Ok, thanks on the age KB - I couldn't remember. I like your hubby!

I am one of those people who had Rads with no real side effects and still posts here. I have made friends on one of the links and we talk about lots of other things other than our ailments. Several of us have even met each other up close and personal.

I was blessed to have a great team of techs and doctors. I had 33 Rads treatments. Redness and fatigue from the Rads but that's pretty much it.

We deserve the best doctors and I wouldn't settle for less. Clearly you need answers. We pay them for their expertise and they better deliver.

I would get a second opinion. Your medical team is way too complacent and indifferent. Not acceptable.

Good luck.

Dian

I don't think anyone goes through rads their entire course without getting red, feeling heat, some swelling and such. That's a given. Just like with chemo feeling like shit to some degree will be a given. Once you are done with rads it does take awhile for things to subside and hopefully go away. As with anything we are doing, who knows if it will work and who knows what se we may have or what may stay with us. We are all so different.

I didn't say it's the same for everyone, hence my we are all different comment. Everything we do is a risk, bottom line- or don't do..

I have tears for what people have gone through and the sometimes futility of this process to remain alive. I quote Runor - "Cancer is not the big picture. Cancer muddies the big picture. Cancer is the trees and not the forest and in the middle of it, we do not think straight. We DO NOT grasp the big picture because the medical community largely also does not grasp the big picture. I hate this. I hate not knowing what to do."

My story is for those with lupus or have lupus-like symptoms or mixed connective tissue disease (MCTD). I hope I can help you know what you might be getting yourself into if no doctor has forewarned you or considered it at all.

My story is different and I am trying to figure out where I am now. I wasn't told that rads were not for lupus patients. Why? Because no one has actually diagnosed lupus though I have lived it since 1994. And though I tested positive for Mixed connective tissue disease in Oct 2016, no one cared to check that fact before sending me to rads because I couldn't breathe properly and could not stop coughing.

First I was undiagnosed with reoccurrence and then the Ibrance stopped working for me and so there were lymph node masses closing off my superior vena cava vein to the heart - the right bronchials to the lung - and two masses of them closing the main airway. Those came on during radiation of the bronchial ones, swiftly and horribly.

I was treated with 5 second zaps twice each day for 15 days then the second for the airway was to the broad basin above the collarbone to reduce the two masses of nodes, huge things. That was 5 second zaps three times for 10 days.

But I had to breathe.

Hindsight is I would have gone on Xeloda months prior to avoid this.

Four days after the first rads started I began to have a different breathing problem when getting into bed, I was gasping and soooo unconfortable from the abdomen and seemed like the front but maybe the back. Soon had to sleep sitting up, still do half the time but getting better it seems some nights.

I did not know but already I was into one hell of a lupus flare induced by the radiation. That became worse and worse. I reported it from the beginning and kept doing so, no one thought it was the rads. ugh By the time the second rads started three weeks from that day, I was unable to lay back on the table without suffering, it was like training to deep sea dive, the panic of no oxygen and it took me a long time to get down and stay down. I asked my tech if I had that before and she said no, I had been fine until she saw me again.

Back tracking, the first rads were done, two weeks were between them and the second rads and I did one cycle of low Xeloda, testing the waters on tolerance. And during that time the flare spiraled into the familiar I have had mayne 20 times in 25 years - Marlar rash on my face was ugly this time and lumpy instead of the usual smooth, (I have photos of both ways on me) the joint pain so I could barely walk or move my arms or even write, the fever daily, hot and cold intolerance huge! the sheer exhaustion, not able to get out of bed even for two weeks, but I did get up and go because we have to keep going. I was shaking from even trying to make dinner and had to let Hubby do it all for awhile. My hands still shake. The short time I was on the deck IN THE SHADE I got a worse flare and learned my lesson, the daytime is not to be trusted after rads if one has lupus, not even the shade.

Now one could blame the Xeloda but I knew what I was living. Lupus flare. The regularlly experienced flare quit after two weeks, just turned off. No explanation. The rads induced whopper that was before also continued.

Except for the breathing. And then the polymyositis started - or became apparent that is what it was - no central strength. *See full definition below, you need to know if you could have lupus. I could not even get a breath to blow my nose, it was hard to breathe. And the constipation (blamed on Xeloda then, but not now) because my intestines have temporarily I hope lost the ability to contract. I commented to my husband, "It is weird that I feel no power to go to the bathroom. I cannot blow my nose right. I can only take three swallows of water and am breathless. I cannot lay down at night now. And I was going through that time when I couldn't use my right shoulder and that was before the regular flare," I said. That was about three weeks past the last rad. It just accumulated. The "regular-type lupus flare" had come and gone while the powerlessness and breathing problem continued.

I saw the RO and he said the breathing problem could be scarring from the first rads on the bronchial. But the deal had been before I started that he did not expect there to be any scarring or problems. But now he thought that could be it. But now I know better.

Nine days ago the pain started that is more of this lupus flare from hell. And how I know I have polymyositis. It started in my abdomen below breast over the liver and spleen areas, tenderness in front on both sides, then around my sides equally. By fifth day it spread up my back. The coughing was unbearable and uncontrollable, so we wanted to blame that. I had a chest xray which was clear. But that reading led to the **next problem.

Today I have pain in the sides, abdomen and back to the bra line - like a terrible sunburn that won't quit and that also feels like I have been beaten across the back. I am waiting for this cycle to end.

**Next problem. Shrinking lung disease with lupus. I have all criteria of this. Dx with COPD, clea lung xray, elevated hemidiaphrams, very low oxygen volumes, dyspnea and orthopynea (both breathless, last when reclining which started with the first rads, remember)

I have the chronic cough still to the point of gagging and cannot eat without coughing. That has been going on for a long time but the cancer placement I had was blamed - now we see it is still there and worse. I choke on food and water and cannot even swallow my saliva quite right.

Shuffled from one doctor to the other - and then this beautiful oncologist that replaced my oncologist (mine went to Alaska to study holistic practices to add to his practice) the new one say with me for an hour going over the overlap of lupus and cancer, he defined it and explained which was which and how to test to see what will help and he got me into a new rheumatologist in a hurry since the last one sucks.

Anyway, I wait for help and for hope. But I would not do the rads again after knowing what I know. I would wait for the Xeloda to work, even if it took two more months for me to breathe right.

I hope this helps someone who does a "lupus" search. I really do.

Diane

*Myositis

Polymyositis is a connective tissue disease that triggers inflammation and muscular weakness. The cause is unknown, but polymyositis is thought to be an autoimmune disorder, possibly triggered by a viral infection of muscle tissue.

The disease is more common in women than men and tends to develop between the ages of 50 to 70 years, although anyone of any age or either sex can be affected. Usually, the muscle weakness develops gradually over the course of a few weeks or months. The inflammation may spread to other areas of the body including the heart.

Since symptoms differ between individuals, polymyositis is hard to diagnose and may be mistaken for muscular dystrophy. In many cases, polymyositis is associated with other autoimmune disorders of connective tissue such as scleroderma, systemic lupus erythematosus, rheumatoid arthritis and Sjogren's syndrome.

The symptoms include: (I insert, we can see how cancer and drugs can overlap so you don't know what you are going through for sure).

The shoulders and hips usually affected first

Muscular weakness

Muscle wastage

Muscle pain

Fatigue

Breathlessness

Swallowing difficulties

Tremors, particularly of the hands

Wide-footed stance and walking style

Clumsiness

Tendency to fall over.

Polymyositis develops gradually over weeks or months. By the time the person experiences symptoms, they have already lost around half of their muscle fibres to the disease. The head, hands and feet are usually untouched by the disease. Difficulties may include:

Profound muscular weakness in affected body parts, such as being unable to lift the arms above shoulder height or lift the head off a pillow

Voice changes, if the muscles of the larynx are affected

Problems with swallowing if the oesophagus is affected, with a tendency to regurgitate food

Peristalsis (the muscular contractions of the bowel) may falter, leading to constipation

In its later stages, abnormal shortening of muscles (contracture).

Thanks MacB - I don't know worse by any means just different and avoidable. if only I had known or been told.

Thyroid shield: I read here on BCO somewhere that they don't use a shield because the radiation can go through the thickness of cement at whatever it's pointed at. That's why some people get redness on their backs. I have lung fibrosis on radiation side (I don't know how much) and thyroid nodules they may or may not be cancerous due to the radiation. There are many studies and articles regarding breast cancer patients are more likely to have thyroid cancer. Apparently the nodules have to be at least 1 cm for Medicare approval of biopsy. Medicare refused to cover the thyroid specialist. Even though one is covered with calcification and if it's "lighting up" with Ultrasound, they don't know. AND two months after radiation I had Delayed Breast Cellulitis (DBC) which caused breast edema/angioedema that required many extra office visits, antibiotics, IBC biopsy, prednisone treatment, and 20 LEPT visits. All because they didn't have a clue. This further aggravation has been going on for over a year now. Still wearing a Jovi-pak (compression device). I didn't get scalded, that I'm grateful for, but I was not informed that the risks may play out for ten years.

update - it is now 9 weeks and breast still red, hot, swollen and painful. Doctor doing nothing. GI doc put me on antibiotics which helped breast but radiologist refused to prescribe them. Tomorrow going to Infectious Disease Nurse Practitioner after insisting something be done or they should tell me what it is and that I'll have to live with it. Radiologist just keeps saying he never sees this! I found many cases online. In 9 weeks other than antibiotics and Silvadine cream when open sores, no diagnosis and only advice now that sores closed up, is moisturizer and take pain meds. Offered hyperbaric chamber again. Since I no longer have open wound don't see how that would help. I do want to say that all my other team members have been awesome. Just not happy with Rad. The office called today to schedule a follow up appt in 6 weeks!! I said no thanks!!

I've been through that a couple times, once in my non rad implant side. Try not to worry. Abx works very well. Just keep an eye on it and if it starts going backwards then let that doc know to try a different abx.

That's a stage IV lady who is having issues with her mets right now. Not saying not to be on the look out, but stage IV are more compromised than the rest of us and have a lot more things that go wrong than other stages in general.

That is true however the way your wrote it sounded like it's highly likely in that person's case and we don't know that. If it were me I'd be immediately scared. I felt it was important to point out that the person who quickly got sepsis is stage IV with other stuff going on as well. One should always be alert esp with this lousy diagnosis.