It's just hitting me. I have cancer.

pamh

It's just hitting me. I have cancer.

pamh

My journey began in the spring of 2006 when I went for a routine mamogram.  An abnormal spot was found in my left breast and I was sent to a surgeon.  He did an exam, couldn't feel anything and recommended a stereotactic biopsy.  The biopsy went well.  The result came back no evidence of malignancy seen.  6months later I had another mamogram on the left breast and the report said there was a benign mass present-recommend mamog 6 months later.  That brings me to May 2007 when the next mamog was done.  Same area was present.  The radiologist (the same who did the biopsy in 2006) recommended surgical excision of the area.  My surgeon explained that the radiologist felt my mamog. would always be questionable with that mass there.  My surgeon felt I had scar tissue from the biopsy and he was reasonably sure of that.  Of course he could not say 100% without excising it but he seemed so confident, giving the biopsy result.  So I never really worried that it might be cancer.  I just kept a positive outlook, reassurred my family, and went for the surgery.  When I went back 1 week later to see my surgeon, he said "Do you want the good news of the bad news?"  When he told me the mass was cancer I was numb and I think I have been in a weird state of denial or numbness since.  The surgeon had done a lumpectomy when he excised the mass.  The choice of surgery had already been made for me.  He did tell me  at my f/u appt that I could go back and have a mastectomy if I wanted to but I didn't choose to do that.  He said he had gotten it all-clear margins.  I was referred to an oncologist and radiation oncologist.  I had to wait about 6 weeks to see the oncologist and that held up getting started on my radiation treatment.  I should have gone to another oncologist I guess.  I was exhausted during radiation.  My blood pressure dropped so low but finally that got straight when the cardiologist I was sent to stopped my bp med.  My husband and children (33yrs and 30 yrs) seldom talk about my cancer.  I guess they just don't know what to say. My husband tries to be very supportive though-he helps my around the house and shops for groceries, etc.  Once my radiation was completed and I got back my energy, I guess I thought everything was behind me except taking that little pill (Arimidex) every day. 

With the Christmas holiday here I feel like all I want to do is cry.  I have a bulging disc in my back that I need a shot in but the doctor needed an MRI before he can give the the shot.  I understand the need for the MRI with the history of BC-he wants to be sure there is no Cancer in the back before inserting a needle.  I also had to get a bone scan this week.  I had the MRI on the 19th but I have to wait for the shot until 1/7. 

I feel like someone just took a blindfold off my eyes and I can see I have cancer now.  I feel tired.  I want to cry.  I just want to talk to someone about having cancer.  I guess I set myself up to be so sure I didn't have cancer when I had the first biopsy. When the second one on the same mass was cancer=that is just unbelievable. I just don't understand how that happens.  Now I am getting a little scared.  What ifs are starting to creep into my thinking. 

NoH8

I freaked out when I had my first recurrence scare and spent a very long 6 weeks playing the what if game. I was absolutely miserable. Afterwards I said I was never going to put myself through that again. I'm big on positive self talk and when I had my next scare I just reminded myself that whatever is or isn't present won't change with worrying. It won't make the results come any sooner or guarantee me good ones. The only thing worrying will do is make me miserable and make the waiting seem interminable. I always kept in the back of my mind that things could be bad, but focused on the positive while waiting. I'm probably making this more simple than it was, but this approach really worked for me.

Maybe your husband and kids don't talk about the cancer because they are waiting for you to take the lead. I know that's hard, I always appreciated it when people brought the subject up to me, because I wanted and needed to talk about it. Have you tried to broach the subject with them? Not all of us are fortunate enough to have immediate family who understand and are willing and able to talk about things. Hopefully yours are and they just don't know how to start the conversation.

abbadoodles

Pam, you may actually NOT have cancer now.  Hopefully, it was all removed in the surgery and the rest of your treatments are just-in-case. 

Tina

SISKimberly

Pam,

I'm with Amy and Tina. Cancer doesn't just happen to us...it happens to our friends and family...and they often don't know what to say for fear of somehow making us uncomfortable...so they act as if all is normal, so we feel all is normal. Communication is vital, and as Amy stated, you may need to start that dialogue. I have talked about my diagnosis since before I had an actual diagnosis...I just knew...and my talking about it has allowed my friends and family to feel free to discuss their concerns and ask questions of me.



Like me dear Pam, you had cancer...it's been removed...(I had a bilateral mastectomy with expanders 12/6/07) clear margins your surgeon stated...and radiation is done. The MRI is a precaution that should give you comfort that your bulging disc is just that...a bulging painful can't wait to get rid of this pain disc. (My husband had three surgeries for a bulging disc that eventually ruptured and they had to fuse it. He's so much better now. I hope yours is more willing to behave itself and just calm down with the shot.)



I will begin my chemotini after the holidays followed by radiation. I look forward to being on the otherside.



Take care Pam. We're here for you.

Your SIS(Sister In Survival)

KImberly

Anonymous

Pam...I definitely echo what the other posters wrote...as far as you know right now, you had cancer...and no longer do. However, I hear in your words what all of us go through at at least one point in this journey and that is the sudden stripping away of our innocence and our confidence that we're definitely going to have a very, very long, healthy life ahead and, even if it won't be completely healthy when we're "old," we don't need to think about such depressing stuff for a very long time. Then, suddenly, we're struck this huge blow....we have cancer and the jig is up (or so it feels)!!! We might actually die....and soon! Okay, so how can we not freak out about that????! And how can we expect anyone else, even close ones, to understand exactly what we're feeling? We can't. And that's why we're all here...to share those fears and to support one another. The fact is, Pam, that you may, indeed, live a very long life and never again see even a day of illness or disability. Or you may not. But you are NED (no evidence of disease) TODAY....and that's all any one of us, including those who've never had cancer, can count on. I know that I'm just stating the obvious, but I think that the bottom line is that it's our one certain truth in response to this dilemna. Just know, Pam, that you're absolutely not alone in your feeling this way....we're all there or have been there.

~Marin

wallan

Pam:

  I ditto what Marin has said. You may never have cancer again. Or you may find out you have it tomorrow. We just don't know.

But you have the gift of insight now. You now know that anything can happen. You will not live forever. No-one will. So you can start to really really truly live from your soul.

Marin is right. We have all been where you are. Or, we may still be. As for me, I am where you are now... I  understand. But tomorrow, I will feel better. I just know it. Because it ebbs and flows.

Just remember that we are here for you.

Wendy A

Shirlann

Hey sisters, we have Post Traumatic Stress Syndrome, same as the vets.  This journey does not end with treatment.  We still have to keep walking.

Our family and friends desperately WANT us to feel and be normal.  But that is sometimes just not in the cards, not for now.  Especially at Christmas, with so many memories of carefree, younger days.

But hang in there, it does get better, and if it doesn't go for "better living through chemistry" and get on anti-deps.  You don't get a single brownie point for pointless suffering.

Gentle hugs, Shirlann

TenderIsOurMight

Shirlann, I've been giving a lot of thought to your concept of Breast Cancer Post Traumatic Stress Syndrome. I think you're right on target.



Even when your past you're treatments, or on treatment, etc, regardless of whether your early bc, or with metastasis, a good amount of time is spent revisiting the day of diagnosis, and waiting for the other shoe to drop. So too, apparently do our oncologists, as evidenced by their work on chemical prevention, prescription of hormonals to lessen recurrence, and scans, chemo, hormonals and biologics for chronic metastatic.



My question then, is why is their not a DSMIII diagnosis code for this? Surely not all breast cancer patient's suffer from it, but given the amount of prescriptions for antidepressants and anxiety reducing drugs, plus chronic pain management, even just as talked about on this board, well, clearly a great number of women and men do worry in a manner consistent with Post Traumatic Stress Syndrome.



Maybe we might suggest naming our diagnosis: Post Traumatic Breast Syndrome. It's real, it's common, and it's recognition may help all, especially our sisters and brothers with Stage IV disease, get the needed recognition of the stress and impact on daily living breast cancer has.



Pam, we so understand your post. The circle of medical investigations for the "what if's" just heighten one's stress level. I'm sorry about your back pain from the disc; that is so painful. January probably can't come soon enough for you. But...there's always too much pain and a trip to the ER to get that MRI and then shot.



Post Traumatic Breast Syndrome: a real deal in need of a real DSM III diagnostic code.



Tender

Bren-2007

You gals are so right about the PTSD.  It's the same as for the Vets, survivors of natural disasters, 9/11, etc., but our triggers are different and constant ... regular scans, MRI's, 3 month check-ups, daily hormonal therapy, monthly self-breast exams, chronic pain, ongoing chemo, and more doctors than you can shake a stick at.

Yup, how about a DSMIV code!!  Probably not possible cause they'd have to invent a whole new slew of meds for us!!

Bren

pamh

I think you all have hit the nail on the head.  PTSD makes sense.  No wonder the circle goes around and around in my head.  True, the cancer I had has been removed but like Bren just said, there are so many triggers that bring the anxiety to me.  I did not allow myself to think much about what was going on with me in the beginning nor really during my radiation.  I just focused on the immediate task at hand.  I was just going through the motions to get through treatment.  I had in my mind once surgery and radiation was done, I was finished-home free except for hormone med. I even expected that to be a breeze.  One month after starting Arimidex I started with vaginal dryness and yeast infection.  Doc said this was from the med.  That was my first wake-up-my first indication- that this was not going to be over so quickly.  Now I have the new regimen of acidophilus daily to decrease the yeast, & routine use of lubricant for the vag dryness. Then the new bone scan, & MRI-all just to make sure there is no cancer.  I guess I had a flood of anxiety, a flood of overwhelming feeling that this is going to be a long haul.  The cancer may be out of my body but the experience is far from over.

Thank goodness I still have a counselor I see 1-2 times a month.  I have seen him for a few years for what he called PTSD related to something entirely different that happened to me a few years ago.  When I see him in Jan I will definately be talking to him about PTBD.  I like that Tender.

You all have been so great to guide me and help me try to make sense of my feelings.  Thank you so much.  Pam

TenderIsOurMight

Oops, thanks, Bren, I meant DSM IV code (the universal diagnostic code book put out by the AMA, with new categories of diagnosis established by specialty expert committees). I must be getting forgetful.



Pam, please thank Shirlann for pointing out this valid and overlooked connection. She's been mentioning it for quite some time, giving me pause. You go Shirlann!



Pretty warm sunny day before Christmas here,

Tender

pamh

Yes, thank you Shirlann for pointing out this connection.  Has anyone ever brought this up to their doctor or counselor?  I'm just wondering if the medical folks have even thought of the connection.  

Nice day in VA too.  Warm-in the 60s.  I wish you all the best Christmas ever.  I've decided to start taking some time for myself after Christmas is over.  I just want to have some quiet, quality time for me and some for me and my husband.  I am going to try to get the "crazys" put away with all the decorations!  It may last for a while anyway. 

Pam

Bren-2007

Pam,

Where are you in VA?  I'm near Martinsville ...

Bren

Anonymous

It is so much simpler to stick ones head in the sand and pretend it never happened. If it never happened then there's no worrying about anything coming back.

danix5

Pam,

Look what good you have done for B/C already got all the girls fired up to start a new therapy! 

I myself have to look at things as half empty,not half full.  When I was told many times you have a cat 4 we need to biopsy,each time I prepared for the worst.  (Funny how this time they let me go saying no new issues. Your fine! Only to call me back the next day saying you have to get in here now, 3 dr's have looked at your mamo and you have micro-cal's!  That was the worst!  Finally told I was okay.To have them snatch that rare happiness and tell me you are not only not okay, you have cancer, but only DCIS. !  That only DCIS is leading me to bi-lateral mast in Jan)  Oh well! 

 I look at things half empty because I have to prepare mentally and physically for the worst.  I plan the what "if's " in my head and with my husband, if I need chemo who will drive me, assign chores in my head that each child will become solely responsible for , have 5 of them, I am currently organizing and cleaning like a mad woman  prior to having a baby.  Nesting for my surgery I suppose.  This time I think I do not have to pull the clothes out for the kids, so my husband knows what I want them to wear to the hospital. HAHA!! 

 All this helps me not feel I am losing control and makes me accept my worst fears as a possible reality!  Then if things work out better I am pleasantly surprised!  Yeah!! 

 My children and husband do not talk about it either.  They are all very frighten I do the talking, a gift I have!!! LOL!  So, I agree with the girls if you feel comfortable bring it up to them!  I am very surprised at how many "friends" I have that won't even call me or say much more than a quick "Hello" when I seem them out.  Clearly my cancer makes them uncomfortable also!  I have no time for that!  Some people handle this differently so I do not really blame them, but I do view my future friendships with them differently .  A hug in the local Walmart from someone you have known for 10 -15 yrs when you are going through this crap  would be nice!  Oh well!

There is no easy way to get through all of this but talking, worrying and waiting and doing that with people who really love you!!  Talk to your family openly and ask them if that bothers them.  If it is to difficult, some people really find talking about things very difficult.  I myself can not understand that!!!!  Then play it by ear how much you should vent to them, and then vent to us here instead!! If you  need to!!!  Good luck!

dcbkc

Dani,

I totally get how you are feeling.  My husband would sound so frustrated with me when  I would talk about some aspect of bc.  Then, as we talked more, he finally realized that he was taking his frustration at not being able to help me with the pain/ worry/fright out on me.  I guess that's a 'man' thing. 

I was dx in Aug., had a lumpectomy on 8/31.  It was found during my annual mammo.  I was supposed to have it in May but we had a huge family occasion, so I put it off until early Aug.  I had to have a microscopic mammo a week later -- there was something suspicious.  The next week was the stereotactic biopsy (all Thursdays).  I got the call on Monday, met with the surgeon on Wed., had pre-op on Thurs., surgery Fri.  They say everything happens for a reason. May be if I had done the mammo in May, it would have still been too small to see.  Anyway, had rad. ending on 11/2.  What a horrible time. My reactions were 'different' than what the staff was accustomed to seeing.  Didn't help me emotionally AT ALL.  But that's for another time.

As we wait for each test result in the meantime, I can't be positive -- there are too many possiblities.  But I'm not negative either.  I do plan for the worst, just in case, but hope for the best.  I try to stay neutral -- like in the middle of a seesaw -- and yes, it is a balancing act.  But that's where the 'one day at a time' philosophy helps.

This is one of the first times that I have gotten into a chat with anyone and I'm hoping that it helps until I've healed more. 

By the way, I'm originally from Alexandria. VA.

D

Catherine

All of us know exactly what you're feeling.  It is definitely post-traumatic stress syndrome.  It definitely gets better over time.  Most of us were petrified at first, but gradually things get back to the "new normal" and the fear goes away.  Hang in there!

Catherine

danix5

D,

Alexandria Va my husband is a

d-9 police officer there we moved south to Stafford!  Where do you live now?  Still in VA?

dcbkc

Dani,

Actually, I'm in Kansas now!  It's been snowing here for the last 5 hours and more to come tomorrow night!

When was your husband in the K9 unit?  My best friend's husband was also back in the 80's in Alex.! He got tired of it and left in the late 80's.  My best friend took a job as a private cook for these people and her husband took care of the property.  They live in Dayton, VA now.

D

juanita63

I know I had cancer, and I cried when I found out I did.  And I cried when I quit the first onc who made me feel like I would be dying very soon because I was quiting.  But since then I have not allowed myself to "feel" anything about my cancer.  And I think that's a lot of my depression, etc... now.  But if I cried now, 3 years later, I'd feel stupid because it's been 3 years.

danix5

dcbkc,

My husband started there in 1986, went to K-9 in 1989.  Still there today!  Wow you got a lot of snow we got rain.  Not very fun for x-mas!  what is your best friends name?  doug probably knew him.