I wish I didn't know now what I didn't know then.

bw49

wow !!! Is that true 25-30% it will come back no matter what? What can you do?

Juliecc

Bw49, that's what I heard, too. I wish I didn't know that!

RaiderGirl

Minivan,This is an optimistic day

So, throw out that nasty 25%+recurrence rate because that rate includes all breasts cancers Stage 0 through  Stage 3. Includes all receptor types, and HER .  Includes all grades, and if differential or not. It also does not specify if the patient completed or complied with therapies.  I would think that recurrence rate is  effected by patients that choose not to complete chemo, or rads or adjunctive therapy.

 I personally know a woman that had a lumpectomy, skipped rads, no chemo and will not take the AI. Its two years now for her and she says she is free of disease. I wonder if she had any follow-ups.  

So, those stats need to be refined before I will accept it.

 

 

 

Beachbum1023

RaiderGirl, we all know the stats are posted with chosen results, but there is way too much info left out for me.

I wish I didn't know now what I didn't know then - Stages do not go in order, 0 - 1 - 2 - 3 - 4 AINT'T NO 5

mebmarj

I wish I didn't know now what I didn't know then...

...how the walks and fund raising events people did with/for me didn't really do diddly squat to help anyone I know. Yeah, major disappointment there.

...that most people who knew me before breast cancer, think of me immediately when they see pink ribbons now.

...that just because insurance says one (highly recommended) dr is not on their list but another dr is- maybe you should still look elsewhere, but hindsight is 20/20.

tangandchris

where should I start....

I wish I had asked more questions about reconstruction and had known that it wasn't as easy as the ps made it sound.

I wish I could remember what my breasts looked and felt like.

I wish never had to worry about canicer again.

SugarCakes

kaybe, I haven't read the article about mammography detection rates yet. Was just checking the board before getting up and getting dressed, but my thought is ...do those stats include detection after a woman feels a lump herself? Hindsight is 20/20. If I knew then, what I know now, I would have pushed for ultrasounds almost two years before feeling my own lump and ultimately being diagnosed.

SugarCakes

also, if mammographies are so great and effective, why aren't they conducted and covered for younger women. I'm sorry, this has set me off this morning. I will find where I found my "stat" as well and post it. Newbies getting information... If they are here, it doesn't matter much, does it? Misinformed or not, we have it, and I for one am telling every woman I care about (including 4 sisters who also have dense breast tissue) to be their own advocate, don't accept the "oh this is normal for your age", and push for more than mammography. Also, ask for the pathology reports regardless of what is told to you verbally.

rozem

I wish i didnt know how truly sucky it is to be put in to early menopause. That treatment does not "end" for a very long time (10 yrs on this crap?!?!). Feeling like your youth was taken way too early. I know it pales in comparison to the alternative but feeling 90 in your 40s is ni fun.

SpecialK

sugarcakes - mammography is not an ideal tool for dense breasts, which younger women are more likely to have.  Ultrasound and MRI are often better tools, but unfortunately are used more infrequently, often aren't approved by insurance for screening, or only when a palpable lump can't be seen by mammography.

Chrisrenee77

i wish at 35 that my first EVER mammo would come back positive for Stage 2 IDC and Stage 1 DCIS.

I wish that I didn't know that I had a possibility of coming down with this disease as my granny was diagnosed with BC at the very young age of 31.

I wish I didn't know the "odds" of survival.

I'm glad that I have an amazing husband who has been by my side for all 5 of my surgeries.

I'm glad I have been able to watch my first born walk across the stage to graduate. That was my first goal after being diagnosed

I wish I didn't see my granny crying after I was taken to my room after surgery. Still makes me cry thinking of it.

I'm glad I knew how strong my mom is, she says she's not but she really is.

I wish I didn't have to worry about my daughter possibly getting this damn disease.

But I know that this has made me stronger.

I know that I love my family more and more everyday.

SummerAngel

Kayb, I've been doing a lot of reading and this is just one article referring to the recent studies about the effectiveness of mammography:

http://www.reuters.com/article/2014/02/12/us-mammo...

keepthefaith

I think part of the reason that mammography is more effective in older women, is because of the density of the breast tissue. As we age, generally, breast tissue becomes less dense, more fatty and therefore, easier for the mammogram to read. The younger you are, usually, the more dense your breast tissue. There are 3D mammos now that are supposed to be "better" for dense breasts. Not all clinics use them. There is nothing that is 100% perfect, but at least we have more options than our grandmothers did. If you are "high risk", it may be recommended that you have mammos early and/or US and MRI. So, I guess "aging" has its' perks!:)

RaiderGirl

tangrand:

Don't laugh. I took pictures of my breasts before the surgical assault. Its just for me.

Beachbum1023

I wish I didn't know now what I didn't know then

That one day I would be able to lay on the couch to watch a movie, and have a level place to put the popcorn! WTH?

7of9

I am glad I didn't know that my dad was going to die of a heart attack 10 days after my double mastectomy. We spend every Friday / day after my treatment together. He'd drive me to my Nupegin? shot and then we'd go see a movie, take a bike ride etc...one of the last Friday's we sent shopping for my new patio set. I think of him almost everytime I sit at it.

I am glad I didn't know he was going to die the day after I had a barbecue so we could enjoy it...my mother thought I was nuts for having a small family cookout 9 days after my mastectomy but I felt great and relieved! He was with his family the evening before and last time I saw him was with a smile.

I am not glad he died the day before I got my surgery results - no nodes, clear margins.

I wish I knew before /during neoadjunct chemo that my hair would come back, albeit darker and grayer.

I wish had known that I would NEVER primp my hair for more than 5 minutes again after loosing it and it coming back. If it won't style in 5 min, ponytail time and on to something else!

I wish I had gotten the swollen lymph node biopsied before neoadjuct chemo. I was too scared and the doctor told me they'd treat it the same either way (if it was cancer or not). May have done radiation after treatment but there was no cancer in the 2 nodes they removed so either it wasn't there or chemo zapped all (most?) of it. Seek ye knowledge...I ran for cover from more potential bad news and could have screwed myself out of lowering my recurrence rate further with rads.

I wish I didn't know the average recurrence is 3 years out. I almost don't want to celebrate 3 yrs coming up soon.

I am glad I now know it's ok to re-allocate some retirement money (since there's a 30% chance I won't be here to spend it, 30% now just went for my new kitchen, living room, vacation and a boat!).

I wish I didn't feel at times like I'm at any given moment 2 weeks away from a terminal diagnosis (any pains over 2 weeks long we are supposed to report).

I wish I didn't (you will all think I'm horrible) feel like every funeral I go to is a blessing that it's not me.

I wish I didn't secretly want to slap every SINGLE person who tells me to slow down, enjoy my son while he's little. My goal is to see him grow up with a mother. The sooner that happens, then I hopefully won't be such a heartbreaking loss to him if he's grown and settled on his way.

I wish I didn't cringe when my son tells me how he'll miss me when I die (sometimes at bedtime (I think it's a 5 year old thing / on days we talk about my dad/his grandpa being gone).

I am damn glad I knew enough - that I had to do it - despite not wanting to find anything...I did self exams including the one I did in the shower that January.

angelia50

I can totally relate to the statement about retirement. My husband and I had always talked about when we retire and it wasn't really that we planned to do anything, but go fishing or something like that but I tried to save and we are approaching the time, he will be 62 next March, and I really was worried about him not working until 62 but after this, I realize, neither of us may live to be 65 and we can't put our whole life on hold, planning for when we are older. So, last year, I wanted to go to Florida for fall break and we went. We have not gone for several years with our children and grandchildren and I said this time, I am going and I'm so glad I did. Lots of things I would say we will do later and I now realize, later may never come.

SpecialK

I don't know if I am unusual but I was diagnosed at 54, nine years after a total hyst/ooph - so surgically menopausal for nine years - and still had breasts that were dense enough that my palpable, larger than 2cm, mass was not seen on the  mammogram.  I also had an additional area of DCIS that was not seen.  An irregular shape was seen on the ultrasound that followed five minutes later, but it was not obviously a malignant mass.  I was fortunate that in military facilities if you have a palpable lump that is not seen with mammography you have an immediate US.  I have always been diligent about annual screening due to long standing fibrocystic disease - I always had multiple cysts bi-lat at all times so self-exam was pointless.  After I was diagnosed I went back to the radiologist that insisted I get a biopsy - he called and made the arrangements himself - and thanked him for being so diligent.  I feel like he's the one who saved my life. He asked me back to his office and wanted to re-check my mammo films now that I was diagnosed to see if he could detect anything - zip, zero, nada. I was node positive and Her2+, so if we had "watched and waited" I might not be here typing this almost five years later.  I also know that I do not image well, regardless of the modality - a pelvic US missed the 3cm pre-malignant ovarian mass found on post-op pathology after the hyst/ooph, and pre-BMX MRI missed one of the nodes at .5cm found after a positive SNB and ALND.  This is one of the reasons I decided BMX was the best option for me, and even with a ridiculous surgical saga I have no regrets.

RG - I have that same photo

RaiderGirl

Special K and KayB

Nothing was felt with self exam. Still don't understand how a 3.2 cm tumor, near the skin was unpalatable by me or PCP. The mammo caught it.

So, when I go for the quarterly visit to the MO and he does a breast exam, I walk away feeling like its a crap shoot.

Stupid comment: I was told I just didn't know what to feel for Duh really? I thought I was suppose to feel for a lump..

Jennie93

Stupid comment from years ago: "Your breasts are so small if you ever have even a teeny tiny lump you will feel it right away."

Well, duh. My tumor was never a "lump". It was filling up a good deal of the breast, but it had "taken over" (for lack of a better term) the tissue, not "in addition to" it, if that makes sense.

shorfi

I with I had known that having BC made me high risk. I had no clue until I was diagnosed a second time with a new primary. Quite upset with my breast onc that she never mentioned this to me.

Bcky

I wish I didn't know now what I didn't know then. That my whole life BC dx forward would be about over coming fear from the moment I wake until bed time. It is always on the back burner in my thoughts even when I am living my life and laughing. Am I going to die early from this? Next year? Next decade?

Lucy55

ugh.. I know what you mean Bcky..Even when I'm chatting and laughing with people I can never fully forget it.

Beckers

Just browsing and wanted to tell you this is a great thread. Thought provoking. I have and still feel like I'm missing something. I hated statistics. How can my BC be a "good one" when an insurance agent told me I can't buy life insurance because I am now considered "uninsurable." How can I say I am a "survivor" given I know the nasty cells can be lying somewhere in wait. This cancer cannot be considered in remission because it can hide out and pop up in a surprise attack 15 years from now. We can only be NED. How do I know the one sentinel node was enough? I relate.

But....I have learned to move forward as life went on with or without me...

BC2015

I wish I didn't know now what I didn't know then

1) that when I felt that dull pain and tingling it wasn't nothing and that I should not have waited an extra month to have what became a lump checked out

2) that I would come to despise medical offices and their staff even though they are "providing me life saving treatment" and would find myself horribly wishing they would learn to be more sensitive by having a similar experience ( I feel guilty about that.....)

3) that I would become afraid of opening my mail for fear of the insane bills awaiting my credit card

4) that i let work and other peoples personality deficiencies make me doubt myself and stress myself into ulcers and probably cancer

5) that I didn't show/express love more - but I am fixing that now

6) that I didn't get on 3 planes and fly cross country to my childhood best friend when she was dying of BC. But she was one who didn't talk about it.... Unlike me - I can't seem to shut up about it

7) that I haven't said how great this site is - I have learned more from you all then anyone of my doctors who only keep saying "it will be fine" just.... "Cut this/radiate that and swallow these" ....

Thank you all! Keep sharing

Bcky

I wish I did not know now what I did not know then. I learned almost a month after my dx that Lobular cancer was found amidst the other cancers. I learned what that entails after my left MX months later. Yes. I thought I was gonna die a very old lady from old lady stuff. BC at 46 yrs old. I am no longer happy go lucky for sure. Happiness requires work now. This reminds me of sneaky cancer. Weed like and can pop up anywhere;anytime. I am not friends with it and it is NOT A GIFT. I had a spiritual guru friend tell me it was a GIFT. LMAO! NOT.

eaglemom

I guess I'm still pretty early into all of this and still learning lots that I never thought I would.

I wish I didn't know now what I didn't know then; that just because it's a small, grade 1 tumour does not mean it's an early stage or stage I.

Janett2014

Yes eaglemom, I remember getting educated on BCO about stage and grade, two very different things.

kittysister

What a great topic, RG. I've read every response. For some reason, I feel more free to post my thoughts and feelings here than anywhere else. So thank you!!

I WISH I DIDN'T KNOW NOW WHAT I DIDN'T KNOW THEN ...

1. I wish I had known it would be best to find a breast specialist (or at least a breast surgeon), instead of just a regular general surgeon who does all kinds of surgery. I might not have had a hematoma that had my breast swollen to 3 times it's normal size, wouldn't stop bleeding, and requiring a second surgery ten days later.

2. Since I wouldn't have needed the second surgery, I wouldn't have this "dog ear" problem on my side now. After the second surgery, I lost a lot more breast tissue. A lot more. Now my breast looks like a shark took a big bite out of the side of it. Same surgeon, because in my case, it had to be "fixed".

3. I wish I hadn't read online reviews of surgeons. I trusted the several reviews of glowing recommendations. For some reason, I trusted them. And for all I know, the office staff could have written them! But I didn't know anybody else who had had a lumptectomy, so I didn't know of anybody to ask.

4. Before I had surgery, I even went to an all afternoon "Multidisciplinary Clinic" at the hospital. I had another surgeon, a radiologist and an anesthesia specialist look at the reports of my biopsy results and look at the CT scan. All three of them told me it was only in the breast, not in the pec muscle and not in the lymph nodes. They were all wrong. What a waste of time.

5. I wish the surgeon there at the clinic hadn't said "I don't know what you're so worried about - it's only a matter of taking out the lump, a few rounds of radiation and a little pill every day". It was downplayed as much as anything ever was .. and made me feel like a stupid worry wart.

6. I wish I had known ALL the facts about radiation, side effects and possible complications. I think I could have handled just the two open places on the bottom of my breast and the awful day and night burning. When I told my doctor there at the Rads place I was running fever every night (it was always back to normal the next afternoon), vomiting during the last week before I had to stop the rads at round 15, and having breast pain that doubled me over, along with a feeling that I was going to pass out, I was told those were not side effects from breast radiation.

7. After another CT scan, I was told I had a seroma. A few weeks later, I went to another doctor for his opinion. What I had wasn't even a seroma. It was damaged breast tissue from the radiation that I was told will never get any better. I still suffer daily and probably always will.

8. This doctor (in the same medical system) told me the Rads doctors don't ever tell anybody the truth and if anybody ever has to stop, they make their patients feel like weirdos because they had to stop. I don't know if it is because they know they lost money for this particular medical system, or if it is because they are afraid it makes them look bad.

9. I wish I had never told anybody on Facebook about my breast cancer diagnosis. I don't know if some of my friends are afraid of me now, or afraid they might get it. It's a toss up, but some avoid me like I have the plague.

10. I was on estrogen for 20 years. And yeah, I was told the benefits outweighed the risks. I especially liked being told it was good for my heart. Needless to even say, my tumor was estrogen positive.

11. I wish I didn't feel like I have ruined hubby's retirement. He retired this past year. We had planned to have some fun, travel a little and just enjoy life. Instead, most of the last months have been spent in medical offices. Even though he hasn't really complained, I can see how unhappy it's made him and the worry it has caused.

12. I wish I didn't go to bed thinking about my BC and waking up thinking about it. I am mostly obsessed with it. The only time I am not really thinking about it is when I am listening to somebody else's problems. But I try hard not to let people know this, which is probably causing even more stress.

13. I wish I didn't almost hate the entire medical system. That's right. I just do not trust them anymore. But even more, I hate this disease. (Don't we all).

14. I wish I had found these boards a lot sooner. Everything might have been different if I had gained more knowledge or even known what to REALLY expect. I don't post a lot, but I read. I cry. So many of the posts have brought me to tears.

tjh

kittysister... I have not had your experiences, can you change clinics? Perhaps a PS that can fix the other's mistakes? It sounds like the whole clinic system needs to be reported. Thoughts, hugs and prayers foe you.