I can't do this anymore,living with "it"

QueenK · April 2009

I was diagnosed through a whirlwind of "no its not cancer" and more "No its not cancer" The lucky me "Its cancer" the Dr saying she was shocked was not helpful.I had the offending thing removed, it was never ever leaning towards it being cancer.I had all the negative tests, no lump couldn't be...and it was.

I spent the entire summer recovering, crying and losing my mind.I did radiation and ended it in Novemeber.I do not trust any medical person now, a theme that repeats itself to all the Drs involved in my care "watch her, we can't be honest because she will freak out, but she always thinks we are lying anyway"

I have my post cancer mammo and breast exam.I am thinking this will not be happening.I do not have the coping skills to live with myself and the anxiety so I would much rather hide.How do I live with the thought it may come back? When do i stop thinking about it day and night? the anxiety meds help but I just cannot do this.I am shutting down.I can trust no one.

lexislove · April 2009

I had the same problem,

Back in October I had my mammogram on my healthy breast. I had a mastectomy on the other. I was sitting there waiting for them to call me. The mammogramy centre was running behind, and I was becoming a complete wreck!

It was bad enough that I had major anxiety the 2 weeks leading up to this day NOw I have to wait! I was almost going to go up to the receptionist and say to her, "look if I don't get in that room in 5 minutes all hell will break loose."

I was soooo close to tears. Then finally I got called. I took off my shirt and bra, put on the gown and the tech led me to the exact same room where I had my first mammogram when I was diagnosed. I felt like Deja Vu. The tech could obviously tell I was a ticking time bomb and was so comapsionate. I was lucky when she checked my film she did not have to take any more images. she then said that to her everything looked good and gave me a smile.

I know its hard...but you just have to suck it up. Maybe take someone with you and plan lunch after. when you are done you can breath...untill the next time. Good luck!

barbe1958 · April 2009

You don't have to be brave, you just have to show up.

Someone wise on these boards uses that in her signature line. I love it.

mzmiller99 · April 2009

Jennywren - Let me hold you tight with a cyber hug. Jennywren, you need to trust someone enough to tell them how traumatized you are. Stress and anxiety comes with the territory, but if it's shutting you down, and the meds aren't helping, then you need to find someone you can talk to to help you through this .

Someone asked me if I wanted to spend the next twenty years scared to death that the cancer would return or live the next twenty years. And, whether it comes back or not, I will not have wasted all that time worrying about something I can't control.

OK, it makes sense, even though it is hard to do. But, you are too wonderful a woman to let this take you down.

I found a therapist at the cancer center to talk to. And, even though I felt guilty taking up his time, because all I had was "old lady" cancer, he treated me with with the utmost sincerity. Listened to me babble and howl and wail, and even wanted to see me again! So please make an appointment with someone.

We are all in the same d*mned boat here, you know that, and we support each other, but you might want someone you can have a face to face conversation with.

I've missed you, girl friend.

Hugs,

Susan

QueenK · April 2009

Thank you guys.I think the real problem is, I have always been like this, chicken little.My mind cannot seperate fact from fiction.In the drs every look, every glance means they know something I don't.

I cannot get over that my cancer was hidden from me.It is terifying and unprofessional.Hear me out and I will explain.

I had apost op check up set for 10 days after my duct excision, and had to go in earlier as I had pain and bleeding.While there she said they had an inconclusive on the path report.I said, "does it say ANYTHING about cancer??" The dr said "It does not, it says inconclusive" The next day I went to the family doc for a refill of meds, I SAW THE LETTER from the surgeon it said "Possible DCIS in all 5 samples, probable carcinoma" The surgeon LIED, the Dr patted me and said "I am 99% sure it will come back not cancer.And it DID. No wonder I want to punch people.

Then to add insult to injury,the surgeon got the report back on the 23rd of July.I went in on the 31st, ALONE thinking she would have called me.I was the last one called in and they said it was cancer.

I don't trust my shrink, I don't trust my family doctor, the surgeon or the radiation onc.I think I am losing my mind.The shrink just snows me with meds.I am so scared I am going to go crazy or do something rash.This is far beyond worrying,

Colette37 · April 2009

Jenny...Your medical records is your personal records and you have every right to read it. Any reports or tests from ANYWHERE that come back BY LAW is accessible to you anytime that you want to see it. You may have to pay for a copy of the records, but they can not keep them from you and you would be able to get a straight answer.

I did this very thing when I found out that I had cancer on March 17 of this year. I recieved the info over the phone (the GYN stated that it didn't have any other information other than it was positive for cancer, which I knew was BS at the time because I was an EMT/MEDIC in the military!) and after the shock wore off I went to the OB/GYNs office and got a copy of the report. It had everything in it..there was only one part pending and that was the HER2 test or something like that.

I am lucky because my Onc listens very carefully to what I say and isn't hiding anything from me and does what I ask. He has became my life line in battling this and I trust him.

When I write this I am not trying to belittle you I am just wanting you to know how much power that you do have over all tests that are done. You have good reason to be angry at those Dr. for making you feel like you are a child who needs to be sheltered. Is there anyway that you could get a different set of Dr.?

lexislove · April 2009

Jenny..

I had MAJOR trust issues as well. I was misdiagnosed by my ex family doctor and trusted noone. I was going crazy I thought my onc knew something that I didn't. I asked all my doctors, and when I say all, I mean onc, rad onc,bs, and family doctor to re read my path report. Why? Because I wanted to see if they were all telling me the same thing and not hiding anything! It's crazy when I think about it now.

One day a week after finishing rads I lost it. I was in such a funk I guess because of the whole "end of treatment anxiety". I called my oncs office in tears. His poor receptionist asked for me to come in later that day so I could talk to him. I said, "are you crazy? I can not drive like this!!!!!"

She then got my number and told me my onc would call me back. He called 10 minutes later and I called him a lier and accused him of not being "real" with me. Woahhhh! He was pissed.

I guess I would be too...I can laugh now, but .... He then calmed me down and told me if I ever wanted to ask questions about MY particular case to ask him and him only. He told me to avoid the internet and some chat rooms, but I LOVE IT HERE, so I ignore him on that.....AND that I HAVE TO TRUST HIM.Thats where I'm trying to get with my rambling. Sorry for the long story but I wanted you to see that you are no losing it and there is others who have felt like you do now.

That night I really thought about my conversation with him. And I knew he was right.He knows how I was misdiagnosed, he knew my fears but if I can't trust my team of doctors, then who can I trust? They all in some way saved my life, I am forever grateful. The least thing I can do is have trust and faith that they are doing everything for my best interest. Smile

jrgolomb · April 2009

Lexiglove--I know what you mean about the distrust issue. I am facing being in the "gray" area regarding rads and wonder if I should get it because maybe i misunderstood and I am really worse off and they just aren't letting me know right now. For the first several weeks whenever I talked to my bs, ps, or oncologist about results of tests, the cancer was more widespread and closer to the chest and more invasive than every. it is horrible at first....but it does get better!

lexislove · April 2009

How old are you?

If it was close to the chest wall then ya. I would do the rads. To me...I have to sleep at night knowing I have done EVERYTHING! I could not live with the could of's ...should of's if something was to return. It's best to hit it hard now....if it was to come back, we might not be as lucky.

These are just my views. You obviously know all the other woman on here have their own too. Some woman are really against rads and they say, no. You will here all stories. The bottom line, they are not you. YOU have to live with your decisions for the rest of your life. No doctor can say for sure that it will NOT come back. For me ...that means doing everything I can do.

jrgolomb · April 2009

You are completely right lexiglove. It depends on what I decide, and now I am going back and forth. It's wierd, my intuition "spoke" to me regarding pushing to find a better dx, it pushed me to go for the hardest chemo for the cancer type I have, but for the rads I feel totally lackluster either way. I kind of feel numb about it......I suppose when the first mri comes up I may feel better.

Thanks for your input!

jrgolomb · April 2009

btw lexiglove I am 53.....I did however ask to kick the multifocal cancer I have in the butt because I had a child in my late 30s and I gotta keep working to get her thru college!!!!!! lol.

nelia48 · April 2009

I'm with Collette here. I was even told that my medical records were mind and if I wanted to read them, just ask for them. Every report that comes back is yours and you have a right to read them. So when the mammogram comes back from the radiologist with the report, ask to see it. Ask for your pathology report, etc. That way, you will KNOW for sure, even if you don't understand it. My oncologist doesn't say much to me, and I do get the feeling sometimes that he is keeping something from me. I wonder if he thinks I'm dying or going to make it, etc. At the beginning, I thought he was so open and up front, but as treatment progressed, I felt he was too positive with words like, "amazing!", etc. Not that I wanted the worst, mind you. I just want to be sure that I'm being told everything and that what I'm being told the truth. And the best way to know that is to read your own chart!

thegoodfight · April 2009

Hi to all my dear sisters,

I am not even sure if this is where to post this, but I am stressed so I am posting! I was diagnosed last July, did my chemo, and did my rads...................and now have started my arimidex.

I had my post chemo check with my med onc on April 1st and spent most of the visit with his nurse. Every question I asked she would reply, check with your gyn, or check with your internist, etc. I have been battling mouth thrush all during chemo and constant flare ups since. She said maybe you should see a gastrointerologist.

First I was pissed, but then I realized this is all probably good, since they are not in charge of my general med care. I think if they are taking over every aspect you are in trouble and in the later stages of cancer.

Now fast forward to two weeks ago. I noticed a swelling on my clavicle on Monday. I didn't panic because I was seeing the breast surgeon on that Wednesday for a 3 month recheck on a lump he found in the other breast and I knew he would take a look. Good news about the lump, it is "less significant" and doesn't appear to have cancer characteristics so return for another check in the fall. He looked at the swelling and said he didn't think it was anything to worry about, but of course to be sure I could have a cat scan.

Again, I decided to wait because the following week, which was last week I was seeing my internist and my rad onc for my post rads 6 week check. The internist said she didn't think it was anything, but said let's do a cat scan anyway. Did that Thursday and of course still waiting for results.

Oh forgot to mention that the Monday before I did call my onc's office and wanted to come in for them to look, but they said I would have to wait for a call back from the nurse first. Six hours later she called back and after a few questions she said nothing to worry about. I let it slide because as I said I was seeing doctors Wednesday and Friday that week.

Saw the rad onc Friday and that went well although my breast exam and a look at the swelling was done by the PA. She too was not overly concerned but glad I had CT and asked me to send them the results.

NOW TODAY!! I moved my fingers from the swelling on the clavicle toward the center of my chest and just below my neck I feel a hard lump and I do not have one on the other side. I am not feeling good about this (restarted my xanex) and know I really can't do anything today being Sunday.

I am so glad I have already had the CT and will have results hopefully tomorrow. I will call the internist in the morning and let her know about the lump so she can hopefully track down the results so we don't have to wait.

Now I know that this could all be nothing, and of course I am hoping that is the result. But this has reminded me that my new normal can be very stressful. Infact, the mouth thrush is worse today and I am sure that is from stress too.

The question is how do we live an everyday life that we don't react or overreact to any blip in the radar. I can only hope that in time it gets easier. I have just been reminded how scared I am and how real this beast is.

Thanks for listening, I just had to get it out to those who would understand. My husband and grown children have been very supportive, but right now they think I am causing myself a lot of undue stress. Easy for them to say............................

Of course I will let you all know what I find out this week.

Caren

nelia48 · April 2009

Caren, I hate weekends! Why is it all the stress comes on weekends???!!!!! It was an eye-opener and a bit of "duh" for me when I finally figured it out that my oncologist was just my cancer Dr. When my blood pressure went sky high, he finally told me, "I don't do blood pressure!" i had to go to my PCP for that. But now, I'm confused. When I do have a problem, like sore ribs and pains in my chest, do I call my PCP or do I call the cancer center first? When I find a lump (same places as you are describing), who do I call first? I also have swelling above the clavical bone. I panicked at first, thinking it was a huge lump as it was quite hard. But the next day, it was down. So it must be swelling from the mastectomy and radiation. I think it is awful that we have to think about this daily. I feel like a weirdo constantly feeling myself!!!!!!

reen · April 2009

This sounds all too familiar. I have so much swelling, I don't know what is normal. I too feel the doctors aren't being honest and I question everything. Is that a lump or scar tissue? I even question my husband by saying, "Did they tell you something and told you not to tell me?"

Do you ever feel comfortable with life again?

thegoodfight · April 2009

I know there were not a lot of postings in response to my post three days ago, but I also know many people do peruse and read the posts, even if they don't post, so I am giving an update.

Needless to say it has been stressful. The CT did show some things, but both my onc and the breast surgeon say let's wait and see and do another scan in three months. there is a very good chance it is scar tissue and/or some old injury. They are not ruling out cancer, but feel there is no urgency at this point and comfortable holding tight till next scan. I happen to already have one scheduled for early July for another thing we are watching so that one will serve the purpose. I have to trust my doctors.....................I have to let go of this until the next test. I know it is my body, but I also have no reason to doubt their expertise at this point.

I did see my gyn for my annual today and she is now having me do a CA125 and a vaginal ultrasound. She just wants markers because I am now a person at risk. She also said to schedule my colonoscopy every 3 years instead of 5 now for the same reason. It seems those are the two other cancers we are at greater risk for once having been diagnosed with bc. I am passing this info on so you can all check it out with your doctors.

I am not going to let this thing beat me down. I am going on with my life.............tennis tomorrow at 9:30.................woo hoo. In a couple of weeks I fly to Philly for a week for my first grandson's first birthday celebration. These are the things I am focusing on.

As always, thanks for all the support..................I know you are all out there for me as I am here for you.

Caren

PT63 · April 2009

I have to agree that I hate the "new normal". For the last 3 weeks I had a gradually enlarging lymph node in my neck and the outside of my neck felt swollen and it hurt under my ear. I will also tell you that this particular lymph node is always bigger than the rest and does usually get bigger during allergy season. BUT..... it was driving me crazy so I called my oncology office and they told me to come in the next day. I drove 40 minutes (80 minute round trip) to my oncologist office so that they could tell me that I had an ear infection!!!!! My PCP office is less than 2 miles from my house! My oncologist probably thought I was crazy.....

Truthfully though.... I wish I could just move on and not worry about every ache and pain. Even my mother suggested that I go on some sort of anti-anxiety med. Instead I just upped my exercise program and added kickboxing so I could kick the %$#! out of cancer.

Even though I do trust my oncologist.... I always wonder if I have missed something....

Jenny, Get a copy of every single report and have a copy sent to your PCP office. That way if you have questions you can ask more than one source. I actually keep all of my reports in one binder so I can find them if I want to take them with me.

nelia48 · April 2009

I must say, it's been good to read all this and to know I'm not crazy and I'm not alone in all my feelings. I finished my rads treatments on April 15th, and didn't realize that all the pains and swellings were from that. The stabbing pains in the chest were the worst, but that is now gone. And the swelling under my arm and above the clavicle bone is now gone, too. Now that I know that this will go up and down, maybe I won't be as nervous about it. I see my oncologist Monday and I had this list of complaints, but it seems the only one left on the list is the rib pain. It's been there since surgery in January and has gotten worse since radiation. I hate thinking the worst all the time!!!!

koshka1 · May 2009

Hugs....

I know how you feel...

But sometimes they dont know it's cancer until they look under the microscope.

My story... I was 38.....and thru my job seeing clients...ladies left right and center were telling me they were diagnosed with breast cancer...so lo and behold i went to dr and asked for mammo..they said...ohhhh tooo young, no symptoms,,wait til you are 40.....

So i persisted..and finally they sent me...

Well...my first ever mammo...calcifications showed up. 1st doctor said probably b9....went to surgeon..he said oh..probably turn out to be nothing...went to 2nd surgeon cuz i didn't like the first..she said,,, oh looks like milk of calcium deposit...then went for stereotactic biopsy and radiologist said oh..looks like milk of calcium - i am over 90% sure it is nothing.......so biopsy comes back - ADH cells..and suspicious..then they tell me..well. we gotta cut this out...so i go for excisional biopsy and surgeon says it looked like nothing....turned out to be DCIS and 2 tiny idc tumours 1mm and 4mm....

So no wonder i am crazy and insane.....

But,,, I am glad they persisted and got the buggers out of me......

Just be strong...and it is normal to be afraid...all of us are...

Oh..and by the way,,, I went for my first follow-up mammo.....I was so nervous and frazzled I almost passed out!

Hugs

I can't do this anymore,living with "it"

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