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23 Year Suvivor Here - ER visit - even more new symptoms and no answers

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Sigh. Same old story. New symptoms, heavy duty symptoms, drive to the Emergency room, wait for hours, doctor looks at me like I'm nuts with symptoms, they take xrays and come back with new attitude after seeing them but NO ANSWERS.

Finding of these last xrays was NOTHING, as usual, but then why am I having a new horrific centralized pain on the side of my thigh? The pain is about a week old, comes and goes with hours of pain when it recurs. Pain is so bad I get nauseous and no pain med helps. I can't believe it's my fibromyalgia and the ER doctor said that it could be a bleed from blood thinners but he doesn't see signs of it or it could be even 'fat necrosis'. There is a word you don't like seeing in a diagnosis 'necrosis'. YIKES. Anywho he let me go with a prescription for a biggy pain killer and the usual 'if it gets worse' get your butt back in here advice. You guys are familiar with that. Well that was a waste of a day. Sigh.

I am in Canada and we don't have late effects clinics so I am trying to go through our big cancer hospital in Toronto to see if they can find someone to help me but I guess this is just the last straw of the whole 'eye rolling' looks of doctors when I present with symptoms which, over the years, have all come out to validation by the medical community but til they catch up with symptoms I report I have to put up with this invalidation and it's getting old. I came to this site section of long term survivors cause so many of you know exactly how it goes.

My family doctor who I have had for years seems kind of sick of me and that is really contributing to this feeling of abandonment of my health situation and invalidation. I can not have a mammogram, ever since my first cancer treatments, due to excrutiating pain even at the start of the test and since I have been radiated like crazy I am at higher risk of breast cancer. Anywho I had requested ultrasounds instead and in the past years I was successful in getting them. All of a sudden my doc sends in a request to women's breast screening and it's turned down. WHATTTTTTTTTTT???

So I spend 2 whole days calling everyone here where I live and in Toronto to try to get help in getting an ultrasound only to find out after talking to about a dozen or more people in breast cancer screening that they have decided to let me have the ultrasound (GEE THANKS, SHEEESH), AND I find out that the reason they wouldn't give it to me wasn't what looked like the system putting more restrictions on who could get an ultrasound over a mammogram, they tell me my own GP didn't send back their requests for more detailed reasons as to why I need one. WHATTTTTTTTTTTTTTTTTTT???? No time I guess to report all the reasons. I was crushed.

Anywho, as many of us long term survivors soon realize, we are on our own - advocating for our own health care til we get it. I did. But, I was totally stressed out and upset in so doing. Ridiculous. Sound familiar long term survivors out there?

When the screening program called to argue out why they weren't giving the ultrasound to me it was said that I had to understand that first priorities are given to women who already had lumps in their breasts and I told them I understood but at the same time I didn't like being told that so that it made me feel as if I wasn't a priority since I was damaged by treatments and harsh ones years ago and without breast screening methods that would help my situtation, not screened for years. I was told it might be months. Why should I be made to beg for help and then spoken to like that and then postponed as if they are doing me a favour? I told them that.

So the next day I get the call from them that yes I would have an ultrasound and it would be the second week of April, that was way earlier than first promised. I guess someone must have thought over what I said.

All could have been avoided by my doctor giving them a few more details. Unreal.

Anywho just one of those humps that many long term survivors must navigate. I'm tired, how about you? I probably sucked in the bubonic plague or something too yet waiting in the ER for as long as I did too. You know, just as a bonus. Sigh. lol.

Blessings,

Bluerose

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

I am so sorry to hear of these experiences you have gone through, lately. Sending you a hug and a prayer.

Lucy

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Blue rose,
I am a 21 year survivor and can totally relate to your experience Bluerose. I have not been feeling well the last 3 months and can not get my pcp to listen and understand. Well today, I found blood blisters on my body that can be a sign of Lymphoma, Multiple myeloma or luekemia. I am slow to call him w/symptoms but when I do, he tells me "these should be the best years of your life, you should not be worrying". When I called my long term effect specialist he said, you know when something is wrong in your body you will be the first to know and we will investigate and explore without using more radiation if possible. It's reassuring but my appointment is in April.
As for you thigh pain, I have had the same. It felt like a tooth ache pain in the thigh or an ice pick in it. I have had it 3 different times so severe, it brought me to my knees. There was no explanation for it and am happy to report I haven't had this pain in over 2 years.
I hope you get some answers, that is all we want, right? Validation that we know something is not right. After all this years, we should be the first to know that something is amiss in our bodies.
All the best to you!

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thank you for your input Cathy. I truly hope that those blisters are nothing more than your system bucking something simple but I know how you feel. You are in my prayers.

You are soooooooooooooooooo lucky to have a long term effects specialist where you are, they will validate you big time. And he is soooooooooo right. We know our bodies best and you should tell your doctor who is trying to guilt you out ' I am trying to live my best life so help me do that by listening to my symptoms and help me with answers and solutions.' That should shut him up for awhile. TAke him in a ton of docments you can get from your late effects specialist about the latest in scientific documentation for long term effects of treatments. Go in and dump it all on his desk and say 'a little light reading for you'. What a turkey. Makes me so mad. As if we don't have enough to worry about then they guilt us out yet, or try to. Don't let them.

About the thigh pain. My pains are in the flesh. Yours too? Mine feels like 10 bad bruises, one on top of the other. I don't know if I mentioned this in my last post but the ER doc mentioned bleeds (from blood thinners which I am on - are you)? Also and the worst scenario is necrosis - death of tissue or fat or whatever the case might be. I have another spot on the same leg that has always felt bruised like this and when I mentioned it to my GP she just kind of looked at me. Sheeesh. I had a million other health issues that seemed more pressing so I didn't persue it but now I know they are the same thing, but no doubt worse cause it wasn't treated - whatever it is.

I go see my GP this week and I will demand further tests on those areas. Xrays showed nothing at the hospital but I want a CT or a PETSCAN although they guard those with their lives here. Sheeesh.

I just fought successfully to get the ultrasound I needed instead of mammography I can't handle due to no doubt nerve damage so that's one battle won but I look like i have been through a battle - takes alot out of me. It shouldn't be that way. In a perfect world eh? Sigh.

All the best to you, I hope all tests turn out okay. Have a word with your late effects specialist about bleeds and necrosis and let me know what he says okay? Did you have total body rads and a bone marrow transplant too? What chemo did you have?

I had non hodgkins lymphoma and an autologus bone marrow transplant, total body rads and had regular CHOP and localized rads abdomen and pelvis at diagnosis. Both treatments were a year and a bit apart.

Blessings,

Bluerose

TJ74's picture
TJ74
Posts: 18
Joined: Aug 2011

Man could we talk. I've got 20 years of stories that I think you will relate to and you to me. I'm done for today. I reply under a pain comment you made. I'm a Canadian too. I'll be back tomorrow.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Start telling those stories because it's through others experiences that we realize that we are not alone, it's not JUST ME and finding validation in so doing. Let her rip. lol. Eager to hear what you are going through.

Blessings,

Bluerose

TJ74's picture
TJ74
Posts: 18
Joined: Aug 2011

Hey Bluerose,

I wrote one story on here and posted it, but it went no-where. It was in regard to yours and others on fatigue and pain. Usually I type up stuff in Word and then paste it, but this time I didn't, dang-it. I spent probably an hour on it. Maybe it was to long... but it's lost. I'll write something again. But thanks for the support. You sound like you have been through allot as well. I have a hard time sometimes talking about my journey cause it is so far from anything that anyone around me can relate to. I have really beat myself up for being so different. I have struggled with self esteem big time and my isolation has distorted my thinking at times. I'm just starting to feel worthy of being heard.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

You aren't going to feel isolated and your self esteem will start the rise up now that you are on this site, I guarantee it because at last you will be heard by others who have 'been there' too and who have had similar experiences - far more similar than you can even fathom right now but you will see.

You are definitely worthy of being heard and don't let anyone tell you otherwise, you know your body best. Post about subjects you need to discuss, as many as you want and someone will doubtlessly chime in.

Blessings,

Bluerose

ron50's picture
ron50
Posts: 1260
Joined: Nov 2001

Sorry mate sounds like a case of same #$%$ different day. I have just had another kidney biopsy just to have my nephrologist tell me "well I know what you haven't got".He was getting biopsies redone under electon microscope. I'm sort of out of remission from the auto immune problems at the moment. Protein loss heading for 2 gramms a day ,neuropathy and arthritis in full flare and inflammation in my lungs. They don't know what to do,arava has caused some serious liver problems that don't want to go away and now I'm back on a building dose of methotrexate. Perhaps we should all donate our bodies to science! now! before we die. I am sure that the only surefire dx test they haven't used on me is an autopsy. I had a skin ca cut off my cheek last month. He assured me it would only be a common basal cell carcinoma. Naturally it was a n uncommon micro nodular basal cell that goes deep and follows the nerves. Fortunately it was early stage bur it took 24 mm to get it all. The joys of immuno-suppressants. I hope the next news I hear from you Rose is all good and that you are pain free ,
Ron.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Ya that isn't going to happen Ron but hopefully there will be something new that comes along that will help a little at least. Ya that day was a fun filled day for sure NOT but we all have those when things just are so 'same chit different day' and after all these years it does get old. Oh well.

Sorry to hear of all your trials. Just wish you could take a break from of this, that we all could and have say one whole month of no pain and no doctors and only fnu, nuf, um, FUN, sorry forgot how to spell that for a minute. lol. Oh, I'm just so derned funny eh? lol.

Anywho I hope things look better for you Ron in the very near future.

All the very best,

Bluerose

mbundgus
Posts: 14
Joined: Nov 2006

was just diagnosed with yet my 4th Cancer. Breast Metastis. Stage 4. My first Cancer was 48 years ago ...

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

OMG, that is the longest survivorship I have come in contact with. Wow. That is totally amazing but what a journey you have had, what a strong person.

I am so sorry to hear about the 4th cancer and coming up on 25 years as a survivor myself I have all of a sudden managed to have a bunch of new specialists and invasive testing from every portal. lol. Surgeries are possible soon, looking at new symptoms here and there and regular tests like a colonoscopy etc but after so long and so much treatment in the past you can't help but wonder about the effects it all has had on the body. I guess you are probably thinking that the cancers are coming from treatments of the past? or no?

No way I am going to try to give you any advice, you have been through it all and then some and then over again. How do you find that after that many recurrances and first diagnosis so long ago you are dealing with this all now?

Blessings,
Bluerose

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

To me you just being here is a positive feeling that there is hope way beyond our exportation of cancer treatment. Yes it may be back again but it is only for another re-match, I had my NPC come back three times in the passed 9 years. It is not easy living with all the bad side affects of treatment but it is better then the other choice. Keeping you in my thoughts and prayers.

Hondo

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

As always hoping that you are doing well and not having too many problems with the side effects.

Hondo

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Back at you Hondo, hope you are doing better, thanks.

Ah, it's one of those times that a ton of specialists has come together in 2 months of more hellish appointments and tests. I have a bunch of invasive testing and surgeries potentially coming up but then again maybe with enough prayers I won't need the surgeries that could be looming. Long story and sometimes you just get sick of going over it eh? This is one of those times but I have had them before and hopefully this too shall pass with positive results.

Take care and thanks for the good wishes Hondo.

Hugs,

Bluerose

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

I just finish my 6 month PET scan, it was ok, the stuff in my nasal passageway did not show anything new, in fact the doctor say it was better than it was 6 months ago. There was a small problem in the Lungs, it showed 4 spots that he was a little concerned about but said he did not believe it was cancer. It looked more like problems with aspiration than anything else, and he want to re-do the PET in 3 or 4 months just to verify.

I wish you well and will keep you in my prayers through all your test, you are a true blessing to have here on CSN and a great friend.

God keep you and protect you while in His workshop.
Hondo

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Sorry to hear about that worrisome report from your doc about the spots on your lungs but wondering if you had pneumonia in the past? I too have a spot area but my docs said it's scar damage from the pneumonias I had during transplant. I hope they were right.

I am scheduled to see a new respirologist soon and I know she will want to do a bronchioscopy, sheeesh, I am so freaked thinking about having that done. They can't put you out for that and that's the only way I have been getting through invasive treatments - too much trauma. Anywho I might have to suffer through, if they can get me there that is, lol.

Do you cough up plugs now and again? I was told by a respirologist years ago that the total body rads I had during transplant burned off the cilia (little hairs along the respiratory tract and in my nose, so the air I breathe in doesn't filter so I get all kinds of infections. I used to be on antibiotics all the time in the first 15 years because of that. I have noticed in the last 5 years though that I have had the cilia in my nose grow back somewhat and it's true, the infections have been much less - air is being filtered again. Just wondered if you have had that experience?

I still cough up plugs (hard mucous thingies) from hell, some of them look like moonstones. lol. You just all of a sudden gag and cough and ta da there it is. Lovely little surprises. lol. Will let you know what this new respirologist says after my appt. I can hardly wait, a new specialist, oh joy. Sigh. lol. You know how that goes.

Anywho hope you are feeling better and all goes well with any further testing or results.

Hugs,

Bluerose

snyderpm
Posts: 37
Joined: Dec 2009

I am sorry for your pain, and that you can't get an answer.  I always find it remarkable, when you have a lot of pain, and doctors don't know what it is from.  I have been having pains in my head for 30 years, around my right temple,mostly, but also across the front of my head and left temple.  I have several types of pain, but the worst is the electrical pain, like  somebody hitting you with a live light cord in your temple.  It doesn't last long but you can have several bouts of it.  I went to several brain doctors and others and no one seemed to know what it was, or gave me a name for it and any treatment. 

Now that Google is such a good search engine, I was able to put in my symptoms and here it comes with all my symptoms, plus blogs with people just like me.  I have Trigeminal Neuraliga (sp)?  Well, I was talking to my chemo PA about my symptoms and was going to tell her what I think I had, and before I could get it out of my mouth she said, "oh, you have Trigeminal Neuraliga, hahaha.  She knew all about it, and agreed that there wasn't much I could do about it that isn't worse that what you already have. 

Anyway, I was thinking about you and wonder did anyone ever mention the Shingles.  If a doctor is not familiar with the shingles, it is almost impossible to diagnose.  Shingles is very, very painful.  I know 3 people who have had it and they said they have never had so much pain.  I don't think it will show up on any ultrasound.  Good luck

 

 

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