CALLING ALL STAGE I SISTERS
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(((Melmes))) Your fears are normal, I think once you hear the words 'you have cancer' you are always waiting for the other shoe to drop. Can you call your doctor and request some anti-anxiety meds to get you through the next few days?? I hate taking med's but sometimes a little help is needed.
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My PD of 11 years was the one who called me with my results & had to deliver the bad news - the 1st thing I did (after being able to speak) was ask for stronger & double the amount of tranks & he immediately phoned in the rx to my pharmacy. I still have panic attacks, pity parties & crying jags that drive DH crazy - he wants to fix things once & be done with them - he doesn't understand just listening to me & giving me a hug is all I need sometimes. I'm getting better at letting him know what I need. (((((((MELEMES)))))))0
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Happy Mother's Day!
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HAPPY MOTHER'S DAY ALL - Wish my kids and grandkids were here... I got flowers and chocolate from my son and his wife.
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Melmes - The waiting is the worst part and Michelle hit the nail on the head when she said we are always waiting for the other shoe to drop once we are diagnosed.
I have so many questions and no answers. The fear of the unknown is the worst for me. It seems that the medical community where I live does not get in much of a hurry to do things and that fewer followups/less testing are the norm. When I have my first mammo in a few weeks, it will have been 10 months since dx - no MRIs, CTs - nothing at six months - was told once a year was good enough- or it is really?
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Jo - I was told a MRI once a year is enough (I had BMX so no mammies to mammogram), that plus office visits every 3 months with labs and physical exam is all the follow-up I need. My labs were always normal, even during chemo. I would rather not see my onc that often, only because I think she is just going through the motions and my time & money is precious, but that's another story for another thread...
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Michelle - It is good to know that I am not the only one with very few appts. My MO does labs each time and schedules all my tests - mammo, etc. He wanted to have the mammo done before I see him the latter part of June. The gyno appt was scheduled a year ago after my last visit. Labs have all been normal but I do need to talk to him about the lack of energy & stamina I have these days. It is really frustrating.
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Welcome to our new SISTERS♥
Jo...Since we are having same Day Oncologist maybe we can schedule our mammos the same day too.
Mine will be after June 8. when is yours?
Michelle...i never had a MRI
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Melmes- I am chiming in with MIchelle- take some antianxiety meds- ativan if you have them...I had to have a PET/CT a few weeks back and was absolutely wrecked with fear. It is human nature after all we have been through. It came back all clear but then again, thanks to the ativan I slept through it....:)
Jo- it sounds about right- my onc was not going to see me for another 6 months but we have changed that back to every three months since I told her I am not taking the AIs but alternatives instead. She will run full blood panels to make sure hormonal levels are low. She was not thrilled. I am supposed to see BS (I have to call-can't remember if I am supposed to her in June or July-I think June-well Duh). The only reason I had the PET/CT scan was because of the liver spots from the CT scan back when I ws first diagnosed-onc wanted to make sure they were b9 and no changes (original onc and BS said it was a waste of time). Following diagnosis I had a biopsy, a CT, an MRI and a bone scan. Then after the BMX i had a bone density (since they THOUGHT I was going to take an AI and wanted to see how bad the bones were).
Fear is such a sneaky little b*stard...creeps up when we least expect it. I was for some reason reading all of the stats I could find last night from obscure medical journals all over the world....nice light reading at midnight. When I realized every single one of them after all of the medical gobblydegook and stunning statistics....essentially said...luck of the draw-we just don't know why in some cases...I was catonic with fear. All had "suggested" "perhaps" "excluded" etc...so it seemed that studies that started out with 10000 women landed up being based on ten (I exaggerate-but you get my point). The european doc don't agree with the US docs...enough to make one crazy and it did for awhile to me last night.
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(((Shelia))) I had a mammo and MRI last year and once we determined there was less then 5% tissue remaining we all decided that MRI's would be more informative. I am allergic to the MRI contrast so I have to do a two day pre test steroid protocol followed by another day post MRI to avoid complications.
Jo - I just had a thyroid panel done and all was within normal ranges but dang I am so tired all the time and have no energy/stamina either. I am actually getting ready to go take a nap so I can enjoy my Mother's Day Dinner later. It is very frustrating! I was talking with a NP the other day and will be making an appointment for a full work up of all hormone panels, adrenals, etc... using not only blood work but urine, saliva and hair. There has to be an answer in there somewhere... I know she is already thinking about a detox protocol to clean out all the toxins I have had thrown at me over the last two years. Just need to save a little $$ since it is not covered by my insurance
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(((annettek))) that's definitely was not light reading for the middle of the night...I have concluded that it is a crap shot and all we can do is what we feel is best for ourselves, roll the dice and pray for the best.
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crapshoot it is O2B:) Let's here it for lady luck smiling on us all:)
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Sheila - I have my mammo on June 3rd, gyno on June 8th and onc on June 20th. Onc wanted the mammo results when I go see him - I hope I don't have to wait 17 days for results even if they are clear - keep fingers crossed on that one. The gyno was scheduled a year ago. We will have to compare notes.
o2b - You will have to tell me what the NP recommends. This crap has to stop before it drives me crazy.
anettek - Light reading at midnight? NOT! This whole thing is a crap shoot - I don't pay attention to numbers, percentages or anything like that anymore. Besides, no one agrees with them anyway so why put them in print? To further scare the shit out of us??????
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Happy Birthday Sheila... Love you!!
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annettek: You mention that after your diagnosis you had a number of tests, including a CT, a bone scan, etc. I assume these were done for staging purposes? I am still confused by the different treatment that different patients receive. You had an early diagnosis (Stage 1, Grade 1, etc) and no evidence of lymph node involvement. I know it used to be routine to run all of these tests on every cancer patient, but I didn't think that was being done anymore unless there were symptoms to indicate their necessity.
I had no scans, no CXR, etc. before or after my diagnosis. I'm basically a healthy person (non smoker, no diabetes, no hypertension, etc). All I had was a pre-surgery physical with basic bloodwork and, of course, all the breast imaging that led to my diagnosis.
Am I missing something? Seems every time my brain is in a good place with all of this I read or hear something that makes me go "what??????" I'd be interested to hear if it is still routine to run imaging tests for staging/treatment planning so I'll know if I should be pushing the issue with my docs.
Thanks!!!
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TinaT - I had the same gambit of tests, etc pre & post surgery so I don't think you are missing anything. I had the same questions you did and after talking with my MO, he assured me that every thing necessary was being done or had been done. That's all I needed to hear. He told me that some doctors tend to overtest when it comes to cancer patients - specifically breast cancer patients. You and I seem to be in the same boat so to speak and I have to tell you I trust my MO and feel confident he is taking really good care of me. As a side note, my DH sees the same MO and has seem him for the past 6 years.
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Sheila - I did not realize it was your birthday - HAPPY BIRTHDAY MY FRIEND!
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Tina- the more i know the less i understand. The tests ordered vary greatly between docs...I have had less than some and more than others. I know the BS wanted to know as much as possible before going in as she had already been shocked that my cancer was not B9 as she had predicted before the biopsy.My oncodx was a 6. I am assuming from this point out unless blood tests, symptoms indicate otherwise that the only imaging I will have will be either an MRI or ultrasound of my breasts as I can no longer have a mammogram (bmx and reconstruction). Who knows what is right? So many tests get false positives and in my case- the small spots that showed up in the liver from way back to the orginal tests before the BMX did not concern either the onc or bs but since I have a new onc she was all freaked out (thus freaking me out) and wanted me to have the PET/CT to make sure. So, as I opened this with, I think I know less now than I knew before. That puts me in good company with all the world's lead researchers as it seems so much supposition in so many cases. I have one major hurdle left to fight and that is my smoking. It is so strange to do so much to fight bc and I am so weak in the face of smoking. But I will do it.
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Sheila- is it your birthday today>>>>???????
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YES Annette
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((((melmes))) sorry you're going thru the stress of waiting for answers. So many of us have been there too, you're not alone. It's a rough place to be... the waiting and the not knowing and the confusing information that is out there. Not to mention all the Onc do different protocols. UGH. Know that you can come here and vent all you want. We're here to support you!
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SHEILA-
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annettek: Thanks, sounds like you did have a "staging" CT at time of diagnosis and the results of that led to a few other tests. Good luck with saying bye-bye to the cigarettes. I know that you know this, but that would be one of the best, best, BEST things you could ever do for yourself! I'm so glad I never started smoking, can't imagine how hard it must be to break that addiction.
Have a good week!
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pink candy- our prognosis is similar...IDC, <1cm. grade 2....heart consditions in family history...I had a heart attack and th e cardiologist and oncologist believe it may have been hastened along or caused by tami...oncologist has taken me off tami and has told me not to worry...we will take your blood again in July and see if you are post-menopausal and if so, look at the options then...btu he said that until that time, I was ok to not be on it....dealing with th eimmediate issue of the heart was more important....why are you thinking of staying on tami for 6 more months if it has caused you this many side affects and you have heart history? Has your oncologist suggested you go off of it or is it because of your skin etc?
Ducky- what are the potential side affects from Femara?
Seyla- While I know this day is filled with sadness, it is also a day to celebrate that you are here...I hope your day was filled with gentleness and love
Melmes- I understand....every pain I feel these days, I think I am going to wake up again at 2am in the middle of a heart attack...someone said to me today "gee..oyou are lucky you woke up on the last one"....which was meant to be reassuring...but it has managed to become a brain workm rotonight and despite how fatigued I am...I do not really want to go to bed....I am afraid to not wake up....not THAT is ridiculous....your concern re. cancer haveing spread is one we all fear my dear...really....I tell myself i will all be fine ...no point in worrying but we do....but one more thing...if there does ever end up being something else down the line, you will be able to handle it...you have already handled the scariest thing in the world and you have managed very well....so....well done and continue the 24 hour rule:) michelles idea of getting some anti-anxiety meds is a good one....you need to sleep and be able to get on with getting on while you wait ...hugs!
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Jo !!! YES!!!! I understand the lack of energy now!!!! Though mine is clearly heart medicatin orelated, it has kicked lme on my **S!
ina/Jo- i have had he same tests as you folks and am wating on the results...rad appointment 3 months post rads....oncology only because i had a heart attack and he took me off rads and freackked out on the ophone so was given an appointment immediately...but not exected to see anyone else ...unles the mammogram goes pearshaped...then i would see my BS instead of my GP!
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annettek - come back over to the Stop Smoking Thread, you will get lots of support and no judgement. I quit smoking on May 6th 2009, nine days before my dx. It was the hardest thing I ever did, especially with all the fears and craziness that comes with a BC dx... I was a died hard, unapologetic 1 1/2 pack a day smoker for over 20 years. Every few months one of my children will tell me, completely out of the blue, that they are so proud of me for quiting. That's all the motivation I need to stay quit...
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AnnetteK I also was a smoker and quit when I was dx. I never was a pack a day smoker. I only smoked like 3 packs a week, but any smoking wasn't good for me and I made the decision to quit. My husband had also quit and that really helped me. A good sound support system is the key to staying quit. It is hard and there are days when anyone that has ever smoked will want to have just one, the key is to talk to someone and find something else to keep you busy so you won't think about it.
Take Care
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For your kind words.
♥♥GOOD NIGHT SISTERS♥♥
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Lisa/PauldingMom's address.
Tina Baumgart
1467 North Cain Ct
Douglasville GA 30134
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