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Old 11-29-2009, 11:47 PM   #1
bejuce
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Breast Mass vs. Breast Engorgement

I've recently requested a copy of all my medical records in an effort to understand how/why it took so long to diagnose me.

In reading through them, I found out that my OB had noted that back in March '08 (I was diagnosed on February '09) my right breast was engorged from breastfeeding (more than the left) in the upper outer quadrant (I was only nursing my son for comfort at night at that point.)

Since I found my swollen lymph node in July '08, it sure looks like to me that my so-called breast engorgement was already my breast tumor in there. How likely is it to mistake a breast mass for breast engorgement? Has anyone heard/experienced this before? Shouldn't this "breast engorgement" finding combined with my swollen lymph node two months later immediately prompt the doctors to recommend me for a mammogram/MRI? Imagine what will happen now with the new guidelines in place...
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 11-30-2009, 05:53 AM   #2
Becky
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Re: Breast Mass vs. Breast Engorgement

Hi

I'll comment first on the new guidelines - you will and would still get diagnositics as the mammo or MRI would be ordered because you had a problem. I am sure that won't change just the age requirements etc for standard mammos.

Second, I think there is difficulty in diagnosing when a woman is still nursing and especially in that "semi-weaning" stage. Although not diagnosed while nursing, I did nurse and got the same exact engorgement problem you described - a whole quadrant which is typical. I was given antibiotics that cleared it right up.

I am not sure how quickly the doctors dealt with you after the swollen lymph node. That would have not just been bells and whistles to me but a gigantic blow horn!

Just to reiterate, I think someone who was in your situation - it would be easy for a doctor to confuse engorgement versus a mass.
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Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 11-30-2009, 09:24 AM   #3
suzan w
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Re: Breast Mass vs. Breast Engorgement

Hi, I agree with Becky, my understanding of the 'new guidelines' is mainly for "routine mammograms", ie: baseline for everyone at age 40, etc. I would think if someone had an unusual presentation at a doc visit, or a concern upon finding a lump that a mammogram would still be the first recommendation. I, too, nursed both of my boys and had some issues with breast engorgement, and areas that felt "funny" to me. It was a long time ago (34 years!!) but one time I did get a needle biopsy on the area which proved to be nothing. Good for you, getting your records, I think it is very important for us to have all of our "stuff" available at a moment's notice. xo Suzan
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 11-30-2009, 12:01 PM   #4
Ruth
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Re: Breast Mass vs. Breast Engorgement

Been there...lets see. I found mine while weaning my daughter from nursing. What finally caught the attention was my inability to get my engorgement down...after 9 MONTHS!
A little history. Almost immediately after my daughters birth my right breast had problems with engorgement. I was on antibiotics; bled from the nipple; went to hospital lactating specialists; and OBGYN. I didn't have these extreme problems nursing my older boys but the lactating specialist just told me to keep going. I remember trying heating compresses; cabbage leaves and manually compressing the breast to get the "engorgement" down. My nodes were engorged and that is also common with nursing. It didn't raise flags and no-one mentioned a mammogram since you can't get one while nursing. Plus I was in my 30's and no history of any cancer anywhere in my family.
Then I finally started weaning my daughter after months of frustrated nursing. I couldn't get "the lump" in my breast to go away. Went to my OBGYN and goodness probably had the cancer the whole time and it was in 10 of my lymphnodes. My Oncologist feels the nursing aggrevated the situation since my nodes were on super cleasing mode. It's hard to say why things happened the way they did. Who knows why these things happen. I don't regret nursing my sweet Emma and had to promise the boys that their baby sister wouldn't get cancer from the milk. At the time that was their greatest concern. The innocence of kids.
Don't forget to always have hope...this all happened to me over 6 years ago. Still here and sometimes wish I could nurse another little one.
Hugs ~ Ruth
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Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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