Symptoms of Recurrent Breast Cancer

[SusanV]

Hello Everyone,

I had a visit with my onc yesterday, and an associate of his provided me with a 12 page document covering some information about breast cancer. The document is titled "A patient's guide Follow-Up Care for Breast Cancer ASCO Recommendations of the American Society of Clinical Oncology. On Page Five I will type for you all the entire page.....

Follow Up Care

Most recurrent breast cancer is suspected or found by women themselves, and the majority of recurrences are detected between scheduled medical visists. So once your treatment has ended, it is important to get appropriate follow-up care.

Certain symptoms may indicate that your breast cancer has recurred. You need to know what these symptoms are. If you experience any of these symptoms, it is important to see your doctor immediatley so that they can be evaluated and approproate follow-up care can begin. These symptoms include:

* Chronic bone pain or tenderness
* skin rashes, redness or swelling
* new lumps in your breasts or chest
* chest pain and any shortness of breath
* changes in your breasts
* persistent abdominal pain
* changes in weight, especially weight loss

When choosing the doctor to handle your follow up care, consider choosing the one with whom you feel most comfortable.

Continuity of Care

The majority of breast cancer recurrences happen within the first 5 years after primary therapy. Medical history taking and physical exams are the most common methods of discovering a recurrence. So, one of the most important things you can do is maintain continuity of care and on-going honest communication with your doctor. Your combined efforts will help in detecting a recurrence earlier.


ON page 9...... This and other ASCO consumer guides can be found under the People Living with Cancer section of ASCO OnLine at: www.asco.org (http://www.asco.org)

Love to ALL

[CherylS]

Thank you for posting this Susan. Isn't it strange, I have never seen anything like this before? Does anyone know what the persistent abdominal pain might represent?

[Becky]

Most likely, liver mets.


Becky

[Sherryg683]

How in the heck can you determine new lumps in your breast. The one I had my lumpectomy in is so dang lumpy from scar tissue, I wouldn't know a new lump from an old one. I guess that's why I'm glad I get scanned every 3 months, cause I don't know what's real or not real anymore concerning my body...:) --sherryg683

[jessica]

Believe me...you'll know a new lump if you feel it...Even if you're not sure what you're palpating, there something deep inside that tells you...

8 weeks after my R hepatectomy, I was still recovering from my surgery, not yet back on Herceptin, my menstrual cycle was just returning (after just finishing chemo,again, 3 mos earlier), and I felt something...in the exact same spot that I had felt the 1st "something" 3yrs 8mos prior.

It was totally unbelievable & I just kept saying "This just isn't f****ing possible", but really, I knew...I hoped against hope that it was just old scar tissue, or breast tenderness from PMS...Even though the lump felt like a cyst - small, smooth, soft-it felt like a Vitamin E capsule. Even on the ultrasound, it looked as I imagined -smooth, pliable - like a Vitamin E capsule...Even the onc was unsure...But as soon as I saw the mammo & as soon as the surgeon pierced my skin for the FNA, I knew I already knew.

I had had countless scans,CT and PET, MRI's - none ever showed any unusual findings in the breast tissue. The major oversight, MY major oversight, OUR - me & my doc's- MAJOR OVERSIGHT, was not doing mammos...We all figured
I was getting PET scans q3weeks, doing CA27.29's AND I was on Herceptin...Doing a Mammo just seemed like one test we could afford to by-pass...because, really, what were the chances?

So over this 4+yr journey of countless scans, infusions, surgeries, etc, I've learned that you really can trust your intuition. Some times it's a little scary to know you already have the answer & there are those times you hope you're wrong...
I really believe that living with this disease would be far more difficult if we didn't rely on our faith and intuition...

Prayers, Faith & Courage!!!

Jessica

ps-after that little scare, another excisional biopsy of the malignant 1cm lump, follow up scans (all clean!!)I have still have lots of high grade DCIS globally thru the breast. I'm looking at a mastectomy in my future, but we're just trying to give me the longest disease free/surgery free interval as possible...God willing, that DCIS will stay just that, IN SITU, for a longlonglonglong time!

[merryg]

I am 8+ months post simple mastectomy and negative sentinal node biopsy (2 cm tumor then was ER/PR neg, Her2 +++, clear margins .9cc around).
Last week, during ultrasound for residual edema, the examiner found two small spots in remaining breast tissue and biopsied them. Diagnosis: recurrence (fragments?), each about 1 cm and close together. Coincidentally, I had a bump under skin at the inner edge, which felt like a small fluid sac.
She said she saw local lymphedema, a plumbing problem. There was a red spot on the skin over this spot. Eventually the sac moved toward the surface and then seemed to spread a small amount of fluid under skin on chest, as little bumps. The red spot is denser. The bumps come and go or sometimes appear as spots of a rash. Wondering if this is from the plumbing problem, a symptom of the recurrence, or something different.
Both surgeon and medical doc noted, "no obvious skin changes," even seeing the red spot. Although the sonographer saw fluid on the ultrasound, the surgeon said there's no edema. Re-excision is day after tomorrow, then perhaps this will go away. Any recurrences out there sound like this?
merryg

[Sherryg683]

That was another question of mine about having mammograms done when you get CT/PET scans done so often. Some Oncologist say mammograms aren't necessary. I asked mine and he recommended me doing them every year. I go in to see my gyn in Ocotober. The thought of squishing my already sore healing boob in one of those machines is awful. I really don't think I can stand it. I remember how bad it hurt when they did the mammogram when I had a lump, I can only imagine. I guess that's when all my pain/nerve pills will come in handy. And you are right about knowing a lump when you feel it. I always had lumpy breasts but when I found the cancer lump, I knew it was different..sherryg683

[tousled1]

Jessica,

I couldn't agree with you more that you know your own body better than you think you do. I had had a lump removed - one from each breast - in the past. When I found "this" lump I know instictively that it was cancer and I was right. I had fibrocystic disease of the breasts so my breasts were lumpy all the time but could detect any new lump.

[jessica]

Sherry~
I think the reason that I didn't push for mammo's is b/c I was (& still am) getting PET's every 12 weeks and I thought certainly the PET would be comprehensive enough. We had been so focused on my liver & monitoring the lesions there,anticipating the resection & honestly, I really believed that after a successful lumpectomy, clean scans for 3+yrs, that the chances of something to popping up in my breast would be slim to none! BUT, it's important to remember that scans are less reliable detecting anything under .5cm.
I'm told that a mammo would have picked up the very pervasive & very obvious calcifications much earlier. In fact, it wasn't until I flew back to Atlanta (I was recuperating from my liver resec. in Hawaii @my parent's), immediately did a PET scan, did that darn thing light up! It was already 1cm by the time I had the excisional biopsy. Since then we've followed up w/Breast MRI's - which are another complete lesson in humility...lying on your belly, propped up on a pillow-thing, w/your breast hanging through the cut-outs...w/ear-plugs!I almost expected someone to come in & put an apple in my mouth, too!
Regardless, I'm very proud to say that thru this very complicated journey, I've made very few mis-steps...not doing mammo's & instead relying on PET's was definitely one of them...but inspite of it all, I'm here, with my own hair, my own liver (re-generated!), & what's left of my own breasts-for as long as I'm allowed to keep them.
And ofcourse, unflappable Faith and HOPE! There's always FAITH & HOPE!

[StephN]

Hi -
Was a while back that you posted about having to cut short your recouping at your parent's in Hawaii. I had wondered how you were, so am very happy to see that you are enjoying a "status quo" period.

Only thing I am wondering about is that if you have DCIS, you very well know that those tumors do not stay In Situ - they grow.

Are you still getting Herceptin?? Hopefully this is slowing things down, but once they reach a certain "critical mass" the cat is out of the bag, so to speak.
What about another targeted therapy since there is something to see on the breast MRI's. (I know how you feel with the apple in the mouth idea - that did not occur to me, I was too absorbed in the music coming thought the headphones!)

There is a thread on this page that you may have noticed about HER2's with In Situ. I have not posted, but I also had an In Situ near one of the margins of my lumpectomy. Very small.

[jessica]

Hi Steph~
Thanks for the "welcome back"...I've checked in on occasion, but haven't posted in a long while. I look for you & Lolly, specifically, but always sending prayers & positive vibes to all.
So yeah, that DCIS...especially high grade - as is the type in my breast- does have a high potential of snowballing into invasive disease. So we're just trying to be extra vigilant, with frequent MRI's & mammo's, to catch it at the earliest moment that things start to look funny. At that point, my only option is a L. mastectomy w/recon, probably prophylactic on the R. I consulted w/a bunch of folks back in March when this all happened, so we've already explored my options-it'll have to be recon. w/expanders - autologous recon. is not a viable option for me (Thanks to Pilates!! not enough belly/back/butt tissue).
Mainly, we're fighting fot the longest disease-free/surgery-free interval possible. That liver resection consumed almost 6 mos before I was really back to my normal schedule of physical activity, teaching classes, training clients, etc. I thought I'd have to have the mastectomy by the end of this year, but it just seems so soon. I'd just as well wait, so long as I can safely do so & not jeopardize my health.
As for other treatment options...we explored add'l chemo, but we are traveling such unchartered territory, there was no clear answer re:To Do or NOT To Do more chemo. In the meantime, I've just stayed on Herceptin & have had clean scans/MRI's for the past 6 mos. Thank GOD!However, it is something I've been meaning to re-visit.
Steph, I so respect your opinion & the wisdom you've gathered over the course of your journey, any thoughts? Any add'l advice from the Peanut Gallery (or "Propeller Heads" as I've seen it referenced) is also, more than welcome!

Thanks in advance~
Jml