, infection, tissue damage, breast edema), brachial nerve injury, lung scarring, pneumonitis, heart damage (coronary heart disease, pericarditis, heart muscle damage), loss of hair, sweat glands in axilla, radiation induced cancers (leukopenia).

I am so sorry for anyone dealing with bad experiences on their journey. I did a ton of reading and came with a list. My breast surgeon warned the radiologist that he better be on his best game or I would bolt. I listed my concerns and he was shocked how thorough I was. Although he claimed that "these things rarely happen," I pointed out that every step of my journey went outside the bell curve...from diagnosis to final pathology.

I am sure that it is really hard to predict outcomes for each of us since we are all so different but I agree that all the risks should be addressed!

I think my final freak out was when my boss's mom developed lung cancer 20 years after her initial rads. Sometimes, rads are a necessity and we all take treatments that will help keep us alive, but when I read news articles "blaming" women for opting for mastectomy vs. lumpectomy, they clearly do not understand the full picture. (And sadly, some gals will have to have rads even after a mastectomy.) My heart goes out to you all.

Chi, one of the citations that Mac pulled has info that relates to you. It's from a book published in 2003 which as you know makes the info old by the time it's published "http://www.ncbi.nlm.nih.gov/books/NBK13999/

Emphasis mine. Not sure if you picked up on this statement.

Skin Cancer

It has long been recognized that basal cell carcinomas and squamous cell carcinomas (nonmelanotic skin cancer) tend to occur in the same individuals.¹²³ This represents the impact of sun exposure, a shared risk factor. Thus, those who have nonmelanotic skin cancer should undergo regular surveillance for further skin malignancies and should avoid further sun exposure. Individuals with dysplastic nevi may develop multiple cutaneous melanomas and should undergo regular evaluations by experienced clinicians.¹²⁴ Certainly those who survive an initial melanoma are also at elevated risk (> 30-fold according to a recent report) for a second melanoma.¹²⁵

• Ionizing Radiation
• Chemotherapy
• Hodgkin's Disease
• Retinoblastoma
• Acute Lymphocytic Leukemia
• Wilms Tumor
• Pediatric Sarcomas
• Upper Aerodigestive Tract Cancers
• Breast Cancer
• Prostate Cancer
• Testicular Cancer
• Pancreas/Gastric Cancer
• Colorectal Cancer
• Endometrial/Ovarian Cancer
• Skin Cancer

By agreement with the publisher, this book is accessible by the search feature, but cannot be browsed.

Mac and all that had complications of radiation. Sorry.

Mac you pulled some decent studies about complications. Consider doin a science thread "Long term Complications of Radiation and or Chemotherapy". It could be a repository resource for the studies you and others have here with the addition of other studies. The difficulty in a thread like that is in the translation.

I recently did a thread about beta blockers. I have a strong background in beta blockers, thus could facilitate the discussion. Facilitating the radiation discussion would take someone with a strong physists background. But overall, it's a thought. There isn't such a central thread on BCO. Your study on Tamox increasing lung fibrosis in radiation patients was a "no shit" moment.

Please, keep bumping this thread. The phrase "The good, the bad, and the ugly", this is certainly the bad and the ugly of radiation therapy. In my nursing experience I didn't have many patients with breast complications as I was primarily in different units. I did though over the years have lot's of patients with complications post prostate, GI, Genitourinary. It did convince me that if I were to have cancer, radiation was not high on my list of treatments.

I was going for a prophy due to family hx when my BC was found. Mammo failure, but I had a MRI b/c of the sequencing to get approval. Likely wouldn't be here if I wasn't in the pipeline.

The point related to this discussion is radiation wasn't indicated. I didn't have to make a decision. But I would have likely chosen "anything else" b/c of the very negative troubles of patients seen over decades. But truly can't say. I didn't have to cross the decision line..

It's one thing to deal with statistics, it's another thing to deal with the GI bleeder secondary to prostate radiation of x years ago.

You and several mentioned that there should be a place that we can get all the info related to each cancer, treatments, and untoward effects. BCO provides allot. BUT so much is left up to us to research on our own. I have an advantage knowing the lingo, nightmare when others don't. perhaps, leaving things as they are as most treatments have threads related to each where discussion occurs re: problems.

Healthlines is site I've recently started recommending as a source. Previously, it was Mayo, WebMD. But none of them come close to what's been discussed here.

Mac You may not be able to do anything legally now. But all radiation facilities are regulated by an arm of the Nuclear Regulatory Commission(NRC). The facilities have site inspections and accrediting responsibilities. Think about a complaint to them Please, it will do good and put SCCA(sic?) in a position to explain what happened.

Mac. next week HOUND ME. I have a contact at the NRC. Haven't talked to him since 2014. Maybe he's retired or whatever. But it's worth a shot to change things. I can try to pick his brain as to who to contact.

Your not going to believe this, it is so serendipity. After posting here, I had a member contact me about something else. She's a physicist(sic). I told her about this discussion. But it will be awhile before she's available. Surgery upcoming. Can't predict the future, but who would think that when I said we need a physicist(sic), the next person I talk to is one.

Talk about Las Vegas odds.

Hi everyone,

I'm the physicist  mentioned by Sas-Schatzi. I can try explaining certain aspects of radioactivity and radiation, but I'm just a physicist, so I do not know much about the interaction of x-rays used for radiation treatment with biological matter on cellular or molecular level, or how body physiologically reacts to the damage done by radiation. When I looked in the biological response of breast tissues to rads, I noticed a few conflicting papers: some mentioned that rads stimulate the immune response because they injure tissues, and some - that they also suppress immunity over a long period of time. As I remember, they did not observed a meaningful recovery of the immune system over a period of 3-6 months. I have to go on Pubmed and do a good research,  so , please, do not rely on the  info that I just posted.

Also, I was troubled by the fact that rads are prescribed so casually, and looked at numerous posts about self-reported SEs of rads. The picture looks like a classic radiation poisoning even when the treatment is given only to the breast. ROs keep telling that's the treatment is external, and is different from other cases when the internal organs are irradiated. The thing is, no one cancelled laws of physics, and the general mechanism of the interaction of  the x-ray beam with any type of matter (lead of human tissue) produced scattered radiation that goes everywhere. There is no way to avoid it or shield from it. The amount of scattering may not be as much for human tissue as for lead simply because the density of human tissue is much lower, and the probability of interaction of x-ray photons with molecules is not that high (hence the usage of high-intensity beams).

All this needs to be researched, and this is not exactly my area, but I'll do my best  to answer your questions, if any.

What I meant under radiation poisoning is what its known as radiation syndrome or radiation sickness. Nausea and vomiting, dizziness, fatigue, metallic taste, diarrhea, leukopenia, burns to the skin - these are common when the whole body is radiated. It makes sense to me when ROs insist that rads induce mostly the local effects of skin burning, but it bothers me when they dismiss the effects of scattered radiation on the whole body. GI tract is the most sensitive organ, and hence certain people experience the metallic taste because the taste buds are very sensitive to radiation. Lining of the stomach and intestines is also very sensitive, hence diarrhea (bloody diarrhea in case of high doses). Bone marrow also sensitive, hence leukopenia and immune system impairment. If I remember it correctly, radiation affects fast-dividing cells more than others, just like chemo. Hair loss is also taking place at high doses. Now, about doses. A standard dose for the breast is 50 Gray given at in 2 Gray fractions. Gray is energy in joules per 1 kg of mass. Say, if the breast is 0.5 kg it will cumulatively be exposed to the total 25 Joules of energy in 1 joule fractions (50 gray for 1 kg breast is equal to the total of 50 Joules ) . A dose of 2 to 10 Gray over the whole body delivered in a couple of hours is lethal. If the body weight is 75 kg (165 pounds) the total is 150 to 750 Joules (compared to 25-50 Joules locally). You may start feeling the effects of radiation at 1 Gray delivered to the whole body, i.e. 75 Joules for a 165-pound person. In this case, 25 Joules is only tree times less than that, but 50 Joules is quite comparable, and I bet its effect is not negligible. The flaw in these calculations is that the lethal dose is usually delivered within hours, whereas radiation treatment is given in fractions, over the lengthy period of time, giving human body a chance to repair the damage. This damage is two-fold: DNA damage and ionization, or production of ions in the cells. I believe, ionization triggers a cascade of different reactions, none of which I'm qualified to explain.

Below is an excerpt from a Wikipedia entry about radiotherapy. Wiki is a good source because it's usually unbiased. Please refer to the whole entry for references. The only point I would like to make is that even if the breast radiation is local, scattering affects the whole body, and thus all SEs listed below may manifest themselves. Each individual is unique in his/her response to radiation, hence a big range for the lethal dose, and the severity SEs in each case. Why shielding is impractical, I can explain in a separate entry, if somebody is interested.

Radiation therapy

Side effects

Radiation therapy is in itself painless. Many low-dose palliative treatments (for example, radiation therapy to bony metastases) cause minimal or no side effects, although short-term pain flare-up can be experienced in the days following treatment due to oedema compressing nerves in the treated area. Higher doses can cause varying side effects during treatment (acute side effects), in the months or years following treatment (long-term side effects), or after re-treatment (cumulative side effects). The nature, severity, and longevity of side effects depends on the organs that receive the radiation, the treatment itself (type of radiation, dose, fractionation, concurrent chemotherapy), and the patient.

Most side effects are predictable and expected. Side effects from radiation are usually limited to the area of the patient's body that is under treatment.

The main side effects reported are fatigue and skin irritation, like a mild to moderate sun burn. The fatigue often sets in during the middle of a course of treatment and can last for weeks after treatment ends. The irritated skin will heal, but may not be as elastic as it was before.

Acute side effects

Nausea and vomiting

This is not a general side effect of radiation therapy, and mechanistically is associated only with treatment of the stomach or abdomen (which commonly react a few hours after treatment), or with radiation therapy to certain nausea-producing structures in the head during treatment of certain head and neck tumors, most commonly the vestibules of the inner ears.^[As with any distressing treatment, some patients vomit immediately during radiotherapy, or even in anticipation of it, but this is considered a psychological response. Nausea for any reason can be treated with antiemetics.

Damage to the epithelial surfaces

Epithelial surfaces may sustain damage from radiation therapy. Depending on the area being treated, this may include the skin, oral mucosa, pharyngeal, bowel mucosa and ureter. The rates of onset of damage and recovery from it depend upon the turnover rate of epithelial cells. Typically the skin starts to become pink and sore several weeks into treatment. The reaction may become more severe during the treatment and for up to about one week following the end of radiation therapy, and the skin may break down. Although this moist desquamation is uncomfortable, recovery is usually quick. Skin reactions tend to be worse in areas where there are natural folds in the skin, such as underneath the female breast, behind the ear, and in the groin.

Mouth, throat and stomach sores

If the head and neck area is treated, temporary soreness and ulceration commonly occur in the mouth and throat. If severe, this can affect swallowing, and the patient may need painkillers and nutritional support/food supplements. The esophagus can also become sore if it is treated directly, or if, as commonly occurs, it receives a dose of collateral radiation during treatment of lung cancer. When treating liver malignancies and metastases, it is possible for collateral radiation to cause gastric, stomach or duodenal ulcers This collateral radiation is commonly caused by non-targeted delivery (reflux) of the radioactive agents being infused. Methods, techniques and devices are available to lower the occurrence of this type of adverse side effect.

Intestinal discomfort

The lower bowel may be treated directly with radiation (treatment of rectal or anal cancer) or be exposed by radiation therapy to other pelvic structures (prostate, bladder, female genital tract). Typical symptoms are soreness, diarrhoea, and nausea.

Swelling

As part of the general inflammation that occurs, swelling of soft tissues may cause problems during radiation therapy. This is a concern during treatment of brain tumors and brain metastases, especially where there is pre-existing raised intracranial pressure or where the tumor is causing near-total obstruction of a lumen (e.g., trachea or main bronchus). Surgical intervention may be considered prior to treatment with radiation. If surgery is deemed unnecessary or inappropriate, the patient may receive steroids during radiation therapy to reduce swelling.

Infertility

The gonads (ovaries and testicles) are very sensitive to radiation. They may be unable to produce gametes following direct exposure to most normal treatment doses of radiation. Treatment planning for all body sites is designed to minimize, if not completely exclude dose to the gonads if they are not the primary area of treatment. Infertility can be efficiently avoided by sparing at least one gonad from radiation.

Late side effects

Late side effects occur months to years after treatment and are generally limited to the area that has been treated. They are often due to damage of blood vessels and connective tissue cells. Many late effects are reduced by fractionating treatment into smaller parts.

Fibrosis

Tissues which have been irradiated tend to become less elastic over time due to a diffuse scarring process.

Epilation

Epilation (hair loss) may occur on any hair bearing skin with doses above 1 Gy. It only occurs within the radiation field/s. Hair loss may be permanent with a single dose of 10 Gy, but if the dose is fractionated permanent hair loss may not occur until dose exceeds 45 Gy.

Dryness

The salivary glands and tear glands have a radiation tolerance of about 30 Gy in 2 Gy fractions, a dose which is exceeded by most radical head and neck cancer treatments. Dry mouth (xerostomia) and dry eyes (xerophthalmia) can become irritating long-term problems and severely reduce the patient's quality of life. Similarly, sweat glands in treated skin (such as the armpit) tend to stop working, and the naturally moist vaginal mucosa is often dry following pelvic irradiation.

Lymphedema

Lymphedema, a condition of localized fluid retention and tissue swelling, can result from damage to the lymphatic system sustained during radiation therapy. It is the most commonly reported complication in breast radiation therapy patients who receive adjuvant axillary radiotherapy following surgery to clear the axillary lymph nodes .

Cancer

Radiation is a potential cause of cancer, and secondary malignancies are seen in a very small minority of patients – usually less than 1/1000. It usually occurs 20 – 30 years following treatment, although some haematological malignancies may develop within 5 – 10 years. In the vast majority of cases, this risk is greatly outweighed by the reduction in risk conferred by treating the primary cancer. The cancer occurs within the treated area of the patient.

Heart disease

Radiation has potentially excess risk of death from heart disease seen after some past breast cancer RT regimens.

Cognitive decline

In cases of radiation applied to the head radiation therapy may cause cognitive decline. Cognitive decline was especially apparent in young children, between the ages of 5 to 11. Studies found, for example, that the IQ of 5 year old children declined each year after treatment by several IQ points.

Radiation enteropathy

The gastrointestinal tract can be damaged following abdominal and pelvic radiotherapy. Atrophy, fibrosis and vascular changes produce malabsorption, diarrhea, steatorrhea and bleeding with bile acid diarrhea and vitamin B12 malabsorption commonly found due to ileal involvement. Pelvic radiation disease includes radiation proctitis, producing bleeding, diarrhoea and urgency, and can also cause radiation cystitis when the bladder is affected.

Cumulative side effects

Cumulative effects from this process should not be confused with long-term effects—when short-term effects have disappeared and long-term effects are subclinical, reirradiation can still be problematic.

Effects on reproduction

During the first two weeks after fertilization, radiation therapy is lethal but not teratogenic. High doses of radiation during pregnancy induce anomalies, impaired growth and intellectual disability, and there may be an increased risk of childhood leukemia and other tumours in the offspring.

In males previously having undergone radiotherapy, there appears to be no increase in genetic defects or congenital malformations in their children conceived after therapy.However, the use of assisted reproductive technologies and micromanipulation techniques might increase this risk.

Effects on pituitary system

Hypopituitarism commonly develops after radiation therapy for sellar and parasellar neoplasms, extrasellar brain tumours, head and neck tumours, and following whole body irradiation for systemic malignancies.Radiation-induced hypopituitarism mainly affects growth hormone and gonadal hormones.In contrast, adrenocorticotrophic hormone (ACTH) and thyroid stimulating hormone (TSH) deficiencies are the least common among people with radiation-induced hypopituitarism.Changes in prolactin-secretion is usually mild, and vasopressin deficiency appears to be very rare as a consequence of radiation.

I had radiation in 2008, I was burned and sore and very tired. The effects were not horrific but I would not do it again. My cancer came back and they cannot do radiation again, I didn't know that, plus the changes in my breast continued for years

Why radiation treatment?

It's an experimental fact that radiation decreases the local recurrence rates for several years after the treatment. There are several studies that show 50% decrease in the recurrence rates for DCIS; I haven't looked at IDC or ILC cases. I haven't seen too many papers describing why 50%, it's just an experimental fact. The mechanism may be killing off a significant number of cancer cells (all cannot be killed because of the low probability of interaction, but a significant number can be damaged. The damaged cancer cells a diminished capacity for repair. The immune system may then take care of the ones that were not hit by radiation) and/or the immune response to trauma to the tissues. This 50% rate was found experimentally, by comparing the number of recurrences in cases treated with and without rads. If the recurrence rate is low, say 2%, it decreases it (mathematically) to 1%, which is not statistically significant. If the recurrence rate is estimated to be about 60% (6 out of 10 chance) , then the decrease to 30% (3 out of 10 chance) may be meaningful ( although it is always nice to know the uncertainty range). All these percentages are statistical, and mean very little when it comes to each specific case. We are unique individuals, although doctors treat us as part of statistics.

According to Wikipedia, "the effect of radiotherapy on control of cancer has been shown to be limited to the first five years after surgery, particularly for breast cancer. The difference between breast cancer recurrence in patients who receive radiotherapy vs. those who don't is seen mostly in the first 2–3 years and no difference is seen after 5 years.^[6] This is explained in detail here".

Macb04 thank you for starting this thread; you have dared to question. And wow Dragonsnake -- a scientist reviewing studies is so much different than the rest of us doing it. Keep up the good work of finding and sharing; it is very helpful.

The most important thing about this thread is what I have learned through my cancer and the rest of my health problem journeys: DOCTORS DO NOT OWN YOUR BODY. YOU OWN YOUR BODY.

I put that in caps because we all have a tendency to go "Well, this is what I have to do, the doctor said so." "I have to have radiation now." "I have to have this treatment now." Even if you choose to do so, we all need to realize that we have been offered choices, and we are making choices. We do not HAVE TO do anything. It is a fine point but such an important one.

To someone who might answer that with: "Well I have to if I want to live!" I beg to differ: doctors do not have a crystal ball; they are not all-knowing beings; they are not psychic. They do NOT know more than you do on a permanent basis. They went to medical school, they know how to diagnose things based on literature and what they have seen clinically, they know the treatments to offer based on statistical models; however, you can look at those same statistical models and decide if the side effects would be worth the reduction in risk. As Dragonsnake is pointing out with the studies she is sharing, the statistical models can be looked at from different directions. Just because a bunch of doctors have decided that the stats say something and therefore automatically offer treatment x,y, and z to all patients
"these days" does not mean they are right. The Emperor might have no clothes.

My immediate reaction to being offered radiation was "ummmm no thank you I don't want to put the thing that causes cancer into my body to handle a cancer." I was met with some resistance from my doctors (although I have great doctors and they are nice). I was sent to see the RO for an evaluation after my DCIS diagnosis (and strong family history: mother and aunt; and my gene mutation not BCRA one of the other ones: BARD1). The RO was actually pretty insistent, and told me how they have late hours so I could come before and after work; she made it sound like a gym membership.

Bad health journeys especially bc, are a series of choices and decisions. My right breast continued to grow things after my lumpectomy and refusal of radiation; would it have stopped growing atypia if I'd had radiation? I don't know; I don't care I still would not choose radiation. After my BMX they found LCIS in my left breast that had escaped ALL detection from MRI's, Mammo's, etc. Would that have become ILC before we found it? I think that is more likely; and having radiation on my right breast would not have prevented it.

I would never ever tell someone "don't have radiation!" because I do not have a crystal ball and it is their journey not mine. However, I would say: "You do not 'have to' do anything. You are offered choices; become informed before you decide."

Hi all,

Thank you Dragonsnake and sas-schatzi!

I have a question. I was DXed with IBC, Stage 3B. Did 6 months of neoadjuvant chemo, then a radical mastectomy with ALND, then 6 weeks of radiation. My RO spent 4 hours going over side effects yet urged me to do radiation as IBC involves the skin. Half of my radiation treatments were done with a bolus. I had no skin issues and no apparent side effects other than a slight tan. Okay, here's my question: if I escaped radiation's ugly side effects, why does my RO still see me every 6 months? I'm 2 years past radiation, is it normal for ROs to do what mine is doing?

Thanks for any input.

bride

Thank you all for the kind words. I really appreciate your posts and humbled by you kindness. I'm not a  biologists or medical scientist;  I understand nothing of molecular biology. I can only do my best  explaining  the physics  part of radiation treatment. I believe most treatments offered to us are based on empirical evidence, and haven't changed much during the last decades, with the exception of monoclonal antibodies, like Herceptin (Taxol, platinum, tamoxifen, rads -all these agents were found quite a while ago). So, doctors are continuing doing what was done before, and prefer not to take a risk. It's challenging to find a doctor who treats a patient, not a disease.