Recurrence after 12 years

[jaykay]

Hi – I’ve been a “lurker” for quite a while and don’t consider myself a “newbie”. I was diagnosed with Stage 1a breast cancer in February, 2000, post-menopausal. Er+/pr-/Her2+++. Invasive, moderately differentiated ductal carcinoma, very small (3mm), node negative. Excisional biopsy and follow up lumpectomy with SNB, left breast. No Herceptin or chemo recommended due to very early stage (2 different oncologists). 5 weeks of radiation, 4.5 years of Tamoxifen (torture!) and 5 years of Femara (not too bad but hell on the bones). Regularly visited oncologist, regular mammograms, MRI’s, bloodwork. Oncologist actually mentioned the “c” word. Completed the Femara in January 2010.

I found this site while researching Her2 years ago. Prior to my diagnosis, I had worked with a woman who was Her2 positive and was in the clinical trials for Herceptin. She flew down to Duke University regularly and ultimately passed away. As I mentioned, I’ve been a lurker for years and have read your stories, shed tears for those who have passed away and rejoiced for those who survived.

Fast forward to September, 2012. Regular diagnostic mammogram, immediate ultrasound and needle biopsy. They found a lump on the right breast, 2.3cm (wtf, where did that come from?). I didn’t need to see the biopsy results to know it was cancer. A couple of days later, I received the results – er+/pr-/Her2+++, poorly differentiated infiltrating DC. I knew I would elect to have a bilateral mastectomy because I could not go through with this a third time. Had a consultation with my oncologist as well as my original surgeon. Surgery first, then chemo (taxol 6x) with Herceptin for a year. Aromatase inhibitor tbd. Had my surgery last week (bi mastectomy reconstruction/tissue expanders with SNB and port placement), doing pretty well and expect to begin chemo within 3 weeks or so. Very scared about the chemo. Final pathology report is not in yet. And, btw, my tumor marker (CA 15-3) was 18. Obviously this is not a good indicator for me. Had BRCA testing – negative.
Sorry for the length of this. I’ll fill in my signature info once I get the final pathology back. This recurrence has really taken the wind out of my sails

Jaykay

[chrisy]

Hey Jaykay,
What an unexpected and unwanted shocker. But I like your attitude - anyone who uses wtf in the same sentence with lump on breast is ok in my book. I usually shout it out, myself. WTF. I also had a big shock, going from stage 0 to stage IV! Talk about wtf.

If you've been researching her2, even here, you should know that while it is fast growing and aggressive (hence the 2.3 cm out of nowhere), the game has changed completely for Her2 positive cancer, it is now considered a more "favorable" prognosis. Since you are "chemo naive", you have a great chance of responding very well to treatment as the cancer has never seen the kind of weaponry you will be bringing to the fight.

One question, do they know for sure his is a recurrence vs. a second cancer? Not that it makes any diff in your current treatment path, but it is a question.

I know this must be a crushing blow for you. Try to at keep in mind that you are (still) dealing with an early stage cancer which is very treatable. More and more I also hear the "c" word used in connection with early her 2 disease, so why not expect that to happen for you. Having been in mostly targeted therapies for a longtime, I have become quite Whitney about the chemo side effects I am now experiencing. BUT when I had my initial chemo TCH I had zero bothersome s/e. dont claim the side effects until/unless you actually get them!

Sorry you had to come out of the closet, so to speak, but you already know we are all here to support and encourage you.

Take care
Chris

[chrisy]

Hey Jaykay,
What an unexpected and unwanted shocker. But I like your attitude - anyone who uses wtf in the same sentence with lump on breast is ok in my book. I usually shout it out, myself. WTF. I also had a big shock, going from stage 0 to stage IV! Talk about wtf.

If you've been researching her2, even here, you should know that while it is fast growing and aggressive (hence the 2.3 cm out of nowhere), the game has changed completely for Her2 positive cancer, it is now considered a more "favorable" prognosis. Since you are "chemo naive", you have a great chance of responding very well to treatment as the cancer has never seen the kind of weaponry you will be bringing to the fight.

One question, do they know for sure his is a recurrence vs. a second cancer? Not that it makes any diff in your current treatment path, but it is a question.

I know this must be a crushing blow for you. Try to at keep in mind that you are (still) dealing with an early stage cancer which is very treatable. More and more I also hear the "c" word used in connection with early her 2 disease, so why not expect that to happen for you. Having been in mostly targeted therapies for a longtime, I have become quite Whitney about the chemo side effects I am now experiencing. BUT when I had my initial chemo TCH I had zero bothersome s/e. dont claim the side effects until/unless you actually get them!

Sorry you had to come out of the closet, so to speak, but you already know we are all here to support and encourage you.

Take care
Chris

[lkc Gumby]

Hi Jaykay,
I am sorry to read about your recurrence. I have not had a recurrence but I can tell you my original tumor popped out of nowhere, and it was between 2-5 cm. I have a strong family HX of BC and was diligent about mammos since age 30 and SBE. Anyway, I was dxed with an aggressive erpr neg, and HER2 pos BC with lots of nodes, and really sucky prognosticators. Stage IIIC was really a shock.
Anyway, being a nurse and having worked in Oncology I was still fearful of Chemo. I am not going to say it was fun. But very doable. Herceptin is a breeze.
After everything was said and done I had both breasts removed and completed my chemo, rads and herceptin. That was over 7 years ago and I feel blessed everyday.
It will get easier, as you get a clear plan of attack.
Take care.

[Hopeful]

Jakay,

I am very sorry this has happened to you. I wanted to share this article with you that quotes many of the doctors who do research on Her2+ bc, although it does not address that specifically: http://www.medicinenet.com/script/main/art.asp?articlekey=50545. I was trying to find an article I read in the past few months that said that there were no local recurrences, just new primary breast cancers. I think since your original cancer was in the left breast and the new cancer in the right breast that it could be considered a new primary cancer and not a recurrence of the original cancer.

Wishing you the best of luck with your treatment plan,

Hopeful

[jaykay]

Hi ladies,

Thanks for the responses and encouragement - wouldn't have expected anything less.

Chris - yes, out of the closet, so to speak. To be honest, I did think "recurrence" vs. "new" since it was the same pathology as the first go round.

I'll have to take a look at the link Hopeful sent and ask the docs.

Best,
Jaykay

[karen z]

I am so sorry to hear your news. It must be shocking to say the least. Keep what our very knowledgeable Chrisy says in mind. It is a different time/different ball game for fighting HER2. You have many resources at your disposal now that can be used to get you back to where you were.

[Laurel]

Hey, JayKay!

Glad you are out of the shadows! You strike me as one of us TOB (tough old broads) so I think you will sail through this second go 'round with the beast. I agree with Hopeful that this is a second primary. It is odd that it has the same signature. Sounds like your nodes are clear, so off to chemo-land, Herceptin, and back to life for you (ok, no crystal ball, but full of optimism for you!).

Chime in from now on and keep us posted on how you feel after the first chemo. We are here for you!

[sassy]

Hey JayKay!

Sorry you are on the roller coaster again, but the ride is very different as Chrisy says. Your prognosis should be great.

Keep in touch--we are all here when you need us!

[Jackie07]

Hi Jaykay,

My BC journey is very similar to yours. My recurrence was also more than 2 cm and I had two lymph nodes involvement. I was treated with TCH and then weekly Hercetin. Because of a congenital heart condition and previous anthracycline treatment, I was only able to get 4 weekly Herceptin after 18 weeks of TCH, far short of the now standard 33 weeks (11 treatment every 3 weeks)

But I've been doing well. No recurrence, no problems for the past five years. Even the lyphedema (caused by a bout of cellulitis from bug bites in the back yard while picking figs) has improved to the point that I'm not wearing my new sleeve and glove while typing this. So hang in there. The treatment is doable. Eat well and sleep well plus daily exercise (30 minutes walk does wonders - it increases the release of endorphine which improves our immune system besides making us happy.)

Yes, there will be times you will feel so tired and so frustrated. But you will get through it. [Some of us even 'worked' through chemo...]

Sending you good vibes.

[Emy]

So sorry to hear of your recurrence...mine happened after 9years, and I was told that the 2cm spot on my lung was lung cancer..I was shocked...I never smoked.....after 1year of being treated for lung cancer, a spot was found on my liver....everything was retested from 2001, 2010, 2011....it was always breast cancer....started herceptin in sept 2011 ....added tykerb in may 2012...tumor marker still down...

[AlaskaAngel]

JayKay,

At 10 years out and still with NED, I'm not looking for trouble. However, the fact is that most of those with a history of b.c. get far more regular exposure to radiologic testing, and radiation of any type is known to cause cancer. So it has always seemed likely to me that some percentage of those of us who have been NED for a long time will face a repeat diagnosis of breast cancer. I'm sorry you are having to deal with it again.

A.A.

[KsGal]

:( Im so sorry to hear about your recurrence, after such a long time. Im sure praying for you, and thank you for posting.

[jaykay]

Yep, I am a TOB (but not that old :-)). Right now I just can't wait to get these #$%^drains out.

[Pray]

Welcome Jaykay, I am so glad you joined us. I was pretty good at lurking too! Gods blessings to you and your family. I will be hoping and praying treatment goes well for you.

Peace my friend,

Nancy

[Mtngrl]

Dear Jaykay,

As Chrisy said, it doesn't make any difference to your treatment plan, but just on the evidence you give, I'd say you've got a new primary cancer. And that happens. I know two women who had two separate bouts of breast cancer many years apart.

The difference is that you can still think of it as curable. (As I understand it, that's also true for a "local recurrence.") Your cancer is early stage. The odds of beating it for good are in your favor.

Hang in there. Thanks for deciding to quit lurking. There's always room for one more (though we all wish to hell there were no need for it.)

[Hopeful]

the fact is that most of those with a history of b.c. get far more regular exposure to radiologic testing, and radiation of any type is known to cause cancer. So it has always seemed likely to me that some percentage of those of us who have been NED for a long time will face a repeat diagnosis of breast cancer.

A timely observation: http://www.medicalnewstoday.com/releases/251666.php

Hopeful

[Becky]

Hi

I have not recurred or have had a new cancer (yet and hopefully never). However, having had lumpectomy and having both of my breasts, the concern at this point for me is a new primary breast cancer. I do not know the odds for this but logic "says" that I would be at greater risk of breast cancer just because I have had breast cancer (even though I tested negative for the BRCA genes). Like you, if it ever happens again its tata to the tatas.

We are here for you at every turn.

[Hopeful]

I do not know the odds for this but logic "says" that I would be at greater risk of breast cancer just because I have had breast cancer

Have a look at this article: http://www.medicalnewstoday.com/releases/251612.php

The case is made for genomic instability preceeding the appearance of either DCIS or IDC. I think this is where your logic may come in. I do suspect that the "instabilities" may be periodic, rather than constant, based on epigenetics: http://www.news-medical.net/news/20120503/A-test-to-predict-breast-cancer-many-years-before-the-disease-is-diagnosed.aspx That would explain why cancer reappears after many years of ned.

Hopeful

[Jean]

JayKay,
Sorry to read your post...I think all of us early stagers who are NED are realistic that the situation can change on a dime for us.
The earlier cancer is detected and the earlier treatment begins, the better the chance. You have been diligent in your care for the past 12 yrs. As you already know the current treatments for early stage has changed the stats.

I understand how you feel to hear the "c" word...Dr. Slamon told me that and the little voice in my head kept saying..."did I hear that right?"

Thinking of you and sending you healing energy.
Jean

[newgg]

JayKay, from another "lurker" and your note has brought me out. Have been NED for 8 years. Stage 2b, triple pos.( er/pr/her2+++) with SNB finding a couple of pos. nodes. Did the bilat surgery, chemo, rads and Herceptin. Arimidex for 7 years. As many have already shared with you it is all doable and we are "TOB" so there !! Also found this site doing research and love the info and support from all these Warriors. What a wonderful group !! From my lurking days.....this group will never know how much support they have been and continue to be to us lurkers. Thanks all !!!

[bria]

Newgg, you're living my worst nightmare. I'm afraid the same will happen to me in the future if not sooner. I have CEA that is rising steadily and they can't seem to find a reason why. Best of luck to you. Prayers too.

[jaykay]

Bria - please don't don't think that! Everyone is different. Now I'm just angry and ready to get on with it.

I honestly was reluctant to come "out of the closet" because it wasn't good news but I needed the support of this truly exceptional group

Best wishes to you, too

Janis

[norkdo]

When I hear you "swear" lol at those drains, I am reminded that I was to post this tiny point here...or large one...perhaps I will start a thread on it for new gals.

Drains: (was trying to put the thumbs down symbol here)

I had a drainless mastectomy June 2011. My surgeon did not believe in drains since he found that, statistically, fewer post-surgery infections occur when a surgeon does not leave drains in at the time of surgery. Instead, I went to him in clinic several times post surgery and he pulled out the liquid with a needle each time (it didn't hurt at all.)

Last month, Sept 2012, I had a mastectomy on my other breast (a skin-sparing, silicone-inserting cosmetic mastectomy). Brand new surgeon. Drains this time. Three drains! (I had a simultaneous expander insertion on the site of last year's mastectomy).

Having had two mastectomies, a year apart, one drainless, one with drains, all I can say is OOOOOOOOOOOOOOOOOOOOOOOWWWWWWWWWWWWWWWWWWWWWWWW!!! !!

Ladies: if you are about to get a mastectomy, look high and low for a surgeon who will drain you by needle during office visits after mastectomy instead. Do not accept a surgeon who will leave drains in you. How, my friends, how have you all coped with drains?? Agonizing! Painful! Shrieking in the middle of the night, I was, each time I turned incorrectly, etc. Nights of lying there saying "OW!" over and over again.

Sheesh! You all made it sound like drains were a bit awkward but nobody mentioned the pain where the drains meet the skin!!!!!!

When you are recommended a surgeon, before you meet him, ask his receptionist over the phone whether or not he ever does drain-free mastectomies.

[norkdo]

omg, Nancy! I private messaged you with a thing on chicago. You're Detroit, not Chicago. So sry my geography or my chemo/rads brain is screwed up!
Love,
Nora

[suzan w]

JayKay, sorry to read your news. As an 'early stager' who did hear the "c" word from my oncologist...your post affirms the fears that are always in the back of my mind! Although I did opt for a bilateral mastectomy back in 2005...and my tumor markers have always been low...the worry never goes away. I worry because I DONT have breasts to mammo, or BSE...and I have had so many xrays and scans...
You will kick this setback in the butt, grrrrr!!!!!

[tricia keegan]

Its all been said, so will just send ((((hugs))))!

[sarah]

I've had a recurrence and I agree, it's a terrible shock but as the others have stated, there are so many treatments available and have been successful. Herceptin is easy - I did it for 6 years. You didn't mention radiation but I suppose you've had it, if not and this is in the same breast (or not), you will have it. I'm now 8 years out from my recurrence.
The shock will wear off and once you start on your treatment, you'll feel more in control and better.
hugs and love
sarah