Re: Bios of BC Survivors

pjarmer

Hi!
My name is Paula. I live in a small town in central Iowa and I am a library director in an even smaller town. I am 51 years old and was diagnosed with DCIS in the summer of 1995. Treatment was:
**Excisional biopsy
**Lumpectomy with removal of 9 lymph nodes, all negative
**6 weeks of radiation treatment.
**BC discovered in my 1st every mamgogram
**Only person in my family with BC

This spring I had a stereotopic biopsy for a 1.2cm nodule in right breast (left had DCIS)and a bone biopsy for a lesion in sacral wing area (my backside). Both negative, but I am now being watched closely again.
As for radiation, I experienced very rare side effects, so I would tell others not to worry. I seem to be the oddball around here. Side effects included skin damage and bumps that under the treated breast that fill with lymph node fluid. I have had them removed twice and they return.
Best wishes to everyone fighting this--
Paula

joanberwick

Found lump in right breast just prior to Thanksgiving, 2002 but waited to have diagnosed by doctor until beginning of February to give me time to get income disability insurance during open enrollment.
Mammogram 2/5/02 and ultrasound showed Birads 4. Mammotome biopsies of both 2/12/2002
Received diagnosis 2/14/2003 Rt was DCIS, micropapillary and comedo grade 3/3, er-/pr-
Left was benign with focal calcification
Mastectomy on 3/13/2004 of 8 cm DCIS with TRAM reconstruction. Sentinel node neg. July 23rd operation to adjust size and shape of new breast mound and wings on TRAM scar, and October nipple reconstruction. Tamoxifen started October, 2004. December 22nd, 2003 aerola tattooed.
Routine mammogram 12/29/2003
Left DCIS High Nuclear Grade Fibrocystic changes
January 7, 2004 stereotactic core biopsy followed by 2 stereotactic biopsies on Jan 9th. er+ 80% pr+ 80%
Lumpectomy 1/19/04 for dcis. Not 1 pathologist on the team that reviewed specimen saw any evidence of dcis. Repeat Mammogram showed no dcis after excisional biopsy (lumpectomy). Got 2nd opinion from another breast surgeon in another center. She recommended an ultrasound based on unusual pathology results showing no dcis. Back to original breast surgeon who said was okay because stereotatic core biopsies had gotten it all before lumpectomy was done. Sent to radiation oncologist who had x-rays reviewed by her team. Based on their review- clip placed in area of concern during biopsy was still there in breast after lumpectomy- sent back to original surgeon for a re-excision. 3/15/04 re-excision w close margins of 1mm so immediate re-excision w great margins. It WAS DCIS so I was fortunate that my oncologist questioned pathology and had radiologist review films before she would proceed with radiation. Radiation would have been worthless if all dcis wasn't gotten rid of beforehand.
35 rads with 5 of them boosts. Had 3 Cat scans in prep due to need for re-excisions. Needed sling for radiation to keep heart out of radiation field. Almost opted for mastectomy w latissimus dorsi reconstruction. Follow-up Mammogram a few weeks from today. Any further dcis or anything means another mastectomy in future. Hopefully not for years if at all!!! Taking quinine and clonidine for nightime leg cramps and night sweats.

StefS

Can't believe I haven't posted on here before now. Hum, where to begin?

1.6cm tumor IDC
21/21 nodes positive
er/pr & her2neu negative

My first sign something was wrong was my left arm was swollen. THis was May 03. Saw a doc and had tests while on vacation! Being 40, it was my first mammo. All clear. Came home, more tests. CT scan showed enlarged lymph nodes, and by this time I could feel them. Surgery to removed swollen nodes Aug 4, received news it was cancer Aug 13, 2003. Poorly differiented and pathologist couldn't tell for sure WHAT kind of cancer it was. Everyone felt it was breast, but couldn't find a lump. My surgeon didn't want to do a mast with only feeling 85% positive it was breast cancer and made be go get a second opinion.
After more tests at Sloan-Kettering, we finally found the tumor in the axillary tail of the breast. So had mast Oct 31 with tissue expander reconstruction.
Did TAC chemo. Finished Apr 2, 2004. Developed inflammation areas on my inflate-a-boob. Had surgery May 17 to remove the expander. Said my body was having an allergic type reaction to it.
Started radiation yesterday, will be having 30-35 treatments give or take. (don't know for sure yet, docs were still crunching the numbers.)

sallyw

My name is Sally and I'm almost 48 years old. I live in Bethesda, Maryland.

I had my regular mammogram scheduled for 7/03, right after getting back from vacation. Mind you, my ob/gyn and my regular doc had found this 'cyst' in my left breast several months before. Both docs thought it was a cyst. After the mammo and then ultrasound, I was told that it was probably cancer. That was a Thursday. That Monday I saw the surgeon for a biopsy. Between the mammo and the biopsy, I felt a lump under my arm. July 27, 2003 was the day I was told it was definitely breast cancer.

Lumpectomy soon after that. He did an axillary node dissection since I already had the swollen node. (I now know that there were some more suspicious spots on the mammo - it thought multiple nodes were involved.)

3.7 cm tumor IDC
1/15 nodes positive
ER+/PR+
Grade 3
Stage 2b
Her2neu +++

Got into see a great oncologist. She suggested that I try for a clinical trial for node positive her2neu positive women. I got into it and into the arm (of 3) that I wanted.

4 a/c 3 weeks apart
12 weekly taxols with herceptin
40 more weekly herceptins
35 rads

I've got 16 more herceptins to go! I just had my one year mammogram a few weeks ago and it was clean.

I'm planning on surviving for a looooooooong time!

Sally

sams_mom

I don't know when you can start calling yourself a survivor...but I know I am.

I had my first child in April, 2003 at the age of 38. I had a lot of trouble breastfeeding him and was always massaging my breasts to get more milk. That was when I found the lump. The OB/GYN took a wait and watch approach as it was highly likely it was a blocked milk duct.

I only breastfed Sam for about 10 weeks and then the milk dried up and the lump seemed to go away. But at that point I was religious about my BSE's and found it again in August. I finally made an appointment and was diagnosed in October, 2003 with IDC. I had a simple mastectomy, with SNB. They did not find cancer in any of the sentinal nodes but took additional nodes because there were some faint dye elsewhere. She took more nodes and one had a very teeny amount of cancer in it.

My husband and I had planned on having another child so we did a round of IVF in between surgery and chemo and froze some embroys.

I did chemo starting in January. A/C + Taxol dose dense. My last chemo was April 15, 2004...the best tax day ever!!!

It is not easy to deal with all of this, surgery, chemo etc...but you can do it!

My thanks to the outstanding strong women of breastcancer.org and the amazing Dr. Weiss and crew for this Web site...I really don't know how I would've gotten through it without all of the support.

As always, my best to you.

kswynn

Hi, I'm 46, I teach school, have two kids, one on the way to college and one in the 9th grade. I had breast cancer last year ,very large tumor in left breast. I had chemo(heavy doses) then mastetomy last June, then radiation. Now on tamoxifen. I am having terrible hot flashes and a little lyphydemia in my arm. I feel like I'm just waiting to hear the cancer is back. Is this fear normal?

pjarmer

Hi!
My name is Paula. I am 51, have two grown children and am a library director for a small Iowa community.

I had my baseline mamogram 9 years ago, where a calcification was found. No lump could be felt. I went for an excisional biopsy and right after surgery was told it was benign. Two days later I got a call from my surgeon who told me I had DCIS--it had been found deep in the tissue he removed. I had a re-excision done followed by 6 weeks of radiation.

Last spring, my mamo showed a lesion in the other breast. No lump could be felt, again. I was told to watch it and have another mamo next year to see if it had grown. No way was I waiting for another year with this thing hanging over my head! So I went back to my surgeon and told him I wanted a biopsy. Tried a biopsy guided by ultrasound--the lesion didn't show up. Then I had a stereotactic biopsy done. It turned out to be benign.

I started taking Tamoxifen in June because of this new scare. It was not offered to me when I had my original BC. I'm having a bit of a problem with the tamoxifen, but I plan to keep up with it.
Best wishes--

Elizabeth06

Hi Paula,

Thanks for sharing your story. I had an LCIS picked up on a mamm (an extremely rare occurrence) by a very observant tech many years ago. Radiologists later interpreted the lesion as benign. Tech encouraged me keep repeating mammos, radiologists said no problem lets watch and wait. My LCIS sadly led to ILC as everyone just waited and watched. Lobular is the sneaky one with often a thickening on presentation instead of a lump.

Fortunately my ILC had not spread to lymph node etc and I'm grateful my prognosis is good. It would have been better if the LCIS had been delt with when it was observed, nearly 13yrs before an invasive form was discovered.

I'm now taking Arimidex since my tumor was high on the Estrogen scale. Just want to give a word of warning for anyone receiving a LCIS/DCIS etc to get the real deal from their Drs. for future planning of their treatment program

pjacks

I read your bios about your surgeons communication. Have you started chemo yet? I would find a major meical center and ask about clinical trials...don't go for the standard regimen...go with someone who knows about the latest stuff available.

I would not think of it as doomed, i would simply say your case needs some careful decision making in terms of your treatment.

All my best.

Patty
Survivor

sandymuller

Anyone out here a Wilm's Tumor survivor, who then went on to have BC, and now bone mets?

Moderators

sandymuller, welcome to Breastcancer.org. You've posted on a thread that hasn't been active since 2004, but the Search feature here on the discussion boards does show that members have mentioned Wilm's Tumor in posts more recently. You might want to start a new thread with your question, or use the Search feature with Wilm as your keyword to identify other threads that discuss it.

Best wishes,

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