Autoimmune issue?

[Ladyparts]

Hi everyone. It may be a bit off topic, but has anyone had an Anti Nuclear Antibody test that has come back really high? This is a test for autoimmune diseases. My ANA was 2650. A normal reading is under 160.

I have been feeling dreadful for a couple of months, quite flu like and inflamed all over and my bowel is acting up with bouts of constipation, tenderness and burning in the abdomen and lower back. I am seeing a new Dr tomorrow to work out next steps as my regular gp has no idea. My oncologist didn't seem too bothered either, but I am struggling to work and get through the days. It seems that quality of life is last on the list of priorities when you've had cancer treatment! My oncologist basically said that I have to remember not everything is cancer related and I will get other health issues just like anyone else. I feel like a hypochondriac.

I guess I'm asking as I don't know if the bowel thing is related to treatment or something else ie IBD with an autoimmune component. It's only been 1.5 years since chemorad for early cervical cancer and I'm totally over feeling like crap. Things feel very messed up in this poor old body!

[Stilllooking]

No doctor should speak to you like that it’s dreadful. Keep asking questions and hopefully you will get an answer which can help you. Find regards still looking for answers 🥰

[Ladyparts in reply to Stilllooking]

Thank you. I'm hopeful the new gp tomorrow will be able to help me out x

[Blue_Hawaii]

Sorry you are feeling so unwell and struggling to work No you are not a hypochondriac

I myself in was with bowel , bladder issues since I’d had treatment 2008

2018 to 2019 was struggling to work . I was signed of work until Feb this year. Thank goodness now I’m retired. There are days when I still struggle with day to days chores

Having a few tests, one off them was a nuclear test that was in 2019 that’s when I was diagnosed with PRD

Your oncologist should know better

Do not have Macmillan or and cancer support in your area or speaking to Sarah or Sue

They be able too give you advice

Sending you a big hug 🤗 x

[Ladyparts in reply to Blue_Hawaii]

Thank you. I am in South Australia and I have to say that the post treatment care is abysmal here. As far as i know there is no late effects clinic and the term PRD is unheard of!

I'm sorry you've has such a rough time. Its not easy is it? And very difficult for others to understand. I only work 3 days a week and this is getting too much for me.

Take care x

[Blue_Hawaii in reply to Ladyparts]

I was only doing 3 days a week The last I went work, I push myself to go in, then my body hit a break wall, I couldn’t carry on , I asked a my co -worker to drive me home, I’ve not worked since, I was off work until I retired this year

I know how hard it is to get people and medical services to understand

I was lucky Macmillan that put me in touch with PRDA

Are you lucky enough to have cancer support clinic, where you live

Please take care sending you a big hug 🤗 x

[Ladyparts in reply to Blue_Hawaii]

I'm glad you have been able to put the brakes on. It's so difficult to keep going isn't it?

I feel such a huge load on me financially. We are renting and need my income to afford the roof over our head, not to mention the cost of ongoing medical appointments and medications/supplements etc. How on earth do people keep going with this? I feel like the walking dead!!

I guess all we can do is keep putting one foot in front of the other and asking for help x

[Blue_Hawaii in reply to Ladyparts]

I was myself financially struggling at the time I was lucky to get advice from Macmillan financial advisor

Do you have anything like this?

[accidentalcarnivore]

yes my ANA is elevated. The docs queried autoimmune diseases but i really don't have the clinical symptoms of most of them so they are just monitoring. I am fine with that. I was diagnosed with fibromyalgia within 2 years after treatment in 2007 as i felt like i was on fire, extreme fatigue, stiffness in hip and shoulder girdles. I feel i was able to manage the fibro with exercise and diet eventually. I do have arthritic flare ups (osteo) from poor sleep, over exertion or diet but i feel the osteo is not related to cancer treatment. I am 67 and i would expect some osteo in various part of the skeleton. I don't pay much attention to the fibro anymore and would feel i don't really suffer from it as some do. I joined a cognitive behavioural program to help me deal with the mental challenges of the fibro. I feel it helped.

I do feel my digestive system has developed a number of food sensitivities i.e. gluten and that the compromised digestive system can lead to autoimmune disorders of various types. Hope this helps. I know its quite a shock after treatment when our body keeps shifting. I felt for many years like i was in a foreign body, i didn't recognize how it behaved or responded, didn't feel like me. I kept wanting the old me back, my bar was unrealistic. That was a hard pill to swallow. There is no "good as new" place to get to with PRD. The hardest part is that looking ahead is an ever shifting landscape so hard to say "yea! found something that works, or Yea! now i understand what's wrong and what to do.

Having said all this, please know that I wouldn't give up the opportunity of life these last 14 years. And my family is very grateful every day that i persevere with challenges and am present and loving in their lives. And there are solutions and just because we are able to manage one set of symptoms just to be confronted with new or additional ones, still does not take away from the fact that we have over come something. For me, i feel great relief overcoming or minimizing the effect of fibro in my life.

[Ladyparts in reply to accidentalcarnivore]

Thank you for saying this - the constant shifts that you're talking about have really come as a shock to me. Before I was diagnosed with cancer I thought I was a fit, healthy young woman - now I feel like an old car with no doors and the motor hanging out the bottom lol.

In some ways, the 'shifting' is somewhat reassuring in terms of cancer as I feel as though cancer would persist in the same area - I find that the aches and pains tend to move around and come and go - one thing replacing the other. Some of it has a knock on effect ie. inflamed bowel causing muscles to tighten up around it, which then pulls on other tendons, ligaments and muscles, which then causes musculoskeletal issues (like sciatica) etc, sometimes far away from the original site. It's so confusing! I often feel like I've just stepped out of a boxing ring!

It's interesting that you had a fibro diagnosis after treatment. I think that, if ever our bodies were going to struggle, it would be after being effectively poisoned and burned. Yet, I can't get my head around the fact that this could be a thing for me, or that there is some kind of autoimmune response going on in my body. I certainly have many of the symptoms you mentioned - the fatigue is probably the most disabling.

Many thanks for sharing your experience with me and for your kindness and compassion x

[Renee1964]

If your ANA comes back high they must check contin. I have systemic lupus and Reynouds disease which flare up contin. After chemo and rad.