2011 Sisters

justmejanis

Merlinda that is great news.  You are almost there!  Hugs!

KittyGirl2011

Janis - I'll take that recipe too!  Sounds good for a cold MN night.  Merlinda - Awesone girl, kicking BC in the butt.  Day 3 today of mammosite rads went well.  Only 2 more days to go!  Kitty

justmejanis

I'll get it to you Kitty......it really is good.  I am thrilled you are almost done.  Soon we'll ne celebrating!

Anyone who wants the soup recipe....please feel free to remind me later.  I plead brain damage.  I will try to get it out before winter is over.  LOL.

jenn333

Hi everyone -

Thanks for the good thoughts on my biopsies.  Just got my results.  Found the same sort of cancer in 2 of the 3 areas they tested.  Looks like the DCIS/IDC has kind of branched through one of the ducts and popped out as IDC in a couple of additional spots.  Same low grade ER/PR positive as the other tumor.  So, mastectomy for me and not lumpectomy unfortunately.  Will be having immediate DIEP reconstruction.  Oh well.  It is what it is.  The good news is that it looks like there is no lymph node involvement still but of course we'll have to wait for path results to be 100% certain.  Looks like radiation and chemo are unlikely but will still have to take tamoxifen.

Just relieved to know what I'm dealing with so I can start the process to getting this over with.  Surgery likely within the next 2-4 weeks.

Janis - good news on rads - heard it's generally pretty well tolerated so hopefully it will continue to go smoothly for you.  Share that soup recipe with the rest of us too, would ya?  Should be getting near to soup time by the time I'm sitting around recuperating so that will be something comforting to look forward to.

Hugs to all.

justmejanis

Jenn....sorry to hear that you are facing the mastectomy.  I have heard so many good things about reconstruction and I am sure you will end up looking great.  Just take lots of deep breaths........I'll be thinking of you hon.  Sending soft healing hugs to you.

I have rads today, then see my Onc, then a couple hours later have to go see my primary care doc.  I'll be running all day it seems. 

Hugs and love to you special gals!

madpeacock

Janis - I would love to have the soup recipe as well, though with 90+ temps for the foreseeable future - no rush!

Jenn - Sorry you have been "upgraded" with your surgery, but you now have a plan in place and can move forward. My big news day is Monday, but I'm calling the surgeon again today to see if they have (finally) gotten my ER/PR and HER2 back yet.  

Back to my busy week, but just wanted to say hello! 

justmejanis

madpeacock.....It is hot here too, so not quite soup season.  Today I am making spaghetti sauce from scratch.  My garden is overflowing.  We have too many plants and every day when I go out there, the tomato plants look like Christmas trees.  Lots of red!  I keep picking and they keep coming!

My doctor appointment today was just routine.  I will also see him every week during radiation.  So far so good, except I made the mistake of putting on deodorant when I got home.  Yikes!  Today was day 3, so just 30 to go!

I hope everyone is having a good day.  Hugs...as always!

KittyGirl2011

Hi Everyone,  Just finished day 4 of HDR today with no problems.  Last day tomorrow!  I'm looking forward to getting rid of this catheter but a little squeamish about the pain.  I'm a whimp when it comes to pain .  Doctor told me today that it might sting for a little bit so told me to take the Vicodin before I come.  Had my US for the thyroid today so I'll be waiting AGAIN for the results.  UGH!  I hate the waiting!  Kitty

justmejanis

Kitty sorry about the waiting yet again.  It sucks, I know.  I will patiently wait with you, okay? 

I am only on day three of rads and already having some discomfort.  My breast is pretty pink and my underarm hurts.  I had to go see my regular doctor today and lots of waiting.  Then had to go get prescriptions filled and I was so uncomfortable I could have removed my bra right in the store.  LOL.

madpeacock

Wow - results in. I am a strongly triple positive - ER - 88%/PR - 81%  and HER2 @ 3+. However, my Ki67 - which measures cell proliferation - was low at 13%. BS said this was "unusual". Well, unusual is normal for me...More results, including MRI , on Monday.

@janis - we haven't had rain in days and days, so my tomatoes are looking quite pitiful. I'm trying to help them out, but they're about done for the season. I planted lots of heirloom tomatoes this year, but I am buying most of our supply at the farmer's market. Sigh... 

rjbaby69

Jenn:  So sorry about the upgrade.  Now you have a plan and know which direction you're headed.  I felt a sigh of relief when I finally had a plan and knew what direction I'm traveling.  Thinking of you.

 Kitty:  Hang in there.  Almost done.  Maybe your wait won't be a long one.

Merlinda:  Go girl!!!

Janis:  Sorry about your discomfort.  Hopefully you are at home taking it easy.

Hugs!

duckyb1

Granny.................are you out there..................want to make sure your ok, and taking cover from the storm.........................I am going to go to my daughters..........right up the highway still in Pa., but at least I won't be alone.....................

The shore house is probably going to get hammered, but i can't worry about that............it is what it is...................hope your gonna be safe.............let me know how you are , and where you are going.........hugs

justmejanis

Hi RJ......I am just experiencing some discomfort so far.  I can cope.  I sure like going braless though right now.  I have "old" saggy boobs, LOL.  I would not venture out in public brasless if you paid me!  So yes, hanging around home most of the time.  Not thrilled with my new sunburn.

madpeacock.....I always thing of the south as having tons of rain.  I know that is not always the case.  It really rains here so rarely I forget what it sounds like.  I just water my tomato plants a lot.  Apparently they appreciate it.  I have 9 plants and pick at least 20 fresh tomatoes every day.

I sure hope all of you on the east coast are safe with this storm.  Sending tons of happy thoughts!

TinaT

jenn333:  Sorry about the news.  Will you have unilateral or bilateral surgery?  I hope you are able to believe as I did for myself that it was a stroke of good luck that my cancers were found on the MRI in light of my "normal" mammograms (very dense breast tissue).  I had five suspicious areas on MRI that were biopsied.  Three were benign fibroadenomas, one was ILC, and one was DCIS.  All my doctors have commented that if I hadn't fought for the MRI it likely would have been at least 4-5 years before the cancers could have been palpated and would likely have never shown up by mammogram.  Sounds like you were also diagnosed early so that's something to be happy about.  Best of luck!

jenn333

Tina: That was my experience exactly.  Even knowing exactly where the first tumor was (seen on ultrasound) they STILL couldn't see it on mammogram when they went back to take a look.  I'm telling anyone who will listen that if you have dense breast tissue, push for an ultrasound!  I only went in to see my doctor in the first place because I noticed an indentation on the inner bottom of my right breast.  I thought it was due to an ill fitting underwire.  Turns out it was - there was nothing associated with that indentation but guess what they saw when they took a look via ultrasound!  The tech said to me that someone "up there" was looking out for me.  I'd say she was right!

 I think it will be unilateral.  Nothing at all suspicious in the left although we have 4 benign things in there.  I figure they will keep a very close eye on me from now on and if anything starts to develop we'll see it early enough on MRI that I'll be able to have a lumpectomy.

Hugs to all.  Keeping you all in my thoughts.

TinaT

jenn333:  I was pretty floored by my diagnosis as I had no family history, felt no lumps or anything irregular, and nothing was seen on mammogram.  I was just so tired of getting the annual "no masses seen, but lesions could be obscured by dense breast tissue" that I decided last year I wanted a baseline/screening MRI.  It took 6 months of fighting with my insurance company, but finally a breast surgeon who did a biopsy on me in 2009 got it approved.  So it was quite a surprise when five areas showed up.  Only three could be seen on ultrasound to be biopsied.  The last two biopsies had to be done with MRI guidance.  So, for me, MRI showed things that even the US didn't.  This was all in the left breast, but I chose BXM once I discovered that lobular tends to be multifocal.

By the way, I had my exchange surgery two days ago (silicone implants for tissue expanders).  I'm getting ready to take and post some photos on the picture forum.  It's been quite a year, but one more hurdle out of the way. 

I wish you all the best!!! 

KittyGirl2011

WOW, I'm all done with rads!  Yeah!!!!!!  The removal of the catheter went real smooth.  I was so surprised!  They even gave me the catheter to take home as a souvenir!  I think I'll fill it up again (60ml) and use it for my next water balloon fight!  Thanks so much for your support and easing my fear.  Have a drink on me!  Kitty 

TinaT

robo47:  I have checked out that site.  I believe there is legsilation pending in numerous states to help bring awareness to this issue as well as making proper diagnostic tools easier for "dense" women to access.  I actually changed primary physicians last year because mine wasn't interested in helping me to pursue this.  My new internist and my gynecologist both tried jumping through hoops for the insurance company, but couldn't get MRI authorization.  I had decided that if I couldn't get it authorized by the end of last year I would pay out of pocket to have it done.  The breast surgeon gave it one last shot (as I said there was no specific reason to do it other than dense tissue) and it finally was OK'd.  She did it to ease my mind and she was as startled as me when two different cancers were found.  She kept saying, "Good for you!  You listened to that little voice!"  OK, off my MRI soapbox now! 

justmejanis

I was without medical insurance for the last ten years.  My DH and I both worked, but lived in Wyoming, worked for small companies that never provided insurance.  Because of a few prior medical issues, insurance for me was completely outrageous and not doable.  So I "winged" it for those years, paying out of pocket for everything medical.  Over the years this included a broken ankle, two MRI's, to the tune of many thousands of dollars.  It took a few years, but we paid every dime.

When my DH's health forced us to leave Wyoming (emphysema, COPD, elevation too high) we moved to Idaho and assumed we could fine work.  It was horrible, still is.  There are very few jobs here and we have tried and tried.  DH finally filed for SS and we now live on a very tiny monthly income.  Our savings are totally wiped out.  I ended up going to a sliding fee medical facility here.  My primary care doctor who began my care was stunned I had not had a mammogram in 15 years.  There is no BC in my family, and with so many other financial obligations I simply did not get routine preventative care.

So we all know how that story ended.  I am deeply, deeply grateful to the Susan G. Koman Foundation for the amazing help they have provided me.  Also to the clinic who enrolled me in the Women's Health Care Program that got this ball rolling in the first place.  Without my consent, my sneaky Nurse Navigator has gotten me two gas cards through Susan G. Koman to help me get to radiation and appointments.  I am stunned and so humbled.  This truly is a charity that gives back to the people who really need it. 

I think BC has come so far in so many years.  There are still clearly huge problems with insurance companies in terms of providing proper diagnostic tools.  I too have dense breasts and never felt my tumor, despite it being 3.2cm.  I am not sure what kind of follow up I will receive after radiation.  I am sure however my onc will provide excellent after care.  My tumor was seen on mammogram, and an ultrasound pretty much confirned it.

Okay my rant over now.....Kitty, let's party girl!  Your drinks are too pretty!

LovesChristmas-Barb

Congratulations KittyGirl!!! Happy dance time!!

justmejanis

Good morning everyone.  I hpe you are all okay, and those in the east can stay safe and dry.  Thinking of you all.  Have a cup 'o coffee on me!

KRomanoFight

Jenn, good luck with the mastectomy.

Janis: I heard on another link that some ladies were using Calendula cream and aloe straight from the plants for radiation sites.  What a touching story Janis....hang in there, your time will come!

Just passing some time tonight while we wait out Irene overnight....and then I'll be out of power!

justmejanis

Thank you KRomanoFight!  Things are tough, but I am tougher you know?

Oh wow, another one in the path of Irene.  I hope you are safe and come through with no damage.  Irene really is a nasty girl.  Please take the best of care!  Losing power is probably inevitable.  I'm sorry! 

jenn333

Robo47: Thanks for the link to areyoudense.org.  I am telling everyone who will listen not to rely on mammos if they're dense.  Utterly shocking to me that not once in 7 years of mammos did ONE doctor or radiologist tell me I was dense, let alone the limitations of mammography!  When I have the luxury to get angry about this, I will.  For now, I'm focusing all of my energy on just getting through this.

KittyGirl2011 - Congrats on finishing rads.  That must be such a relief.

Janice - So awful to hear your insurance woes.  Thank heavens for Komen.  As if we don't have enough to deal with.  Money should not be what stands between us and a good outcome.

Speaking of insurance woes, I'm heading to UCLA for treatment rather than Hoag (which is 10 minutes from my house - I could cry).  Found out last week that the one and only surgical team specializing in DIEP reconstruction in Orange County is not contracted with any insurance companies.  Our potential out of pocket cost, even assuming we could get the insurance company to the table, was going to be $20K.  So, tomorrow I'm meeting with Dr. Helena Chang, Director of the Revlon/UCLA Breast Center and also one of the superb plastic surgeons they have there.  Sure sucks having to drive all the way to LA (if you know LA you'll know what traffic REALLY is) but at least I couldn't be in better hands.  Hopefully now I can get this show on the road already.

Hope everyone is doing well this week!

TinaT

jenn333:  I hear you...I've got two issues that are simmering, but I have to concentrate on healing right now.  Both the dense breast issue and the fact that women aren't being informed of nipple-sparing surgery have me thinking hard about how I can help to make some changes. 

Take care!!!

KRomanoFight

I'm back.....power was out until Mon night around 10:30.  Not too bad, didn't get damage.  At least my roof didn't blow off!

Anyway, saw the surgeon today for the first time since the lumpectomy/SNB.  So I'm ER+/PR- and HER2+.  So radiation for sure, but would have to be entered into a study for the Mammosite since I'm under 50 yo.  As for the HER2, not exactly what I wanted to hear since that means chemo, UGH!  He also said Herceptin.  Not sure if they will do Tamoxifen, but he did mention it.  Why I say that is he said we could start family planning in 2 years if we wanted another child.  I thought Tamoxifen was 5 years. 

So anyone on Herceptin or chemo?  Just wondering how bad, how long....what's the deal?  Also, pray that I'm part of the half of the study who gets the mammosite.  I would just rather that then traditional radiation......

Thanks ladies!  Hugs to all.

rjbaby69

Hey everyone.  Hope you are doing well today.

Had port placed today.  Everything went well.  Been home since about lunch just trying to take it easy.  Slept most of the afternoon because they gave me 2 hyrdos before I left the hospital.  Getting ready to begin the dreaded chemo on the 8th.  Will go to the city early that day so I can look for a wig.  Found a couple in the little booklet the nurse navigator sent me, but I would really like to find one I like in a store so I can look at it.  If I order this one, I may not like it when I get it! 

Can't drive my bus until Friday.  Dang!  I don't like that a bit.  But they don't want me to exert to much movement right now because they are afraid it will dislodge my port.  I understand, but I really need to be on the job, you know?  But at least they said I can go to the office tomorrow.  I don't work at the convenience store again until Saturday, so that's good.  No lifting, reaching etc. for quite a while. 

KRomano I will have to do the regular radiation.  Not looking forward to driving into the city for 6 weeks 5 times a week.  It's 35 miles from where I live to the treatment site.  So that's about a 70 mile round trip every day.  I am going to ask if I can get the radiation in a closer city.  All they can do is say no, right?  We have a medical facility that's about 24 miles from me.  That would be so much easier.

I'm also supposed to have the neuplasta(?) shot the day after my chemo.  Do you think they would send the meds to my PCP here in town and let him give them to me?  I really hate to travel (and miss work) 2 days in a row.  No harm in asking, which I will.

That's about all for my update.  Physicall I'm feeling pretty good, emotionally I'm spent.  I am ready to go ahead with treatments and get this over with.

Hope you all have a good day tomorrow!

HUGS!

Kymn

Seeing a light at the end of the tunnel girls, had number 20 of rads today only 13 more to go. Other than fatigue and a little blistering im feeling pretty good.

have a great long weekend all

justmejanis

Kymm...thrilled you are so much closer to the end of that tunnel.  I had number 8 today, so thinking that is 1/4 of the way through.  Every day I get closer.  I have no blistering yet, but breast does get a little pinker every day.  Nothing I can't deal with, not painful at all.  Just sensitive.

Hope everyone is doing well.  I am headed to the airport soon, good frined coming to visit for five days.  I am so excited.  I have seen her in 14 months since we moved from Wyoming.  This will be a great diversion!

If I vanish for awhile, remember I will think of all of you every day!  Big hugs all the way around!

KRomanoFight

RJ, that stinks.  I'm sure they should be able to find somewhere closer to you to get treatments.  Especially since there will be so many.  That's a lot of travel both in time and energy.  I'm not that far from where my docs are and it's about 20 min away.  Tomorrow I'm meeting with RO to find out what I'll be getting.  I'm just nervous about the chemo and the herceptin.  Luckily I work in a hospital so I talked to the pharmacist today to try and get some info.

I understand what you mean about work.  I'm all for taking off when you don't feel well and taking care of you.  But work is a wonderful distraction from what is going on.  Even though I feel like I can get nothing done at work because this is all I'm thinking of, it's still better then sitting home.

Kymn, great news....keep plugging along, you can do it!

Janis...have fun visiting with your friend.  Good luck with the radiation.