Update - Concerned
Sooooo, I am hoping that I am wasting my time worrying about nothing but...about a year ago my oncologist found me to be woefully anemic. My ferritin (back-up iron) levels were 3. So I had a colonoscopy and and endoscopy to try to find a bleed and nothing was found. My oncologist then gave me 5 iron infusions and sent me on my way. Well it is a year later and he tells me that I am anemic again but not only that my red blood cells are small in size (but still in the range of normal) and there is a low number of them. Now, according to him, this can be the result of a bleed. So, I am going to swallow a little capsule camera (cool!) and it will check my entire GI tract (plus the areas the endoscopy and colonoscopy can't see) to try to find the bleed. I did something really stupid and jumped on the internet and saw that I could have MDS or Aplastic anemia. Both of which are serious and both of which can be caused by chemo (specifically, the chemo I took). I know that this is not a probability only a possibility but I am definitely worried. He said he will call me in a couple of days with my ferritin results and we'll discuss where we go from here. If I could type expletives here there would be a string of them that would make a sailor blush. Ugh!
Comments
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Anemia
I was diagnosed with Anemia during and after my chemo....actually have been a little anemic most of my life. Let's think POSITIVE about this one and just know that it is going to get better...not worse. It sounds like you and your doctor are on top of it and that he will work out a good treatment plan for you ... I hope you will try to let go of the worry bug........it just adds to the stress of all the other things you have to deal with. I use the Serenity Prayer and also John 14:27.............
Let us know what the tests show though....rooting for you that they are going to be ok 0 -
WE ALL WORRY
Clementine, You are not doing anything wrong about worrying. Everybody on this website has worried 1 time or more. I still worry after the doctor told me in May I was cancer free. I am high risk of my BC returning. I think about it almost 24/7. I have even had dreams about it. What I cannot understand that the ONC s tells everyone they are cancer free and then puts everyone on a AL or hormonal drug for 5 or 10yrs to keep the cancer from returning. Does that make any since, To me it does not. Hope your worries are over soon and your ONC and you and get things straightened out. I think you need a good hemotogist. ((( HUGSS))) Pixie Dust
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Cancer FreePixie Dust said:WE ALL WORRY
Clementine, You are not doing anything wrong about worrying. Everybody on this website has worried 1 time or more. I still worry after the doctor told me in May I was cancer free. I am high risk of my BC returning. I think about it almost 24/7. I have even had dreams about it. What I cannot understand that the ONC s tells everyone they are cancer free and then puts everyone on a AL or hormonal drug for 5 or 10yrs to keep the cancer from returning. Does that make any since, To me it does not. Hope your worries are over soon and your ONC and you and get things straightened out. I think you need a good hemotogist. ((( HUGSS))) Pixie Dust
Every time I hear that "Cancer Free" thing it just makes me shutter...........because once you have it...you NEVER KNOW...when or if it will return. And nobody said it was "Wrong" to worry....but I will tell you this much.........it is USELESS to Worry.......let it go as much as you can.......move forward and live your life as best you can EACH DAY girls...........do what you can as best you can....and KEEP BREATHING...AND FIGHTING....as long as you can. Love and Prayers to All....
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I'm with you on "cancer free" terminologyGlowMore said:Cancer Free
Every time I hear that "Cancer Free" thing it just makes me shutter...........because once you have it...you NEVER KNOW...when or if it will return. And nobody said it was "Wrong" to worry....but I will tell you this much.........it is USELESS to Worry.......let it go as much as you can.......move forward and live your life as best you can EACH DAY girls...........do what you can as best you can....and KEEP BREATHING...AND FIGHTING....as long as you can. Love and Prayers to All....
My onc informed me at the start of my journey 4 years ago, that he will never tell me that I am cancer free...just NED "no evidence of disease". I have told this to my family who "poo poos" me thinking I just want sympathy. No that isn't what I am looking for, but for us survivors, we must be always vigilant as this disease is particularly nasty in rearing it's head in so many different ways. I am working on not worrying, but that is so much easier said than done since I have always been a worrier (I think that I inherited this trait it from my mom).
Hugs to all.
JoAnn
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We can't live that way
I agree with everything you are all saying. Of course we all worry and I agree that "cancer free" is not correct and we should stick with NED. I have made a decision to not live with worry the rest of my life however long that is. Around the time I got diagnosed, my young nephew (21 yrs) was killed in a tragic car accident. That made me realize that none of us know how long we have in this life. Everyone in my family was worried about me with advanced HER cancer, but I'm still here. So who knows!!! Of course we should check up on any strange symptoms and keep our appointments, but beyond that I just concentrate of fixing healthy meals for all my family and getting lots of exercise and sunshine. At least those things are in my control and I enjoy them! Good luck Clementine and try not to worry!
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The What if'sbutton2 said:We can't live that way
I agree with everything you are all saying. Of course we all worry and I agree that "cancer free" is not correct and we should stick with NED. I have made a decision to not live with worry the rest of my life however long that is. Around the time I got diagnosed, my young nephew (21 yrs) was killed in a tragic car accident. That made me realize that none of us know how long we have in this life. Everyone in my family was worried about me with advanced HER cancer, but I'm still here. So who knows!!! Of course we should check up on any strange symptoms and keep our appointments, but beyond that I just concentrate of fixing healthy meals for all my family and getting lots of exercise and sunshine. At least those things are in my control and I enjoy them! Good luck Clementine and try not to worry!
It seems that any time something goes amiss, our minds (and the medical profession's, too) go back to being related to having had cancer or our cancer treatments. Our treatments are more likely to effect our health the longer it's been since we had them. Because nothing has been abnormal for me for a while, I'm not worrying today, but only because all systems seem to be functioning ok. I understand your concern and I hope everything is ok. I had some abnormal platelets a while back and got concerned about that. I think, Clementine, as time goes by we worry less on a daily basis, but it's so easy to be overly concerned if something is amiss. There is a reason for us to keep connected to our oncologists - they know what to look for and how to treat whatever might happen. And because the internet exists, most of us will use it. I think it's a valuable resource and I think I know enough now to not self-diagnose myself via the interenet, but to learn and try to understand better what's going on. When I get my lab results before I see my oncologist, I'm often looking something up, and I think it helps me to have a discussion with her when I see her. You can ask, for example, "could this be from the chemo" and this will force your oncologist to tell you his/her opinions about whetherit might be or not. I like to know what they're thinking and also to put my mind at ease that they think everything is fine because blah, blah, blah, or they're checking this or that out to rule out this or that. I like to understand what's going on in my body as much as possible as well as understanding what my onc thinks about it. While I don't believe our docs have the corner on being smart and I defiitely do not believe we should take opinions as the only opinions, I definitely know that there's a whole lot that I don't know, internet or no internet.
Good luck with all of this. Please post and let us know what's going on.
Suzanne
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I am sending super cyber hugs
I am sending super cyber hugs and wishes that all is OK. Please keep us posted!!
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Oh Clem, I am so sorry ...Double Whammy said:The What if's
It seems that any time something goes amiss, our minds (and the medical profession's, too) go back to being related to having had cancer or our cancer treatments. Our treatments are more likely to effect our health the longer it's been since we had them. Because nothing has been abnormal for me for a while, I'm not worrying today, but only because all systems seem to be functioning ok. I understand your concern and I hope everything is ok. I had some abnormal platelets a while back and got concerned about that. I think, Clementine, as time goes by we worry less on a daily basis, but it's so easy to be overly concerned if something is amiss. There is a reason for us to keep connected to our oncologists - they know what to look for and how to treat whatever might happen. And because the internet exists, most of us will use it. I think it's a valuable resource and I think I know enough now to not self-diagnose myself via the interenet, but to learn and try to understand better what's going on. When I get my lab results before I see my oncologist, I'm often looking something up, and I think it helps me to have a discussion with her when I see her. You can ask, for example, "could this be from the chemo" and this will force your oncologist to tell you his/her opinions about whetherit might be or not. I like to know what they're thinking and also to put my mind at ease that they think everything is fine because blah, blah, blah, or they're checking this or that out to rule out this or that. I like to understand what's going on in my body as much as possible as well as understanding what my onc thinks about it. While I don't believe our docs have the corner on being smart and I defiitely do not believe we should take opinions as the only opinions, I definitely know that there's a whole lot that I don't know, internet or no internet.
Good luck with all of this. Please post and let us know what's going on.
Suzanne
that you are dealing with so much -- Iron levels, possible bleeds - does not sound like fun to say the very least. Any confirmed information, solution or treatment plan?
Please update us when possible.
Vicki Sam
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Good luck with the testCypressCynthia said:I am sending super cyber hugs
I am sending super cyber hugs and wishes that all is OK. Please keep us posted!!
Good luck with the test. Fortunately, a technology will help for procedure to be reasonable and less invasive.
Hoping for the good results and easy treatment.
Hugs
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Thank you allNew Flower said:Good luck with the test
Good luck with the test. Fortunately, a technology will help for procedure to be reasonable and less invasive.
Hoping for the good results and easy treatment.
Hugs
for your supportive responses! I am so lucky to know you guys. I know I may be worrying unnecessarily but that is part of my DNA so, I guess, I'll give myself a pass on that. The funny thing was that I was ITCHING to call my doctor but told myself to give him the full 2 days from Tuesday to call me. So, when he didn't call I called today only to find out that he didn't come in today (Friday) and won't be back in the office until Tuesday. Argh! I think I'll be nipping at a lovely bottle of rose wine this weekend to keep my from worrying too much. I am telling myself, however, that if it were very serious, he would have called me right away.
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I think you're rightClementine_P said:Thank you all
for your supportive responses! I am so lucky to know you guys. I know I may be worrying unnecessarily but that is part of my DNA so, I guess, I'll give myself a pass on that. The funny thing was that I was ITCHING to call my doctor but told myself to give him the full 2 days from Tuesday to call me. So, when he didn't call I called today only to find out that he didn't come in today (Friday) and won't be back in the office until Tuesday. Argh! I think I'll be nipping at a lovely bottle of rose wine this weekend to keep my from worrying too much. I am telling myself, however, that if it were very serious, he would have called me right away.
It's been my experience that the medical personnel get right on the phone when there's bad news, and they're none too swift to let you know everything's okay. Either way, your idea of the rose wine sounds like a good idea:)
xoxo
Victoria
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Keep the faithClementine_P said:Thank you all
for your supportive responses! I am so lucky to know you guys. I know I may be worrying unnecessarily but that is part of my DNA so, I guess, I'll give myself a pass on that. The funny thing was that I was ITCHING to call my doctor but told myself to give him the full 2 days from Tuesday to call me. So, when he didn't call I called today only to find out that he didn't come in today (Friday) and won't be back in the office until Tuesday. Argh! I think I'll be nipping at a lovely bottle of rose wine this weekend to keep my from worrying too much. I am telling myself, however, that if it were very serious, he would have called me right away.
PRAYERS n HUGGS from WEST VIRGINIA
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I too, would be tipping the bottles of wine during thebutton2 said:Rose sounds great
Is there enough of that wine to go around? Pour me a glass and let's wait for your results!! Enjoy your weekend...
-weekend -- as waiting is so so difficult... Keeping yourself busy, or liquored up will help with passing the time. LOL
We love YOU !!!! ....
Vicki Sam
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Wish Victoria and I could be there...aisling8 said:I think you're right
It's been my experience that the medical personnel get right on the phone when there's bad news, and they're none too swift to let you know everything's okay. Either way, your idea of the rose wine sounds like a good idea:)
xoxo
Victoria
...to share a glass of wine with you!
Because I agree...I think most any professional, compassionate doctor who knows you and your history would not have taken a long weekend without calling if there were bad news to discuss.
My experience is that doctors have to prioritize their patients -- and, if they don't call, they assume you know that's because no news = no bad news, and they have other patients who need them more right at the moment. Especially oncologists, who I'm sure always have at least several patients in very serious conditions at any given moment.
What our doctors just don't always "get" is how all that waiting feels from our side. I'm betting, when THEY have to have a test, they get their buddy in the lab to call them right away with the results -- no glass of wine needed!
Clementime, just know we're all waiting here with you....now Victoria, stop hogging all the wine and refill my glass, will ya?
Traci
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Also hope you know something about housing market!VickiSam said:I too, would be tipping the bottles of wine during the
-weekend -- as waiting is so so difficult... Keeping yourself busy, or liquored up will help with passing the time. LOL
We love YOU !!!! ....
Vicki Sam
I love watching reruns of the TV show Modern Family when I need a laugh, and I just saw the episode where Phil misses a phone call from his doctor, and spends the rest of the day convinced he has some fatal disease. When his doctor finally calls back, it's just to ask him for real estate advice.
So, Clementine, I hope you know something about the housing market, because I'm going to think good thoughts that that's all your doctor wants to talk with you about, too!
Traci0 -
LOLTraciInLA said:Also hope you know something about housing market!
I love watching reruns of the TV show Modern Family when I need a laugh, and I just saw the episode where Phil misses a phone call from his doctor, and spends the rest of the day convinced he has some fatal disease. When his doctor finally calls back, it's just to ask him for real estate advice.
So, Clementine, I hope you know something about the housing market, because I'm going to think good thoughts that that's all your doctor wants to talk with you about, too!
TraciWell, Traci, I did just buy an apartment soooooo....maybe???? Ha ha, I can ALWAYS count on you to make me laugh laugh laugh. Thanks much for that and tomorrow when I learn that everything is fine and I was needlessly driving myself crazy, I will send over a bottle of wine to you, Victoria, VickiSam, and anyone else that wants to join! I'll be THAT relieved.
Clem
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That Wine is PINK**Clementine_P said:LOL
Well, Traci, I did just buy an apartment soooooo....maybe???? Ha ha, I can ALWAYS count on you to make me laugh laugh laugh. Thanks much for that and tomorrow when I learn that everything is fine and I was needlessly driving myself crazy, I will send over a bottle of wine to you, Victoria, VickiSam, and anyone else that wants to join! I'll be THAT relieved.
Clem
Isn't that wine Pink? LOL LOL
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All good!
Okay, so my chemo nurse called me today (sporting a bit of an attitude) and said that the preliminary findings were not correct, that their machine malfunctioned and I am doing fine. I am elated on the one hand but also sort of aggravated that I had to spend a week wondering if I had cancer again! I try to keep my relationship with my doctor's office on the light side so I told them that I thought they were in the business of extending people's lives and not taking years off of them (which is what all that worry did!). I guess I need to just let it go and be HAPPY with those results.
Thanks to all my supportive friends here that offered words of sanity and solidarity (especially when it came to the rose wine)! I believe I am entitled to nip (out of relief) again tonight and so I am buying a straw on my way home for easier nipping.
Clementine
PS, Traci, thank you for the laugh!
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