What's the trick to early diagnoses?

BcMomOf3

When I was diagnosed I was stage III, but the second opinions I have seen actually believe that I was stage IV at diagnoses. I had a breast lump and I went for a mammogram. They told me it was fatty tissue. I then went a year later and that was when I had the diagnoses, same lump, not fatty tissue. At the time they said I was stage III. There was a spot on my arm during the PET scan but they said it was arthritis. I told them I didn't have arthritis. They said sometimes women do and they don't know it. Stupid me, I believed it. I did chemo, radiation, double mastectomy,hysterectomy (since i'm estrogen positive), tamoxifen. My doctors thought I was crazy. They told me I could just do chemo and a lumpectomy. I told them absolutely not, I wanted to be proactive. After I had my ovaries removed they took me off tamoxifen and put me on arimidex. My scans meanwhile had come back all clear. About a year later I started to have terrible pain in my hips. The doctors said that because of the chemo and arimidex my "arthritis" had gotten worse. They gave me pain pills, sent me to therapy for it, chiropractors, you name it. After 9 months of complaining, I was re diagnosed. To begin with they missed the diagnoses. My daughter and I do not have the BRAC gene but I still worry about her. So for all of you that were diagnosed early, whats the trick. I know mammograms, self exams, etc, I will also always encourage my daughter to question everything, but what else. How were you diagnosed early? I worry about my daughter to because she has breast implants. Are tumors harder to detect? 

nikola

I am so sorry You are going through all of this. I can only tell You from my experience. I felt a lump and went to my GP. He was on holidays and resident was there instead. She told me it was most likely nothing but would send me for an U/S. A week later they have cancellation and asked me to come. Dr. who did the U/S booked a biopsy for next day but sent me for mammogram that same day. Mammogram came back clear but she went with her suspicion based on U/S. It turned out I had two cancers close together. After mastectomy they found third one as well.

In my case U/S detected what mammogram did not. My breasts were dense.

Good luck.

debbie6122

BCmom- Im sorry you are dealing with all of this, I would of gotton another dr right away, or at least a second opinion, thats just crap what they put you through, I dont know if mine was caught early or not, the year before i had a mammo and i guess nothing showed up, then 1 year later i had a large mass (idc) 2 other lumps that were dcis and micro calcifactions thru out, never understood how it got to that point in 1 year. Have you gone on the stage iv thread? they may be able to answer all of your questions better and give you the added support and knowledge since you are a stage iv. Wish i could of been more help. love and hugs and prayers for you

tougherthanithought

BCMom-  I am so very sorry you are going through this. I've followed your other post and I think of you and pray for you everyday.

I was diagnosed early, but only because of my own poking and prodding of my body.  I had a baseline mammogram at 37, all ok.  Had another one at 38, also ok.  4 months later I feel a lump high on my chest, near my collarbone.  My thought is that it was there for the last mammogram, but because it was so high, It may not have made it into the compression plates.  I guess theorhetticly (sp?) I could have continued getting mammograms, the tumor would have grown and or spread, and it wouldn't have been "caught early".  But because I was aware of my body, the tumor was found by ME and not the mammo. 

So my only advise for your daughter is to really know what feels normal in your own body.

Sending hugs to you and your family,

Sherrill

lago

No trick if you have dense breast tissue. My tumor was 5.5cm in a A cup breast. My gyn didn't even feel it at my annual exam 5 weeks before my mammo/ultra sound. I was the one who noticed a blood discharge (and I mean a small spec. Initally I though it was just a stain in my sports bra for about a month. It wasn't till is showed up in my regular bra that I realized it was coming from me).

Mammograms, even digital are ineffective IMO for dense tissue. Your daughter is considered high risk do to your diagnosis. she should be getting MRIs. Actually the MRI did find some LCIS in the other breast that was not spotted on the mammogram or ultra sound. That's why I ended up with a BMX.

BTW I barely made early diagnosis. IF it had been in my nodes I too would have been a stage III.

dlb823

After being on BCO for a couple of years, I've come to the unscientific conclusion that the trick is two-fold:  (1) Take every little change in your breasts very seriously; and (2) Go to a breast surgeon/specialist from the get-go.  Do not waste time with a primary doctor or OB/GYN, and unless it's a highly reputable institution, never take a wait & see or we'll check it again in 6 mos. approach. 

It seems to me that most women either have some symptom or concern, or some irregularity is found at an annual mammo, and where the early dx opportunity is lost is when the primary doc, OB/GYN, or rad onc isn't experienced enough to recognize it for what it is -- very early stage bc.  Unfortunately, all doctors are not equally good, and sadly, too many women never know that until they finally get a bc dx after wasting time with the wrong docs.  In my case, I had a lump @ 12:00 that my primary doc couldn't feel, and that a mammo tech probably didn't image the first year I felt it because it was kind of high.  I had even pointed it out to the mammo tech, who advised me only that an exam had not been been requested with the mammo and there was no doctor available to do one.  And because the lump seemed to get smaller if I didn't drink caffeine, it seemed logical to me that it was nothing to worry about.  If I had known to go to a breast surgeon @ a comprehensive cancer center like the one I finally ended up at (and which is one reason I probably sound like a broken record telling women to go to an NCI-designated cancer center), that area would have been properly examined and imaged 2 years earlier, and I would not have ended up with multi-centric bc and a positive node with extracapsular extension, or had to have a mast or do chemo. 

BcMom, I've also been following your other thread and want you to know that I have been very touched by it and pray every day for your miracle.    (((Hugs)))   Deanna

kira1234

BcMom, I've been following your tread on the other board. I pray for you daily.

My cancer was caught when I had my yearly mammagram. The oncologist did feel it had been missed last year, but at that time I had the usual mammagram done. Where I went this year did the digital mammagram, which I guess is better. I agree with dlb823 many dr. miss the diagnosis, i was just very lucky the onchologist who read mine realized there was something there. My Breast Surgeon even said I was very lucky she picked it up.

BcMomOf3

I so appreciate everyones prayers and advice. We are now just praying and waiting for a miracle, and to have everyones support on here, especially while you all are dealing with the disease, is incredible. 

 I so often kick myself for not being proactive enough and appreciate all of your stories. When I was diagnosed I just never imagined that it could happen to me. I had no risk factors, family history, etc. When i got the diagnoses it was like someone kicked me in the gut and threw a paper bag over my head, I was blind, sick to my stomach, and had no idea what I was doing. I was referred to the doctor who was supposedly the best in my area. I thought they would take care of me, but at the end of the day the only person who can take care of you is yourself. When I was re diagnosed everyone treated me like a hypo condriac (sp?) and a pill popping junkie because of the amount of medication I required to get me through the day. I got lectures from my doctor about the number of pills for pain management, and was told they would not prescribe them to me anymore unless i went to physical therapy, because it was just "arthritis". However the therapy was too damn painful. Finally my GP sent me for additional tests, not even my oncologist! 

 When someone's telling you your a hypochondriac and that you are okay, I thought I was going crazy. I just decided to deal with the "arthritis," and take the good news. I thought that maybe I was so worried about being re diagnosed that I couldnt see the positive light and be happy that I was okay. At the end of the day we need to continue to fight and demand answers even if they are not what we want to hear. If I had demanded they look further into the "arthritis" who knows where I would be. At the end of the day I cannot change the past, I just hope my story helps my daughters and other women.

 I really appreciate your stories as well.  

MarieKelly

This is going to sound very radical, but as someone who has worked in the health care industry for many, many years, my advice to your daughter would be to put them on notice. Tell your daughter that if any doctor ever dismisses her concerns about the possibility of breast cancer, she should first politely make sure that person understands that her mother was diagnosed late stage because someone dropped the ball and then that she intends to find the most aggressive lawyer she can if the same ever happens to her. That little statement, in and of itself, should immediately instill a sense of lawsuit fear in all but the most arrogant, which will in turn initiate a more thorough workup than she might have otherwise gotten.  Any mention of filing a complaint or seeking legal advice ALWAYS gets results where I work. Even if they think ordering an MRI or a biopsy is totally unwarranted, they'll do it just to cover their butts if there's even the slightest indication that a patient intends to sue if they miss something.

dlb823

BcMom, another thing your daughter can do is look into the high risk programs some comprehensive cancer centers now offer.  They will do a thorough risk evaluation, and, if she is determined to be more at risk than the general population, they will monitor her more closely, to catch anything suspiscious ASAP.  These programs also make women aware of the scientifically proven lifestyle modifications (exercise, diet, supplements, etc.) that can help reduce risk.  Being pro-active and knowing you're in the best of hands before any specific concern arises should also go a long way to give her peace of mind.    Deanna

yorkshirepudding

I was diagnosed in January 2009, though I first went to my GP 18 months prior to this. She couldn't feel the lump and sent me away...so for the following 18 months I spent every day trying to convince myself the lump wasn't there ( afterall I was 'too young', had no family history and I had followed my mid-wife's advice and breast-fed all my sprogs). Then the lump became painful; this was the last straw, so I returned to my GP and insisted on a mammo (not normally offered in the UK until you reach 50). The rest is, as they say 'history'. My breast surgeon descibed the lump as 'very subtle' and was impressed that I even noticed it! ?? Luckily for me, the 18 month delay in diagnosis doesn't seem to have altered my prognosis - phew!

Anyway, the moral to my story and my answer to the question 'what's the trick to early diagnosis' ...is be 'breast aware'. Get to know your breasts, check them regularly and if you feel a lump or see any changes, get it investigated immediately and don't let anyone convince you otherwise!

Susie123

Mine was not seen by the radiologist. The software on the digital mammogram machine flagged it. I never knew there was a difference in mamo machines until then. My best to you and your daughter. Susie 

Suzybelle

Honestly, I think alot of it is just pure luck.  I had a mammogram in Sept. of 09 and the Radiologist found a suspicious mass.  They called me back in for more tests, and he said very matter of factly, "It's just a cyst."  Fast forward to Dec. 09 when I noticed my right breast (where the mass was) would occasionally get really, really hot, like it was radiating heat, and it would itch like crazy.  I looked for a bug bite, rash but nothing.  This continued to Jan. 2010 when it occurred to me that this was the side that I had had the abnormal mammograms.  I hadn't thought of that before.  Thank goodness my doctor got me in quickly...within 3 days.  I had no idea that the heat-sensation and itching are signs of cancer, which is what it was.

I'm so sorry you are struggling with this.  Cancer is a b#tch and even when we think we've caught it early, it can still bite us in the !#@#.  I hate it.  I hate what it's done to me and to all of us.

Hang in there, girl.

eileen1955

Mom of 3; this may sound a bit callous but you need to expend all your energy on fighting this cancer beast and not waste any of it by wondering how you could have caught it earlier.

A survivor told me that once in a support group after I admitted that I was ashamed (as a nurse) that I let a suspicious "thickening" go for 3 months.    I'll never ever understand why I played doctor and put off an exam for 3 months.    I was going thru a stressful time in life and I honestly believed that it was impossible that one more thing could go wrong.

So I took that survivor's advice and dropped all the self-blaming.  It was zapping all my energy and I needed that energy to fight the cancer.

As for your daughter being high risk. it's good to have mammos and clinical breast exams spread out over the calendar year.   This way she'd be more likely to have something picked up early. some women do all their testing around their birthday and then wait a full yr to be evaluated again.    I had a thorough clinical breast exam done by gyn in Jan of 2003. Nothing detected. Followed by neg mammo in July of that year. Then I went for annual PE and bc was detected.    I should have pushed for further evaluation at the time of the mammo; but a clear mammo to me meant that I was imagining a problem.   

Best wishes to you and your daughter.  I just had preventative bilateral mastectomies this week b/c I just cannot trust that my body will "sound an alarm" if bc rears its ugly head again.