How did you discover your cancer?

[Catherine]

Since many of us found our own lumps, I thought it might be interesting if we all updated our profiles to include how our lumps or how our cancer was discovered. If you want to do this go to your profile, and then to edit profile. I was never good at SBE, but I always believed in knowing your body. Here is my update:

[harrie]

mammogram, showed small calcifications

[mcgle]

Same as Harrie.

Mcgle (UK)

[SoCalGal]

Felt my boobies.

[Brenda_D]

By accident, I brushed against a lump. I had a clear mammo 6 months earlier.

[lkc Gumby]

SBE in shower, 9 mos after " clear Mammo"

[Laurel]

Routine Mammo at age 48, small invasive tumor less than one cm which could not be felt on exam.

[Sheila]

Calcifications on mammo, clear mammo 6 mos before, biopsy of area revealed IDC, then left mastectomy...at age 49.

[alicem]

Microcalcifications on a mammogram at the age of 52.

[whatz]

I was mildly sore on my left breast which led me to investigating (comparing left to right). Found lump on left. Mamo 6 months earlier was clear.

[Montana]

Microcalcs on yearly mammogram

[Margerie]

SBE age 38 (no family history)

[Unregistered]

Both times: MRI

Marilyn

[Lien]

I found a new lump at age 44. Had cysts and b9 lumps since I was 25.

I wondered, Marilyn, why you had the MRI? Did you feel something? Wat it seen on a screening mammo?

Jacqueline

[WolverineFan]

Regrettably, I wasn't doing SBE's. My husband found my lump...geez, what a mood killer!!!

Hayley

[Debbie L.]

It would be interesting to ask this question of those who have died. Let me rephrase that. It would be interesting to know the answer to this question for those who have died of their breast cancer.

I suspect the answers would be very similar.

FINDING a breast cancer does not necessarily equate (alas) with SAVING A LIFE. Most of us on this list, btw, are too new to the game to say our life has been saved.

TREATING a breast cancer - yes, that does save some lives. But again, and alas -- not all lives, not yet.

As for finding your own lump - no one is saying that women do not find their own lumps, nor that they should NOT find their own lumps. I saw a stat that of the breast cancers that are not found by mammography, 80% are found by the women themselves, and not when doing formal BSE. No one is saying to ignore our breasts, nor to ignore suspicious findings in our breasts. The science is saying that doing a formal monthly exam in a specific manner does not improve outcome for women whose breast cancer is detected in this way.

I don't know how to say it more clearly. Take two groups of 100 women. Teach one group to do excellent breast exams and have them do them every month. Tell the other group of women to let us know if they notice anything different with their breasts. The rate of death from breast cancer will be exactly the same in both groups. We could get into the harms caused by the hyper-vigilance of BSE but we don't even need to. Even if there were no harms, why would we advise doing something that makes no difference to outcome?

Why would we want to spend millions of dollars telling women to do something that does not help them?

I don't understand why some of this anger is not directed at the fact that we've been deceived by the screening and awareness propaganda all these years.

Debbie Laxague

[hutchibk]

Hey DL, I would like to take a stab at an alternate take on your conclusion.... Even if there were no harms, why would we advise doing something that makes no difference to outcome?

Nothing makes a difference in our ultimate outcome. We all die one day. From something. If not from a disease or an accident or an act of malice, then from old age. There is no such thing as "saving a life" - it should actually be called "extending a life" - even if it is a firefighter pulling a person out of a burning building.

I really bristle at the theory of "harms caused by hyper-vigilance" because I think women are emotionally strong enough to weather false positives in favor of the power of knowledge.

If the end purpose for all research is to save lives, then we might as well stop now, as nothing in the end will ultimately "save our life." Perhaps the end purpose for all research should be more simply stated as designed to cure disease and remove it as a speed bump in the middle of life along the way to the ultimate outcome all humans face.

As to the quote above, it does make a difference to outcome to the degree that we have some control over our immediate short term outcome. Finding it as opposed to not finding it allows us to take measures to extend our lives, i.e. treating it. I don't know for sure whether or not I would still be alive 6 years later from my diagnosis if I hadn't treated it or hadn't know about it for another few years, but I suspect that given the course of mine, I would not. I would rather have known early and had reasonably "small measure" choices that I tolerate well and incorporate into my life, than find out at stage IV and have less choices, less time and absolutely less hope. Whether that treatment cures it or buys more time, it is valid. And the diagnostics that brought me here (BSE, mammo, ultra sound and biopsy) are all valid, too.

[Becky]

But... at least if you are doing BSE and find the lump you do feel as if you were giving yourself your best shot.

I did find mine and at least felt that at that moment (and every moment of every BSE prior to then and after then) that I was doing myself a good turn - something good for myself and my health. I figure it was better to find it at 1.9 cm (and one positive node) than perhaps several months later at 2.6 cm and 3 positive nodes. It is true that either way, I would probably still be here 5+ yrs later (or not perhaps). However, we are all told over and over again that our prognosis is better the earlier we are diagnosed.

So, I will continue to check my boobies once a month. I've learned the lay of my landscape and my new landscape to know if a new tree is there that was not there before and it gives my mind alittle comfort to make sure its okay. I dread doing it, I have to admit (because maybe something IS there this time) but I do it because I feel it is something I do for my health overall. After all, I've come this far and don't want a brand new bc to take me down just because I didn't even know it was there when I could have.

Everyone's different though.

[Debbie L.]

(warning, it took me so long to write this that I was timed out and had to sign in again, even though it still knew who I was. sorry for the length but Brenda and I do tend to get going)

Hi Brenda,

You and I have enjoyed this debate before (smile). Correct me if I'm wrong, but my understanding is that your style values finding small things. My thinking is that the biology and response-to-treatment is more important than size. Brain mets excepted.

I think when we've discussed this before, it's been about mets vigilance. I think that we've agreed to disagree - noting that it's partly a matter of style and personality although I do have other concerns (like the cost) about ultra-vigilance when we have no evidence of benefit. Again, brain mets excepted. And I do allow that there is the possibility that one day, we may learn that finding, for example, a small liver met and zapping it, as we do with a small brain met - will be an improvement that extends life. But we don't know that. There's a heck of a lot that we don't know.

But now we're talking about primary detection which in some ways is different (we do have bushels of evidence that seems to say that larger is worse and vascular/lymphatic invasion is worse). The argument to that, which makes sense to me, is that those things (larger, more spread) may not be, in themselves, worse things, or even things that happened because of time - but are simply markers that go along with the more-aggressive (faster growing, more invasive) cancers, and thus the worse prognosis relates to the biology that caused the larger size or farther spread.

You are right, we are all dying. But we are also talking here about saving lives in a breast-cancer-specific way and so I think "saving" lives is an okay way to phrase it. If the cancer doesn't return and some other fire gets us at 90 - well then we can say that we were saved from dying of breast cancer. Can't we? (except now there is the argument that some tumors may never threaten life and/or may regress on their own but my guess would be that those are not HER2+ ones).

What else. Oh yeah. Harms. I didn't even go there because I'm not sure it strengthens the argument. But the harms are not just to peace of mind. The extra radiation is a harm (especially perhaps to the BRCA+ cancers) and the biopsies carry the risk of any surgery plus there are some questions about what role the growth factors involved in wound healing might play r/t cancer occurrence and/or growth. And now with MRSA and other resistant bugs, any invasive procedure becomes more worrisome.

But I think the bottom line is that we're back to our ongoing agree-to-disagree place. You are sure that finding a cancer with BSE a month before you might have noted it by chance in the shower will offer you a longer lifetime - whether from a cure or from control of mets. I am not sure of that. I don't see any evidence that says that might be true. And it bothers me that we are/were spending so much money and effort to tell women to do something that we don't know will help them. I'd much prefer that we spent that money finding out more about breast cancer. Especially important right now is finding out which cancers really are a threat. For us on this board, who are HER2+, that may not seem very important, because all HER2+ cancer may be a threat. But with the majority of breast cancers, it's not so clear.

Debbie Laxague
PS: how do you make that quote box? I can do copy/paste and change colors/fonts but when I click on "quote" below, nothing happens. I'm on another list where the quote thing works, so I don't think it's my computer.

[alicem]

I missed the statistics that support the recent mammogram recommendations. What percentage of cancers are found because of mammograms given to women in their 40's? 20%? 10%? What person out there wants that person whose life might be saved - but won't be because of the new treatment recommendations - to be someone they love dearly?

The mammogram that saved my life was done when I was 52. However, it had been too many years since my previous one. Perhaps the calcifications might have shown up on a mammogram 3 years earlier when I was 49 and it still might have been just DCIS, stage 0 and the Her2+++ invasive cancer that had to be treated by chemo would never have happened. I blame myself for this, but I had become complacent. My primary care physician had told me in my early 40's that I would NEVER get breast cancer. HAH!!!

Lets fast forward to the next treatment that might fall under the gun for the next round of "cost savings/harm prevention" - - biopsies. When my calcifications were found, I was told not to be worried because in my particular situation, 90% of the time it would turn up nothing. Because 10% of the time it does turn up cancer, it was the recommendation to have a biopsy. I fell in the 10%. It worries me that the same argument could be made for biopsies in my situation. Statistically, calcifications like mine are nothing. Statistically, 90% of the women are put under the "stress" of a biopsy for no reason. Is the cost of these "unnecessary" biopsies for those 90% TOO GREAT??? In my opinion, NO!! If it weren't for this particular standard of care, I would be facing a different outcome entirely. My mammogram found calcifications. My calcifications led to a biopsy. The biopsy led to a lumpectomy. The lumpectomy led to a mastectomy. The mastectomy FOUND MY INVASIVE CANCER before my lymph nodes became involved!! If it weren't for the biopsy, I believe the cancer would have progressed to the point where my odds of survival were greatly reduced. It scares me that in the future, a women with my scenario might face a totally different result - because it was more important to cut costs.

[Midwest Alice]

Great idea!!! I will see if I can up date mine

[vlcarr]

Felt a lump by accident, went to GYN. By the time I got to her could barely feel it anymore. Sent for a diagnostic mammo 02/09. Told changes to breast, come back in 6 months. Had neck surgery 04/09. 7 weeks after was getting dressed and brushed up against something much bigger than previous lump. Went for mammo 05/09, ultrasound found 2 tumors, one that did not show on mammo. Both tumors had exact pathology report.

[Jackie07]

30 hours before my 'routine' annual mammogram in 2003, I (Hubby) felt something close to the center of my chest. Surgery, chemo and radiation raised my 5-year survival rate to 92% (supposedly.) 4 years later, after losing 3 jobs in three years, we found out (felt very sick -> [one month] early mammogram -> ultrasound)that the so-called scar tissue on my mammograms had been recurrence all along.

I don't think it was mammogram's fault. I think the doctors and technicians need more education about Her-2 breast cancer. Any doubt (in my case, suspected 'scar tissue' and several 'retakes' every time I was in the mammography room) should have alarmed them to refer me to get an ultrasound. (They never had informed me about the existence of the so-called 'scar tissue'.) Even when it was more than 2 cm, they still thought it was 'scar tissue' (The mammo technician declared after the test - he's not supposed to do that, but it gave me the idea what had been happening all four years.) Fortunately this time the surgeon was the one who had ordered it (after I had made an appointment with her) and she finally caught it - realizing she did not have a 'clean' margin. [She's quite traumatized by it - visibly and audibly distraught when she saw me about the confirmed recurrence.]

[Ruth]

Nursing my daughter....
Ruth

[WomanofSteel]

I found the lump on a self exam.

[nitewind]

Like Brenda, I accidentally discovered it by turning over in bed and felt something that shouldn't have been there and the rest is history!

[v-ness]

found my own. tumor did not exist in march. 1.8 cm in august thanks to HER2+. had i not done self-exams and waited for my march 2010 mammo it would no doubt have been far more than a stage 1. why anyone's wasting money on a task force to tell us not to do self-exams and doctors not to teach us to is beyond me. how much money does it take to say "check yourself and here's how"?

[Audrey]

I noticed a bloody nipple discharge at age 36. Went to my gyn. and he assured me it was probably nothing but referred me to a breast surgeon just to be safe. I had a mammogram and ultrasound, both FOUND NOTHING due to my dense breasts. They gave me some cream to put on my "rash"--after no improvement, I again saw the breast surgeon who finally performed a biopsy. I was diagnosed with Paget's disease, stage 0, and underwent a mastectomy. I thought I was cured at that point, but then found out on my pathologist's report that I actually had Stage III invasive cancer with a 15 cm tumor! Yes, that's right, a 15 cm tumor that was not picked up on mammography or ultrasound. I ultimately had a mastectomy on the remaining breast because I had absolutly no confidence in mammograms catching another recurrence. Fortunately, I am still here doing well 8 years later (thanks to Herceptin)(and God), but I honestly don't know what to think about these new guidelines...For the record, I could not feel a "lump" myself, either, I guess because the tumor was so big and directly behind the nipple??? Anyway, I always advise people to ask for the biopsy, especially if you're under 40 and they tell you "it's nothing"!

[Patb]

My breast cancer was found with a yearly
mammogram by a deligent Dr. who kept
reading and reading it, called me in with
a slight suspicion because the tumor was
very deep and hard to see. It was Grade
3 and growing fast. Thanks to him and the
treatment I received I know I have at least
lived three more years. I believe we have
to do all we can and if that doesn't work
we can say without regret we did all we could.
Brenda I agree with you with all my heart.
You are a rock star.
patb

[schoolteacher]

I found my BC after cutting grass at the end of November 2007. My nipple inverted, so I went and had a mammogram the next week and requested a ultrasound.

Amelia

[Cal-Gal]

Mammogram found DCIS--which led to a MRI which found
ILC---

Inspite of having 11cm of DCIS and 4 tumors of ILC--I felt
NOTHING---(evidently ILC is a sneaky type and hides out and is rare to feel a 'lump')

Thank GOD for the mammogram--

[caya]

I had a clean mammogram and breast ultrasound in July 2006, went in for a breast reduction in October 2006. My plastic surgeon found my 1.7 cm. tumour, cut it out separately (in essence a lumpectomy), and the path came back as BC.

When I had a breast MRI before my mastectomy, another 1.0 cm. tumour was discovered, in the same breast. My very dense, premenopausal breasts hid them both. I had been going for mammos since age 40, no family history, just always felt that something might be lurking in my big dense boobs. All the docs concur that the breast reduction surgery probably saved my life, as it was found early.

I constantly press for breast MRIs for younger women with dense breasts - the other methods show diddly squat for us.

all the best
caya

[hutchibk]

I started having an itchy red right areola. Then an itchy red nipple. It would come and go every few weeks. Little by little it started to sting. About 2 weeks before my annual GYN visit, I noticed a small lump in the lower right quadrant of my right breast. My GYN and I talked about Paget's Disease of the Nipple and the lump. Clinically she said it didn't appear to be Paget's like she had seen in the past, maybe it was an allergic reaction to detergent I was washing my bras with. When she palpated the lump, she couldn't determine for sure but almost felt as though it was fibrous. All of that said, she wasn't going to take any chances and told me to book a digital mammo ASAP. My previous mammo had been 18 months before and was all clear. The mammo showed calcifications, and an ultrasound and biopsy a few days later confirmed it was stage2B breast cancer with Paget's Disease of the Nipple.

[suzan w]

mammogram...age 54 I had yearly mammograms since I was 40. No family history of cancer...any kind.

[margiermc]

After exercising at the YMCA, taking a shower, I did a self exam, found a lump, was all DCIS in a lumpectomy. July of 2008

Weeks later, had back pain, went to the hospital. They found kidney stone in the urine, did a ct scan. October 2008

Test came back, lesions in liver, they did a biopsy, and tested her2 liver met.

Had TCH for 10 weeks, became NED. Jan. 2009

Had vaccine for 6 months. June - Nov 2008

Right now, on herceptin every 3 wk.

Doing well, staying healthy.

margie

[juanita]

was brushing crumbs off my chest and found it. did self-exams but not religuosly so i always wondered what cuased me to find it then. it was my grandmother's birthday who had passed away 10 years earlier.

[MJo]

I was five months late for my annual mammogram. Was very busy and decided to skip a year, since I felt I had little risk. (Little did I know!) Then my boss was diagnosed with BC. So I ran in for a mammogram to be safe. I guess my boss and her BC saved my life. By the way, my boss, who is also a friend, was Her2+. We supported each other through treatment, and we were able to support two more co-workersdiagnosed in the past two years, both Her2-

[v-ness]

i was "hyper-vigilant" and therefore found my own cancer while it was still Stage 1. i had a cluster of cysts in left breast in november 2008. horrified that i hadn't noticed them myself and thought 'my god, what if they'd been cancer?' stopped being haphazard about BSE's. then my sister had 2 friends diagnosed the same year with Stage 3 breast cancer. even though my mammogram in march 2009 was clear, i was doing BSE's all the time. never convinced i was doing them right. my paranoia paid off. felt the lump above left breast in mid-august. lumpectomy in late august proved it to be IDC and HER2+. if i'd waited for and relied solely upon my next mammo who knows how differently things might have been. valerie

[loricar3]

Routine yearly mammogram found the 2.5 cm tumor.