Risk of cancer?

[drz]

Like Jack's saying, "just because you have one bad disease, doesn't mean you can't have others".

Some of the drugs I have taken for treatment for GPA along with high number of x-rays seem suggest an increased risk of various cancers. I was wonder how others handle this risk or monitor their body for any signs of developing cancer.

One of my fears is that any signs of cancer or other new bad disease might be missed and passed off due to my GPA just like many of my first GPA symptoms were dismissed as complications of my diabetes.

Like VDUB said GPA can increase hypochondriasis so how do others balance between being properly vigilant so you don't miss a new bad disease or GPA flare and excessive fear and worry of an hypochondriac.

[Nancy-S]

Balance is a lifelong goal. My advice to anyone is to stay in touch with yourself. We have an inner something, call it spirit, light, intuition, or something else. Listen to it...always.

Its okay to be super vigilant, better safe then sorry. At the same time, we don't want to obsess either. When something seems out of order, look into it, get the answer and move forward. You'll know when to dig deeper. I've heard it and said it over and over, we must be our own advocates. If sometimes it comes across as hypochondriac, that's okay. I'm sure people think that of me right now, and you know what? I don't care. This is my life in question. I want to be here for my kids for a long time.

Keep listening to your body with strength and determination. I believe you'll know when to insist on answers and when to move forward. I would never consider someone in your situation a hypochondriac, you have earned the right to be concerned.

[Nancy-S]

One last thought. I was loaned a book called The Cancer Fighting Kitchen. It has great info on foods known to fight cancer with excellent recipes. My friend called it "The, insert your disease here, Fighting Kitchen". It says it has 150 science-based, nutrient-rich recipes. It helps patients get nutrition during and after chemo. There's something in it called Magic Mineral Broth which you can look up online....its great stuff.

[Thakator]

Hi Nancy - - Just a reminder, please make sure those healthy recipes don't boost one's immune system along the way. Ron

[Al]

....Like VDUB said GPA can increase hypochondriasis so how do others balance between being properly vigilant so you don't miss a new bad disease or GPA flare and excessive fear and worry of an hypochondriac.

Yeah, but how to separate being hypochondriacal from being vigilant--aware of what is happening to your body? Once you have a dire disease, I think you are allowed to have dire thoughts, though maybe it is best to laugh off those dire thoughts with a shrug; WG is terribly risible, come down to it. Yes, many cancers are more likely once the immune system no longer gets the funding, due to other (ANCA) scandals in the department. But what are you going to do? I mean, other than report every anomaly to your main wrangler, who knows, or should know, about the risks of the meds. In all cases, I wouldn't worry about how the doctor is labeling you. He or she is getting paid very well to listen to all your complaints, so you may as well get your money's worth.

Al

[Nancy-S]

Thanks for the reminder, Ron. Do you know of any specifics to watch out for?

[Thakator]

No, I'm no cook but I have heard that mushrooms boost the immune system (as do certain supplements and teas). Probably easy to research though. Good luck, Nancy.

[Sangye]

I have definitely become more hyper-vigilant since dx. The past couple years I've worked hard at reeling it in and being willing to just wait and see when something new crops up. Jack taught me that, actually.

A lot of symptoms appear and disappear on their own. A lot of symptoms seem to constantly change but when I look at them over time they're really not getting worse, just sort of cycling. For example my shins and backs of my calves are bright red and hot. I mean REALLY red and hot. It has freaked out many a doctor for over 5 years now. I used to freak out more on the days when they were redder and hotter. There is no explanation for it. And now that I've just watched them I notice that they aren't changing over time. Some days they're worse, some days better.

I'm learning to take the attitude of a mother watching her 6th child play-- watchful but not leaping up at every fall.

[delorisdoe]

I'm learning to take the attitude of a mother watching her 6th child play-- watchful but not leaping up at every fall..


LOL I like that. I babysat for a lady that had 6 children and that is a great comparison.

[Dirty Don]

I'm learning to take the attitude of a mother watching her 6th child play-- watchful but not leaping up at every fall.

Well put, excellent attitude! Only problem is when I leap up, I fall down sometimes, so best to be careful and patient!

[Dryhill]

Well put, excellent attitude! Only problem is when I leap up, I fall down sometimes, so best to be careful and patient!

Leap up what is that ............ oh yes now I remember it something I used to be able to do before I got aches and pains! :tongue1:

Jim

[Lightwarrior]

Well put, excellent attitude! Only problem is when I leap up, I fall down sometimes, so best to be careful and patient!

Do be careful leaping Don, remember the pred can cause muscles to rupture easier :lol:

[Al]

Ah, yes; it's all about gravity, don't you know.

Al

[Dirty Don]

I was only 'leaping' metaphorically! LOL...but a leap is a leap, no matter the distance, the textures, the landings...sighs...again...but as long one is willing to leap...who knows...

[Al]

I was only 'leaping' metaphorically! LOL...but a leap is a leap, no matter the distance, the textures, the landings...sighs...again...but as long one is willing to leap...who knows...
So...tell us, Don: Just how high is "up", anyway...?

[freakyschizogirl]

I have definitely become more hyper-vigilant since dx. The past couple years I've worked hard at reeling it in and being willing to just wait and see when something new crops up. Jack taught me that, actually.

A lot of symptoms appear and disappear on their own. A lot of symptoms seem to constantly change but when I look at them over time they're really not getting worse, just sort of cycling.



I get periods like this where something doesnt feel right - i get an ache, pain, twitch or other and i do worry but i give my body a week or so to sort it out or i do something about it. Although i am a terrible worrier and worry all the time about lots of things.

Luckily these days i have an early warning system for when i'm getting too stressed - i get twitching eyebrows. this never happened pre DX. Very strange but very welcome too - i know when this starts i need to seriously calm down. I've had 2 days of twitching this week but its gone now. whoooo!

[Chris G]

I'm learning to take the attitude of a mother watching her 6th child play-- watchful but not leaping up at every fall.

I love that analogy too Sangye!!

I find that I'm hypersensitive to everything going on in my body. But when something new crops up I try to give it time to see if it shakes itself out, before I panic. If it doesn't then I head for the doctor! And I'm not shy anymore about telling them exactly what's going on, and what I think it is. I won't let anyone treat me like a hypochondriac ever again. I'm going to see my internist next week (about non wg stuff), and I plan to thank her profusely for believing in me, and championing my case, when some so-called specialists said I didn't have wg.

Damn, I've gotten off track again.........regarding the possibilities of cancer. I DO worry about that quite a lot. I don't know what to be on the lookout for. So that aspect scares me more than most.

[Sangye]

Some of the warning signs for cancer: night sweats, unexplained weight gain/loss, changes in moles/freckles, loss of appetite, bone pain, nighttime pain.

Of course most of those can happen with Wegs or are side effects of our drugs. But they're good to keep in mind and to bring up to your doctor if they appear.

[Chris G]

Those are helpful. Thanks Sangye. Night sweats come when I'm flaring, so I'll have to leave that one the "don't panic" column.

[Lightwarrior]

Those are helpful. Thanks Sangye. Night sweats come when I'm flaring, so I'll have to leave that one the "don't panic" column.

I pretty much can expect night sweats whether I'm flaring or not. I also get night sweats in the daytime if I try to cook, or wash clothes or do any type of physical activity. I do seem to be able to ride all over the hospital and town on my handy dandy scooter without any side effects, except for people moving out of my way.

[Sangye]

LOL Lightwarrior, your scooter causes side effects...for the people in your way! :biggrin1:

[KathyB]

Lightwarrior -- I'm glad to hear it's just not me with the sweats during simple physical exertion! Typically, I go about 15 minutes into standing/cooking in the kitchen before they begin! Same with doing laundry, grocery shopping, walking up/down steps, etc. I always make sure to be wearing "peal away" layers of clothing and have a chair close by!

KB

[sue7211]

Interesting discussion! My son has both adult and pediatric doctors. The pediatric ones want to investigate and recheck things immediately. The adult doctors want to watch and wait.

Sue

[Lightwarrior]

LOL Lightwarrior, your scooter causes side effects...for the people in your way! :biggrin1:

All along one hall in my hospital there are pictures of employees, superstars, employees of the month etc. My 8 year old grandaughter Alexis told her mother (my daughter) that these were pictures of all the people I had run over with my scooter. (At 8 she is quite the smart alec, can't imagine where she gets it from) LOL

[Al]

All along one hall in my hospital there are pictures of employees, superstars, employees of the month etc. My 8 year old grandaughter Alexis told her mother (my daughter) that these were pictures of all the people I had run over with my scooter. (At 8 she is quite the smart alec, can't imagine where she gets it from) LOL

Hah! You must have done something right....

Al

[RCOSSIO]

Don't mean to be crass!!!! But why worry, you can sit and ponder about what can and cannot happen and miss everything today. I don't ponder the future, really try to put too mich about what ifs...I live in the "NOW" ....

I am at peace with myself, its hard to explain how I got here, but I am.

[Al]

Don't mean to be crass!!!! But why worry, you can sit and ponder about what can and cannot happen and miss everything today. I don't ponder the future, really try to put too mich about what ifs...I live in the "NOW" ....

I am at peace with myself, its hard to explain how I got here, but I am.

It's not crass, Richard. In fact, it is a good idea to revel in the NOW. Yet, it is also important for Weggies to have a sense that there is a future, and that it includes us. This is not a matter of bemoaning what coulda-woulda-shoulda been, but rather, I thing, exalting in the possibilities of an unknown arc through the universe.

Al

[Sangye]

All along one hall in my hospital there are pictures of employees, superstars, employees of the month etc. My 8 year old grandaughter Alexis told her mother (my daughter) that these were pictures of all the people I had run over with my scooter. (At 8 she is quite the smart alec, can't imagine where she gets it from) LOL
ROTFL!! What a hoot. http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com)

[RCOSSIO]

Good point...Al :biggrin1:

[me2]

All along one hall in my hospital there are pictures of employees, superstars, employees of the month etc. My 8 year old grandaughter Alexis told her mother (my daughter) that these were pictures of all the people I had run over with my scooter. (At 8 she is quite the smart alec, can't imagine where she gets it from) LOL

Ha, thats great. Gracie Allen has re-incarnated.

[drz]

Warning: Whine mode on:

Got some reassurance that the mass and lumps in my arm pits and breast do not appear to be cancer or at least any type of cancer that they recognize. They gave me several reasons why they don't think it is breast cancer or lymphoma which was nice to hear. BUT they also had no diagnosis to explain what these masses and lumps are, what caused them, or why they hurt, especially when they push on them. And they didn't seem interested in trying to find out or suggest any referral to someone else who might have more knowledge about such symptoms and some answers.

I felt frustrated as it reminded me of the years I spent searching for answers to my roving joint pains, nasal crusting, fatigue, weight loss, and other symptoms before Wegs almost killed me. No one had any answers then either as to why the pain. No one offered any effective relief for these symptoms, just did tests and exams to rule out what they weren't.

I think the most frustrating part is no one that I have seen close to home appears to have any interest either in finding any answers, just like it was with Wegs. I don't think these symptoms are typical for GPA and don't know if they are side effect of my treatments, but feel I will have to consult with those specialists at larger clinics to see if I can get a referral to someone there who may try a little harder get some answers for a diagnosis and treatment plan instead of just saying I don't know what is wrong but we can re-check you again in three months anyway to see if it gets worse or turns into something we recognize and know how to treat. I did let them know that wasn't helping me much with current pain even though it might reduce my anxiety a little, only a little cause I know too many people who have died from failures of medical staff to recognize their medical problems in time to offer effective treatment,

[mishb]

drz, I don't know what your lumps are like but I'm so sorry you have to go through all of this.

I also have lumps in my breasts but I have had them pre diagnosis (2009) and they did a biopsy and thankfully they were not cancerous, but they are tender to the touch or very sore when the doctor pushes on them.

I actually had an ultrasound 2 weeks ago (just as a follow up) and they found 12 more lumps in my breasts and 3 under my armpits....I think at last count was 21 in one breast and about 15 in the other.

My GP tells me that they don't need to biopsy any of them this time because they would still be non cancerous and are only fibroadenoma's and are nothing to worry about. (This is the same doctor that kept me hanging around for over a year without sending me to a specialist, so I do worry about her response)

I'm no longer seeing Oncology since they ruled out any lymphoma's or blood cancers in November last year, so maybe I will just mention it to my Rheumy when I see her in March......just to be on the safe side.

I hope you can find someone to give you some answers soon drz.

Take care of yourself and ............

[Sangye]

drz, they are most likely due to the hormone changes caused by pred. I suggest you see a naturopath about getting hormone levels tested via saliva sample, and possibly using progesterone cream. The most likely hormone imbalance is estrogen dominance (men get this also), which left unchecked can lead to cancer. That's one of the causes for the huge increase in women with breast cancer.

[Al]

drz, they are most likely due to the hormone changes caused by pred. I suggest you see a naturopath about getting hormone levels tested via saliva sample, and possibly using progesterone cream. The most likely hormone imbalance is estrogen dominance (men get this also), which left unchecked can lead to cancer. That's one of the causes for the huge increase in women with breast cancer.
Great call, Sangye. To this, I would add only that other drugs and physical activitty (or lack of it) can also affect hormone balances. But the pred is surely the most likely culprit. And, as you note, that non-malignant growths can and do sometimes become malignant, so it is important to keep an eye on them.

Al

Al

[Lightwarrior]

drz, they are most likely due to the hormone changes caused by pred. I suggest you see a naturopath about getting hormone levels tested via saliva sample, and possibly using progesterone cream. The most likely hormone imbalance is estrogen dominance (men get this also), which left unchecked can lead to cancer. That's one of the causes for the huge increase in women with breast cancer.

drz, before I started tx for Wegs I had nodules through-out my lungs and in my breast. I also had swollen lymph nodes. They cleared with treatment

[Psyborg]

Sorry to hear your having problems DRZ. I hope they can find the cause for you soon...will keep you in my prayers.

[Sangye]

And, as you note, that non-malignant growths can and do sometimes become malignant, so it is important to keep an eye on them.

Al

Al
It's not that the actual lumps are more prone to become cancerous, but that the underlying hormone imbalance sets the stage for the body to develop cancer. I just wanted to clarify that.

[marta]

drz, I'm sorry to hear that you're having one of those frustrating moments of dealing with the medical system. I can so relate. I ended up crying this week at our health clinic because there was something pretty serious and they just kinda threw up their hands and said, 'well, that's all we can do'. I was so frustrated and started to tear up, I think I might have stomped my foot afterwards when I said "no, you don't get it, this can kill me and I need you to do something". I wasn't going to go until I had some sort of resolution, but apparently tears seem to move people into action. I am not one to cry. I think I've cried less than a handful of times since the beast and I met, but I find it so, SO frustrating having to battle with the people who are supposed to have our best interest and are the professional health care practitioners. It's such an energy drainer and we have limited spoons as you all know. I was wiped after that event on Monday. I've been going back every day and today I can say that I think I have the solution I wanted. I'm still not out of the woods, but we're moving forward in a positive direction and now it's just a matter of crossing some fingers.

As usual I'm going on and on to try and make a simple point. My point - question authority, do what you feel comfortable with while being assertive in getting the answers you need. I know that this disease has really taught me to go beyond my normal comfort level in demanding (in a very polite and respectful way) that I be treated like a human being and not just another 'case'. I have a family that I love and loves me, just like the doctor who is treating me - and sometimes I have to remind them of that. So do what you have to to get your answers. It will aleviate the associated stress and bring back the quality of life you're accustomed to. In the meantime (and afterwards of course) you'll be in my thoughts and I'm sending you all the white, healing light I can muster. Take care friend.

marta