My High Risk and Yours

nosurrender

I have learned a lot these past two weeks...
I just wanted to share my story to see if I could possibly help someone.

I was at high risk for a second breast cancer because:

1. I already had BC in one breast- we are automatically at high risk for it occurring in the opposite breast just by that fact alone.

2. I had a highly aggressive, tripneg tumor.

3. I have tested positive to an unknown variant of BRCA2. That means they don't know IF it caused my BC but if it did I am at risk of another one.

4. My sister was dx'd two years after me.

SO- what did I do with all this info?

I was screened EXTREMELY CLOSELY. I had a mammo and breast MRI every six months- I alternated ie: June Mammo- January-MRI- etc.

I had an MRI last March which showed something in the right breast. In April I had an MRI guided core biopsy and they said it was b9. But I also developed a big hematoma. My gyn wanted it surgically removed because it was "changing the architecture of the breast"- but the BS said wait- see if it resolves. It did, because I had a mammo in July that was all clear.

I reached my FIVE YEAR mark in September. Everyone was congratulating me. I wanted a five year scan. I had a PET/CT in October that picked up "activity" in that breast... SAME PLACE.
Everyone said- "it is just the hematoma you had"
BUT the hematoma went away-remember the July Mammo??

Now it is February and I have three tumors in my right breast.

My original cancer was tripneg IDC.
Of these three tumors, one is lobular and the other two are IDC but they all "seem to be" ER+.

I am making appointments and getting more scans and am having a bilateral mastectomy within the next two weeks.

I pushed for the MRIs, the PETs and when I felt a thickening in my breast in December I got the earliest appointment I could with my onc which was in early January and said - THIS IS NOT THE HEMATOMA!

I ate all the right things before my first dx and was a maniac following every study and supplement I could since my first dx.

They tell me that I beat the first cancer and this appears to be a brand new one- a new primary - totally unrelated to the original dx.

Why am I telling you this??
IF you are high risk... and that means if you have had breast cancer also and not necessarily a genetic mutation- GET SCREENED every six months and do not wait. Demand that EVERYTHING be checked out.

An onc who takes care of a friend of mine who is living with mets always says- "You have to be nimble with cancer...always stay ahead of it and never let it get ahead of you"

So please- never miss a followup- always do SBEs- and if something doesn't feel right- GO WITH YOUR GUT. No one knows your body better than you.

Love,g

Indigoblue

No surrender,
Just wrote a heartfelt comment about your experience and lost it...grrr. Similar dx. I totally relate to your experience, except I began this journey a few years ago when the deep achey feeling was ignored because "dense breast tissue" and physicians who thought I was just being neurotic because of my family history, etc.
I wish I knew where one could find a good team of doctors who would explain these possibilities and send us all in the right direction regarding subtype cancers and triple negative truths.

Good luck with all of this, keep us informed.

I once had a kitty named Bearcat who looked just like your pic.

blue

JaxsonHarley

Dear Nosurrender, I also had breast cancer 4 yrs ago, DCIS, in the left breast.This past year, I had a shadowy area show up on mammos. They repeated them a few months later. Then had me have an ultrasound, which led to an MRI. MRI people suggested a biopsy, the Dr. who did my radiation the first time said I could just wait and have another mammo, if I wanted to. But I pushed for the biopsy.I am so glad I did. They found ALH & LCIS in the same breast.I won't play around with this, and take a "wait & see" stance. I am having a bi-lateral mastectomy on March 15th (hell of a date, huh?) with reconstruction.I just can't believe the Dr. had such a laid back attitude with my previous history.Anyway, from one New Yorker to another, good luck with everything and prayers for a quick recovery.Jackie

Cherrie

I was first diagnose 4 1/2 yrs. ago and am having another core biopsy today. We are fearing a recurrence. It is so helpful to hear from people who have been through this. Thanks for your honesty and courage to tell others about yourself. I will be praying for a good recovery for you. You will get through this.

linny

It seems to me that the most frustrating thing about breast cancer is that vigilance and early detection seem to be a myth. Once the cancer is found, it is very rarely in the early stages - by the time a lump is felt (like mine) it is not DCIS. Yes, we can find our cancers but not before they require extensive treatment and/or chemo. I've been very confused and disturbed by this since my diagnosis and following people's stories here and elsewhere. I have several friends who now have, or did have, cancer, or worse, recurrences, who were watched. Also I was pretty stunned when the doctors explained to me that finding mets early has no effect on long term outcome. Therefore in Toronto, they do not do routine scans, etc (just regular follow up).

Linda

Candyce

g,
I will keep this in mind and truly appreciate the advice. I too am on every six months either mammo or MRI. Sometimes we feel too pushy to insist but we must!

I knew I was at risk before dx. I had my yearly mammo. Then in 2004 I had my yearly mammo and it was found I had invasive breast cancer. I was shocked--I did everything I was supposed to do!! It was grade 3 , weakly + and I had rt. mastectomy.

Catherine8718

G,
Thank you for sharing your story. I know I speak on behalf of all of us when I say, we really appreciate you thinking of us during your difficult time. We are thinking of you and pulling for you during your new challenge. We also know that if anyone can tackle this, it's you and it's just another story to add to your list. Stay strong and we're praying for you!

Doc

Thank you for taking the time to share this with everyone. What I learned from reading this is not to accept any statements that start out with the words, "well, it's probably......"
I guess you really do need to be on the lookout for your own interests at every appointment.
Sorry you are facing a big surgery soon, you know you have a lot of admirers and supporters here

rubytuesday

nosurrender, I know how devastating it is to find a new primary. I had my original bc 9 years ago. I had two lumps one of which was determined to be cancerous, the other benign. The benign lump I had for 20+ years and it had been biopsied before. Last year, my oncologist found a new lump which didn't show on mammogram or PET scan. Had it biopsied along with the 'old' lump and BOTH were found to be cancerous. Could have knocked me over and my breast surgeon over with a feather. BS kept insisting that the new lump was benign and I keep insisting that the old lump was just scar tissue......I also didn't quite 'get' that the mere fact that we have had bc means that we are at a higher risk for developing another. Wishing you the very best!!

nosurrender

Thank you for all these responses...
I must say, the more I think about it the more I kick myself for not insisting on an excisional biopsy of the "hematoma"... my gyn wanted me to get it- my onc thought it was a good idea... and they all deferred to the BS's opinion. He said no.
And now that I have seen that he won't operate on me no matter what anymore because of my insurance- was his decision made because of that? Or because he really thought it was nothing???

Hindsite is 20/20- it is also maddening!

Go with your guts girls. And NEVER take no for an answer.

Love,
g

Candyce

g,
If he did that because of your insurance it would be awful! Instead, why couldn't he refer you to a surgeon in your plan. Or contact your insurance company!! Why oh why would he just let this go?

In other words lets hope he really thought it was nothing.

Why do we question ourselves? Because of your post I will be stronger in this area.

Please keep us posted how you are doing. When is your surgery?

Please know I am thinking of you...

nosurrender

Surgery is on march 6th.
I am trying not to go to that bad place that makes me think my BS who was once my hero made a financial decision instead of a health decision when it comes to me.
But now that he has dropped me like a hot potato I am beginning to wonder more and more.
I will think about that after all of this is over. AT worst I will tell him that I wish he had done something about this last Spring. That way I can clear the air and my head.

Thanks for everything!

Love,g

GreenHeron

No Surrender...

I think your message is right on. I think no matter how well we love our doctors, WE are the keepers of our own bodies, and we have to push for what we believe.

My mother was told years ago that she could not have a second child after 3 miscarraiges. SHE did not believe it and finally found an MD who was willing to try. Here I am.

When I was DX with BC, I had no family history. My doctor kept pushing ME to get a genetic test...wala, BRCA2 mutation. The cancer center team met and told me straight out that because my breasts' size and density, they could not guarentee they could even find the next occurance with routine checks...

So, I did the bilateral prophalactic surgery.


I don't look back much, nor kick myself for wanting to do things differently, but I KNOW that MY MD's Pushing in the absence of my own PUSHING for my own health saved my life. I now make any doctor, no matter how close to them I am, do what I feel I need done. I am reponsible for my health. Do not abdicate this!!!!

G, good luck on the 6th. Let go of your anger at your BS. You need your energy for YOU. I would bet that your BS will not make this same mistake twice. And I will bet that you will kick butt with this BC.

STrength and peace,
Flashdif

Ter

No Surrender,
Your absoutly right on the nose with all you had to say....IF only doctors would listen, it took them 6-8 yrs to get their degree, so, it took me 53 to gain this much wisdom...

Ter

Anonymous

g,
I remember you saying once that you had radiation. I went through 6 weeks of rads, and after several months developed what my docs. say feels like scar tissue. I feel something thick and hard in the radiated area. Is that still scar tissue? How long does scar tissue stay hard? It's been a year since my last radiation.

Thanks.

Raye99

Thanks for all of the words of wisdom. So true: often times by the time the lump is discovered, it is large and has moved into the nodes, as in my case.

I finish rads next Friday and am meeting with my bs and ps the following week to schedule proph mast on my other breast and reconstruction.

G, thinking of you...hope you are resting comfortably.

xoxo to all.
Raye

CasinoGirl

Hi all,
I was originally dx about 2 1/2 years ago, with Stage I, grade 2 IDC, no node involvement. Did chemo, rads, had the ovaries yanked, been on Arimidex for 1 1/2 yrs, and my last two mammos in my "Gnarly Girl" have come back "suspicious".

The mammo in Sept 06 was suspicious, so I had additional views taken, and the radiologist decided the microcalcs were probably a result of rads.

Had a mammo last week with digital technology (my 1st digital) and although they let me leave thinking I'd just follow up in in 6 months, after consulting w/ onc, radiologist and onc now want me back in 3 months.

I understand the digital technology develops a much clearer image than film, so now I'm wondering if the microcalcs from Sept are clearer now, thereby causing suspicion?

Received a letter Sat stating I should repeat my mammogram in 3 months (instead of 6) although my findings are "probably benign."

Makes me wish I'd just had the damn thing cut off to begin with instead of the lumpectomy, but I did what I thought to be best for me at the time.

Thanks for letting me ramble and rant girls.

Donna

nosurrender

If I had to do it all over again I would have taken my gyn's advice when I was first dx'd and had bilateral five years ago. But we can't change the past. We just have to use it as a stepping stone - a starting off point.
Brenda, I did get scar tissue in the radiated area and it was just that, scar tissue. My second cancer came to my other breast.
Flashdif, I have a dear friend with the cutest little boy who was told he had no heartbeat and she should get an immediate D&C. She said she wanted to wait a week. A week later there was a heartbeat and he just turned 8. You are SO RIGHT.
Ter, I agree!
Raye, Thanks for the kind words. Congratulations on finishing rads! My breasts were watched so carefully and yet i had three tumors and spread to the sentinel node- not sure how many nodes yet, don't have the path report in. As I said before- I would have done what you are planning five years ago if I knew this would happen to me now!

Donna, get a breast MRI. They show more than ANYTHING. Even more than a digital mammo. Don't give up until you get one and don't wait and see- I actually ignored my own advice I give everyone else and waited 3 months- and look what happened to me. Make sure now. Then you can deal with it right away. My breast MRI from Oct picked this damn thing up and my docs "convinced me" that it was from the core I had in April. It wasn't. Ramble and rant all you want!!

Love to all,
g

JaxsonHarley

Donna, i totally agree with nosurrender, get an MRI, it shows everything. I had DCIS 4 yrs ago. My mammos began to have a suspicious are last year, so they kept me coming back every 3 months for another one.They were sure it was scar tissue from previous surgery. Finally had an MRI at the suggestion of the new radiologist.Thank God I did.That led to another biopsy. They found ALH, & LCIS in the same breast.I am now having bi-lateral in 3 days, with reconstruction.I only wish I had the mastectomy instead of the lumpectomy the first time.But again, thinking I was doing the right thing at the time. I wonder how many lumpectomy patients regret not having the mastectomy after a new dx? I bet it's alot.Anyway, Donna, push for an MRI. Love & (((hugs))) Jackie

CasinoGirl

Thanks for your input girls. I am still waiting for onc to call me. If she doesn't call today, I'll call her back tomorrow. I am going to push for an MRI so I'll have a better idea of what is or isn't going on!

Donna

JaxsonHarley

Just thought I would post a follow up here. I had my bi-lateral last Thursday, on 3/15.I am healing well, had a lat flap with expanders at the same time. My pathology report came back.......My left breast, the one that originally had cancer, is full of 2 types of cancer.Tubular & Lobular. I as well as the surgeon are just shocked that my MRI a few months ago, did not show any of this!I am now facing chemo, they are HER2-pos, I thank God now I did what I did, or they might not have found this! Be ever so cautious of "waiting & seeing" In my case, it could have been much worse! Jackie

CasinoGirl

Jackie - glad to hear you're healing well, but what a shock! What is the explanation that the cancers didn't show up on the MRI?

Take care.

Donna

JustTurnedForty

MRI's are not 100% correct. Pathology is the only way to know "for sure".

maryannecb

Donna, my radiologist had only just started reading MRI's and did not see that it was abnormal. Reading MRIs needs and experienced radiologist and like JT40 said no teat is 100%. Even Pathologists can be wrong....

That said, we can only do our best, the docs too.

Fists up!

CasinoGirl

I've never had an MRI, and am waiting for nurse to call me and let me know when it's scheduled.

My last 2 mammos have come back "increase in microcals - probably benign", which I find little comfort in! I am hoping the MRI, along with the last 2 mamos can offer some clarification one way or the other.

Donna

Anonymous

I recently had a bone scan. My oncologist didnt like the radiologists summary so he went and looked at the x-rays himself. 2 fractured ribs and probably osteoporosis. (whew). Getting a dexascan tomorrow.

I think it is very important to have tests post treatment, even if it is scary.

Nicki

lilahope777

Nosurrender - Can you tell me more about your unknown variant of BRCA2? I'm in the same boat - a variant/polymorphism of BRCA2. While we have no family history, one of my sisters was diagnosed right after me so all 5 of my sisters had the genetic testing done. While a few have the same polymorphism, my sister who had bc did not and therefore, per my oncologist, the significance of the polymorphism is low.

I am still contemplating having my ovaries removed. Also, can one have a prophylactic mastectomy after having a lumpectomy, chemo and rads? I just don't want to deal with this again and it stinks that you do!

Janet