Date: Tue, 6 Jul 1999 01:53:52 -0500
From: Doris Dietert
Subject: Re: listserv -- In response to Janet Cowan
Hi Janet,
I think you have found the right list, it talks about all those things at
different times. Mostly, it talks about whatever someone in particular is
interested in at that time. Multiple threads go on & a lot of private posts
are sent to indiviuals who ask specific questions to try & keep the list
load down & because they often feel its important to only that person & not
the whole list. On the other hand, some post things that should go to
indivuals because they haven't figured out that is should have been private.
My point, we don't know what you need to know about unless you let us know. An introdution is nice but not necessary but it does tell us where you are at in this journey & gives us a clue what you're needing at the moment. You'll find lots will respond to specific questions. If they don't, its because they're busy & assumed someone else would catch it (the question). So a gentle "I asked ...haven't heard" will always prompt several to send immediate replys. I have a hard time keeping up with the list, so perhaps you have sent your story/question/specifics & I missed it. Sorry. But I'd be more than happy to "attempt" to answer (or direct you to someone who could) if you have specifics.
No matter where you're at, there are lots of listers at the same place & they are all eager to share news, learn new things & ask questions about what to expect. Some of the stories are for encouragement. Mine is mostly that. So I'll share it with you. I was 1st dx'd in 1971 at the age of 22 with a 3yr old daughter. So I can relate to young women & mothers who are inundated with the news. I had a Radical mastectomy cause that's what they did back then & in that era you signed "upfront" so you went into the biopsy not knowing & came out boobless if it was. I had no lymph node involvement so nothing else was done. I just had to live day to day not knowing if it would recur. And the markers kept moving on me. Two yrs, then 5, 8, 15, 20. So at 24 I no longer thought about it & WHAM another primary at 46 (in 1995). I didn't find this list til '97 so I still went thru most of it alone.
This time I had an MRM with no nodal involvement but did go thru chemo since this was the 2nd aggressive cancer I'd had. I had ACx4 (adryiamycin & Cytoxin 4 times) & developed lymphedema which progressively grew worse til they dx'd it 18months later & I had it treated. Usually this doesn't go away & you have to compression wrap nightly & wear compression sleeves during the day to get the swelling down & keep it down. After 10 months I no longer had problems with it...so far. So I don't have to do all that mess anymore...but boy that was more depressing that the BC itself. Many on the list have experienced this or have questions about it & stuff on lymphedema comes up all the time, especially about flying. Even though mine's gone, if I fly I wear the sleeve...don't want to trigger it back again at any cost. I never even knew about lymphedema before...just that some ladies got big arms but I hadn't so no big deal. I didn't know not to have IV's started, injections given, BP taken etc on the mastectomy side. I did all of that including allergy shots for yrs before a nurse at work giving me my shots clued me it.
I've watched it since then but figured since it'd already been 17yrs I really didn't have to worry. Found out later from my face to face support group that 2 ladies there didn't have their lymphedema flare up til 15-17 yrs later. So now I avoid everything possible but will allow a blood draw on that arm only. Make them do IV's in foot but have allowed it in left side only if for a very short time. I know my risks & make them my choices not the medical communities or for their convenience. I've gotten stronger in demanding my rights & not letting them intimidate me. I've always been a "whatever" & go with the flow person...I'm getting better(G).
I've had reconstruction done on both sides...after 10yrs the 1st time (with a lat flap...WOW) & had it redone with the newer tissue expander methods 10yrs later & still wasn't completely satisfied. Its hard to reconstruct a Radical where they removed the pectoral muscles. With the 2nd I waited 2 yrs before doing the reco & had it done with the tissue expander alone (with a saline implant)...flaps use muscle & that's just too painful for me. I'd needed it with the 1st but didn't with the 2nd so NO WAY. Others have chosen TRAMs which are flaps that involve your abdomen & those who choose them either love them or hate them & have lots to tell you about the pros & cons. To some, the pain was well worth it. Mine was for the lat flap & even though it wasn't as great as I wanted it, it helped me tremendously to feel more "ME". So I don't regret it & my last plastic surgeon (ps) reworked it too & did the nipple & now for the 1st time in 27 yrs, I match on both sides so can wear a bra or NOT as I choose.
Mostly I'm going braless cause I've HAD to wear them forever. I had 2 children after the 1st BC, a girl & a boy. Now, my oldest daughter is 31, married & has 2 adorable daughters 7 & 3. I went back to college & got a business degree in computers & accounting & started a career...programming for a local utility company about an hour's drive away. I worked on my masters for 6 yrs in the evenings. I put my children in karate & joined them. My middle daughter & I earned our black belts together & I started teaching my own school after work for several yrs before the 2nd cancer came up. I even learned to scuba dive & loved it...went to Hawaii with my mom & dove over there. Have dived off the Ca coast with my brother...that's way to hard for me. Life goes on after cancer. You can be NED (no evidence of disease) for a long time...even if it recurrs, there are so many treatments available you learn from the survivors on this list that you can have a great quality of life for a long time after recurring. You learn about all the different types of recurrences that can happen & the different approaches to treatments.
There is just so much hope available from this group & so much knowledge, on just about anything. Some have great faith & others are atheists & they all agree to disagree or at least be tolerant of each other. But also outspoken. Sometimes they'll get into a great discussion of breast forms for those who choose not to have reco. They even have a great birdseed receipe for making a comfortable, inexpensive one that is weighted & works. Then they discuss baldness & wigs...pro & cons. They clue you in to not being the only one having "feelings" about the things people say to you & your reactions to them. Its just nice to know that you're not alone in what ever you're going thru & validation of your feelings is important. We've been where your at & where you're headed & we have friends & family who haven't & don't/can't understand just HOW you feel.
We all have problems with hot flashes, taking Tamoxifen, wanting to know about nutrition & supplements that help (or that you've heard you shouldn't take or should take & are confused etc). Some people have researched the hot flash topic in all aspects & will repost their knowledge if asked. Cause they couldn't find much that helped but tried just about everything. Others have problems sleeping, getting pain relief, burning from rads etc & have amassed info on these topics. Sometimes you just need help to understand your path report...boy do we have experts here. There are several researchers around who answer very technical questions & a few docs who answer specific medical questions. The knowledge of this group is awesome. Musa Meyer has written 2 books about the BC experience, & one is about the advanced disease...how people cope & the medical procedures available. We have a neuclear tech named Toya who's a hoot but knows so much...if you have any question about any procedure she's right there. MRI, Muga, Cat scan. Really Janet, field us a topic of interest & see what you get back. Tell us you're about to have a procedure & SEE WHAT YOU RECEIVE then!!! And LOVE, there's always that!
I'd be happy to keep in touch if I can be of any help at all. I read the list, as hard as it is to keep up sometimes (G), so I could spot topics of interest & forward them to you...I do that for 2 friends (I met on the list) right now. Mostly you meet lots of interesting people who you can choose to correspond with individually or Not.
Just hoping that this 27yr, 2time BC survivor can be of some assistance or at least provide some hope. Sending Texas size HUGS to you. Ask anything in my experience & I'll be glad to provide my insights.
Doris Dietert in Texas