If you have just been diagnosed....

michele37 · November 2009

Hi bf2009,

One of the nurses at the office where I had my radiation last month was triple negative and had two very large tumors. The cancer was in her nodes and she had to have them removed. She also had to have both breasts removed. That was eight years ago. She looks and feels great and is cancer free today.

bf2009 · November 2009

Michele37

that is nice to hear !

If my tumor RESPONDS to the chemo and shrinks ( will only have to have a lumpectomy,

not mastectomy)

and also there is no node involvement, from all I read I could live quite a few more years ! that is the most hope I can have right now, for those 2 factors to come to light ( shrinking tumor with chemo and no node involement)

I just read and read and read.. I think its my way to cope... because I want specific information and thanks to the internet... I can get it.

What did people do before they had the internet?

I am also in deep question, trying to figure out why I have triple negative and am caucasion.. also not so young as I'm 50 and not poor. ???????? ( not rich either, but not poor)

Says poor socioeconomic factors and I'm seriously considering if I really have taken that bad care of myself over the years??? I do believe I have had higher stress than most people in my life, but that alone cannot be why as we all have high stress these days.

NOTE to others who may have triple negative..........I did find that Vitamin D3 helps beat this !!!!

it is in egg yolks, beef liver, mackrel, cod liver oil, milk fortified with Vit D3 ( I checked and the brand I have at home is !!!)..... and sunshine... more so morning sunshine, for 20 minutes a day to 60% of your body

I am going to be sure I get some sunshine everyday even if I have to lay in front of my sliding glass door (since its winter)... all easy, cheap things to do.

Also a high fiber, low fat diet is helpful.

I dont want to die... I am willing to change my bad habits... quitting smoking is going to be hardest thing to do... but I guess cigarettes and smoking are not worth it, more so at this point where I'm facing this.

I love xanax Doesn't make me sleepy, just calm and when calm I'm able to focus better, thus finding all this stuff online to answer my questions. When it wears off I go back to scary racing thoughts and trembling uncontrollably. SO>>>>>>>>>Thank God for xanax !

leisaparis · November 2009

Hello everyone, Am still kind of new at this myself. I have posted a couple of times. Never got any responses. I have been going through all the same feelings as the rest of you. I got my confirmation of IDC/Inflamitory, fast growing October 7th, 2009. Had a wirl wind of tests and emotions for 2 weeks straight. Had to have chemo first to shrink the mass ( not a lump ). 12 weeks. Will be having week # 6, Nov.20th. Then surgery ( mastectomy, right side ? ). Will know if it is just the right after chemo. They also found a spot on my lung which they will check out again, after chemo. Am on texotere & herceptin. Doing good so far ( knock on wood ) have had some side effects, but nothing I haven't been able to live with. So sorry we are all here, but glad to know that I have someone to talk to. My husband has been very supportive ( married 22 years, November 14, 2009 ). However there are some things he just does not understand. He tries, bless his heart. Love him to death. Thanks for letting me vent.

dlb823 · November 2009

Hi, leisaparis ~ Sorry you didn't get responses to your earlier posts. That happens sometimes, especially when newly diagnosed women ask questions on threads mostly frequented by other newly diagnosed women. Everyone's looking for info, but few women beyond the new stage come back to read and share their experience. So don't take it personally!

I just looked at your previous posts, and it looks like you have IBC? Is that right? If so, and if you haven't found it yet, there's a whole section here (look under FORUM INDEX above) for that. I'm sure if you introduce yourself on one of those threads you'll be very welcomed.

Glad you're doing well with chemo, and that you have a supportive husband. You know there's a great book called The Breast Cancer Husband -- written by a guy (Marc Silver) for guys, explaining breast cancer using a lot of sports terminology. I first heard about it from a psychologist, and many women here have said it helped their husbands better understand what we're going through.

Well, just wanted to welcome you and tell you that I hope you will get a lot of support here! Are you in a chemo group here? There are groups by the month for women starting chemo that month. If you haven't already, check out October or November 2009's and join in! Deanna

Luckycharm · November 2009

I already knew but was just told by my doctor yesterday that I have bc. I have an appointment with her late today but I do know it is grade 1 and 2 cm.

My main concern right now is how to tell my grown daughter and son. They have had a lot of drama in their lives already this year and I just don't know what to do. My 19 year old granddaughter will totally fall apart and I need to know how to help her with this.

I am really more worried about my children then myself even though they are grown.

Any advise please.

leisaparis · November 2009

dlb823, Thank you for your response.

Yes, When the doctor first told me, he said, You have IBC, but when I got my report it said IDC/Inflamitory. I guess it's the same thing.I have actually read most of the posts under IBC forum. I'm not in a chemo group and not sure where to find it. If you could tell me I would appreciate it.

I don't usually talk to much at home about things. I'm one of those people who just deal with it without a fuss and go on. I am also one of those people who likes to have everything in order,JUST in case. My husband doesn't like when I talk like that but I like to be prepared. Not that I think this thing is going to kill me, but because anytime you have surgery, you never know what will happen. I know of people who have gone under and never came out. I just like all my ducks in a row.

I very well plan on being able to see all my grand-kids grow. I'm 44 and have 9 and one on the way. My son has not even started yet. So I have no intention of going anywhere. Still working full time ( have to, my husband lost his job @ a week after I found out about the cancer) keeps me from just sitting at home on my butt and doing nothing. Plus I'm the one with the Insurance.

Well enough of that, Thanks for letting me vent.

eliz46 · November 2009

Hi everyone if anybody needs a support person im here ....i would be glad to help i have reciently went through a masectomy,chemotherpy and now on tomox... i might be of help ....

bf2009 · November 2009

I am having unexpected MAJOR problems with my marriage now...

as my husband wants his kids to still come over...

and a cold can kill me.

so sad

dlb823 · November 2009

Luckycharm ~ I'm so sorry that you, too, are joining us here. How did your doctor appointment go? Is she referring you to a breast surgeon?

As far as telling your grown daughter and son-in-law, I think that depends a lot on your daughter's personality and your relationship with her. Many of us found it easier not to tell too many people until we at least knew exactly what we were dealing with, and sometimes not until we had a surgery date scheduled. That way, she won't worry any more than necessary, because you can give her more concrete information -- for example, "They think they've caught it very early," -- rather than having her possibly panic and think its far more dire. When it comes to your 19-year old granddaughter, there is an excellent current thread here discussing teenagers and their reactions to our breast cancer. Look under "Active Topics" and scroll down until you see one that says something about "Dealing with your teenagers..."

Hope this helps some. Of course, if you and your daughter are extremely close, it might be difficult to keep it from her for even a few days, but please let us know how it goes and how you're doing. Deanna

Just-Sher · November 2009

Well, here I am! On a journey that I never thought that I would be taking. I was diagnosed with DCIS right breast on October 28, 09. So I am in the middle of the wait period, wait for the results, wait for the surgeon to call, wait, wait wait. I am beginning to think that the WAITING is worse than the cancer itself! This started with a basic mammo, followed by a compression mammo, followed by a stereotactic biopsy, meeting with the surgeon, followed by a nuclear medicine breast imagining. Surgeon is not sure that she can "get" all of the cancer crap with a lump so now looking at a mast. Seriously considering having both removed as I don't want to star in this show again! Sorry I am feeling a little "cranky" right now. Since the DX my insomnia has started again. Don't do well without sleep. Thought that I would try writing and then take a nap at 7:30 in the morning!! AAArrggghh. Need to be awake by 9:00 in case the surgeon calls today. So Ladies, my question to you, how do you sleep through this. I know that I will be a must more positive person and more able to deal with the cancer and kick it, if I just could get a solid nights sleep?

Thanks -

Just-Sher

dlb823 · November 2009

Just-Sher ~ You're right about the waiting! It is one of the roughest parts about this journey. As far as not sleeping, in addition to Ann's suggestion, some women get an RX for Ativan. Or, you can go to a health food store or natural market, as I did, and try a natural sleep compound or straight Melatonin, which is also good for us. In a pinch, I've also used a couple acetaminophen for pain -- not that I had pain, but they knock me out.

bf ~ Are you talking about catching a cold while you're on chemo? You're right, that can be absolutely horrible. It happened to me, and it took weeks to shake it. On the other hand, plenty of women going through chemo have children, so you just have to be careful. I got one of those big spray cans of air disinfectant and, in addition to wiping off counters and things people touched (especially in the kitchen), I also frequently sprayed the air.

But I think the larger issue has to do with putting you and your needs first right now, and that's something you need to have a heart-to-heart with your DH about. As wives and mothers we're usually the caregivers, and sometimes it takes a family meeting to explain that right now, at least for a little while, you won't be doing it all, and you are going to need some help and care from them while you focus on fighting bc. Otherwise, it is too overwhelming and you will not be a happy camper trying to do it all. Deanna

Luckycharm · November 2009

Thank you for the advise. I now know that I have Papillary invasive ductal cancer. Grade 1 stage 2 and harmon positive. Because of where it is located I have chosen to have the whole breast removed. I am very comfortable with this. Now I have to yet wait again for the her2 results which I don't understand and then wait again for an MRI result which I will have on Monday. So how do I deal with the delays? Even then after these results I have to have a bunch of lab work done ten days before surgery. Another delay. To me the delays is worst then the knowing it is bc.

Just-Sher · November 2009

Hi Lucky Charm,

Sounds like you are going through the waiting game too! I truly believe that the wait is worse than any of it. Although, after I finally have surgery I may change my thoughts on that. During the day, I have been cleaning and sorting my house, trying to get it in order, so that it doesn't bug me once I am finally home recuperating. Of course, I don't have ANY dates of when any of this will occur. Just waiting for the surgeon to call, just waiting for the next appointment... just waiting...

hang in there and know that you're not waiting alone!

Just-Sher

leisaparis · November 2009

Hi bf, I'm doing chemo right now and ended up with strept throat ( must of caught it from work ). I was able to take anti-biotics while still on chemo. Took care of it. Still have a cold though. Taking benadryl for it. Not fun, but survivable. Here's to hoping you DON'T catch anything. Good luck.

kittycat · November 2009

bf- good luck with everything. Getting diagnosed is always the worst part. I went through it with my sister (stage 2, grade 3) last October and then myself in June. Don't be worried about have a mastectomy. It's a pain, but not that bad, really. I had it on both sides - so did my sister. I was lucky not to go through chemo, but my sister went through it. She also had a fast growing tumor, but had no lymphnode involvement. (((hugs)))

Marlene1969 · November 2009

I (40)was diagnosed with DCIS, stage 0, Sept 8, Double mast with immediate tissue expanders 10/7. No further treatment besides reconstruction process. My mother is a bc survivor, as is my aunt, who tested positive for BRCA & will have a dbl mast in Dec. My sister is also positive for BRCA, developed IDC grade 3 & will have dbl mast & ovary removal asap.

Painful (made me immobile)for less than a couple of weeks..., back to the norm MUCH earlier than expected. I play upright bass AND have 3 little ones still at home (single mama), so I'm very glad, and surprised, to be doing dandilly.

Yes...I had a hard time sleeping while waiting,...all kinds of stuff goes through your brain, but the bottom line is.... you are taking action, you will find out what the scoop is SOON, and you will just do whatever you need to do. This is temporary, and countless women have done it, come through it, and are smiling & productive & sexy.

543uno · November 2009

I too, just received a diagnosis of "infultrating ductal cancer" after having a mamo, ultrasound and biopsy. I have not seen a surgeon yet to find out exactly what "infultrating" means! But, I am definitely on a rollercoaster of emotions right now! Hopefully, somebody out there may know what the above might mean.

dlb823 · November 2009

543uno ~ The word Infiltrating is used interchangeably with "invasive," and means the same thing -- basically that the cells have changed quite a bit from normal cells and have the capability of moving to other areas of our bodies. That does not mean that they have, but it distinguishes them from ductal carcinoma in situ (DCIS), the earliest form of breast cancer that does not move from where it starts.

This website has a great information section. Click on Symptoms & Diagnosis (far top bar), to get to it, and you'll see that you can search for terminology explanations, etc.

I'm so sorry that you're joining us, but you've come to a wonderful site for information and support. Let us know how else we can help you. Deanna

Kellysportsfan · November 2009

Hi my name is Kelly. I was just diagnosed with Stage1/Grade1 tubular cancer. I have to decide what kind of surgery I want. Do I do a lump with radation, masc, or bilateral. I have a strong family history. My sister in April of this year was diagnosed with Stage IV and then Oct. 28th I was diagnosed. My Aunt on my dad's side also had breast cancer. I tested negative for the gene. Everyone was shocked. No one more than me. Can my family really have this bad of luck? Anyway I'm doing the meetings with the doctors and then have to make a decision by the week after Thanksgiving. Gee talk about a hard decision. If any of you were given the choice of what surgery to have I would love to hear about how you got there.

Kellysportsfan · November 2009

I could use someone to talk to.

seizetheday · November 2009

Kelly, all of this is SUCH an individual choice but inform yourself so you know what YOUR choice is. This was my thought process. I was 44, stage 1 and had the option of lumpectomy. I was small chested so I felt the results would probably not be good and I did not want dents. I live in Florida where swim suits are the norm. I have 2 aunts (one not blood relative) who had unilateral mastectomies and regretted it. They said the worry and emotions of getting the mammograms consume them at times. I was in la la land about being of risk, esp. at 44 (aunt not considered risk in most guidelines). I had mammogram at 40 and was getting ready to schedule my next when I found my lump. I am NOT good at making appointments and knew I'd have a hard time keeping the every 6 month mammogram for the other side. I also wanted to avoid the radiation since my cancer was on my left near my heart. I did not want to go through this (mastectomy) ever again (get it on the other side) and after actually going through it I am glad I thought about that. One aunt had reconstruction but has had to have revisions as she has aged because they don't match well. I wanted a matching pair as I had nice breast to start out and did not want to be reminded of this every time I looked in the mirror. I had a great plastic surgeon (bi-lateral w/tissue expanders) and my results are fantastic. No, this is not like a "boob job", not that perfect (you lose nipples and natural projection), but results can be VERY good. I have absolutely NO regrets and am so happy I made the decision I did. But again, this is an individual decision.

bf2009 · November 2009

These tests are killing me.

Everyday since my diagnosis my tumor was cancer has been non stop with some pretty unpleasent stuff. Yesterday by far the worst ( even worse than lymph node biopsy and mediport placement day surgery) in all kinds of BIG SCARY machines ! Not to mention some radioactive

injection for the bone scan. It was the container it was in, I guess lead to protect others from it. and then that tube tunnel where you can't move for an hour, while on your stomach and a very uncomfortable table where it compresses your diaphram, very loud noises, very scary.

All my tests are not in yet but I do know some, that one test did coem back and they did not find cancer in the abdomen, pelvis or in the chest, so thats good but lots more tests coming in. Strange how your life can change in just a few weeks.

I'm thinking the chemo thats due to start next week will be no fun either, but at least things are starting to slow down with the testing as for a week and a half it was so overwelming that I thought I was losing my mind !

Triple negative invasive BC here... without mets to abd, chest or pelvis and thats all I know so far.

JUST WONDERING? does anyone elses breast hurt?

I'm thinking the pain is from the growth of the tumor...My one breast where the tumor is, is visibly larger than the other... and it hurts. Maybe this is from the stretching? but the actual tumor hurts to touch too... don't know if this is normal as I read breast cancer doesn't hurt.

Also where they tok the lymph node biopsy, Seem to have nerve damage in the back of my arm from shoulder to elbow. It feels asleep and have no real feeling in that area. Is that normal? and does the feeling return?

bf2009 · November 2009

In the lkast 2 days have had some good things happen !!!

First of all NO LYMPH NODE METS !

NO METS TO LIVER/ PELVIS/ ABD !!

and one of my husbands co-workers, a man... his wife had triple negative BC 4 years ago and this is great as he is being a good and postive role model for my husband as to what his role is in all this. For one... husband came home yesterday and told me and said that "WE" will have to change our diet !!! ( something I have been complaining about for years, the fact my husband wants too much and eats too much junk and fast food )

The guy told him about some books that helped them and what to expect me to go through in chemo. I feel this is a godsend as its really different when a man tells a man and this man has been through it with his wife. This is all good !!!

Also found a support group in my area through the american cancer society of WOMEN, lots with triple negative, lots of them many years out... !!! who can help me with my fears as well as give insight into books to help make lifestyle changes, give hope, even help with info on what to expect and so much more. They meet once a month and I'm really looking forword to meeting them !

Finally after weeks of fright, terror, tears, tests, some good news !!! NO METS and support for both me and husband !!! woohoo !

I have to get some xrays on friday as they are concerned with one bone, but chemo is set to begin dec 1st as scheduled.

The 2 best words in the world right now are NO METS !!!! as I've been getting pains and aches everywhere thinking they would find me full of cancer, but luckily... I'm good to go for the time being !

dlb823 · November 2009

That's great news, bf! And I think you and your DH will find angels like the man he works with all along this journey.

If you haven't already, you may want to join the December 2009 chemo group here.

Now try to relax and enjoy Thanksgiving with what sounds like an incredibly supportive DH!

Deanna

BrendaSharon · November 2009

bf2009,

Just stopped over to say hi!~~~~~

There is a support group for December 2009, your leader CoolBreeze has been on board for a while and I'm sure she will welcome you with open arms and will be full of advice. It is very helpful to be able to have support of women going through the same thing. We understand one another. I know I needed this site just to talk, cry if I need, vent, sometimes share a laugh or two. My biggest problem at the beginning of all the "Nightmare on Chemo Street" was everyone always saying "You will be OK, It's alright!!" Well not SO. I was scared to death, hated pain, surely a Whimp more than a "Warrior" which I have now become. BUT, unless you deal with what we deal with they just don't understand/ Even my DH, as wonderful as he is,m AND HE HAS BEEN GREAT, BUT, still he doesn't quite get it!! I'm sorry you have to be here at all, but you will find comfort amongst the ladies on board. To find December "The Amazon Women" go to top of page (Forum Index) Select (Chemo, before,during and After) select (December 2009 Chemo)

GREAT NEWS about NO METS!!!!!!!

Try to enjoy your Thanksgiving!!~~~~

(((((GENTLE HUGS))))) Brenda

mbarnes · November 2009

Article on -Breast Cancer a vitamin D deficiency disease.

Here is a link to a new articel on the connection between vitamin D deficiency and breast cancer,'Breast cancer-a vitamin d deficiency disease'

http://archive.constantcontact.com/fs026/1102452079631/archive/1102833653458.html

If the link does not work you can find the articel at www.vitaminD3world.com in the 'in the news' section.You can sign up for future newsletters via the link at the bottom of the newsletter

sullykm · December 2009

Hi.I was diagnosed with ER/PR+ BC on October 1, 09. The biopsy showed stage 1, however I know that only the pathology post surgery will tell me the whole story. Obviously all of you know of the anguish that this diagnosis causes. I have to say that all of the waiting around and waiting for the phone to ring has been truly awful.

I am only 42 and have tested negative for BRCA1/2 mutations, which has been a relief. I have a 9 yr old daughter. At least I know that it's probably only my body doing stupid things and hopefully won't affect her later in life. I have very dense breasts with about a zillion calcifications and cysts throughout both sides. I've had a total of 5 biopsies over the past 2 yrs and I've had about enough of this stuff. The latest biopsy showed multifocal lesions which meant that a lumpectomy was off of the table. To be honest, I'm fine with that. My BS gave me the option of a bilateral mastectomy based on their trouble reading my mammos and the high level of activity going on. I've spoken to other doctors and have received the same advice. I don't want to live with this hanging over my head anymore. I respect every woman's right to make their own decision. Mine is to remove these defective breasts of mine and to move on from there. I have never been defined by my breasts. I'm feeling sad over what's happening, but they're not healthy. My identity does not stem from my chest. Personally, I'd rather rid myself of the cancer and (hopefully) be done with all of this.

My surgery is scheduled for 12/10. It's taken a while to get to this point. My BS wanted to make sure that the unaffected side was truly clear of cancer. She wanted to know whether or not she needed to remove any nodes on that side so I had to wait around to schedule an MRI and then a subsequent biopsy (ended up negative, just found out today). It's been a long road since my diagnosis. I've had so many appts and tests done, but I'm grateful at how thorough she's been.

It has been such a struggle to maintain any kind of positivity about this, but I've tried to do my best. My mind has run amuck on any number of occasions. I've done all of the what-ifs and scared myself out of my mind. I decided about a month ago while doing the whole waiting game thing that I needed to surrender to the process and stop driving myself half insane with all of it. It has helped. I've been anxious, of course, and none of this has been any fun, but I'm doing the best that I can while I wait.

I've read the posts on here and they've given me comfort. I've logically known that I'm not the only one going through this, but at least I feel as if I'm not alone. I don't know whether I'll need chemo or not. Frankly, I'm more afraid of this than of my upcoming mastectomy. Of course, I will do what I need to do. Comments regarding chemo have made me feel a bit better about it all. Sitting here dealing with the great unknown is very difficult.

My best to everyone for their recovery!

bf2009 · December 2009

Today is my first day of chemo. I just dread this and not fully knowing what to expect

after the infusion as to my bodys reaction to it. ugh. I couldn't sleep last night so got up to read. Everything I read about triple negative breast cancer is horrible. There is a high rate of metastisis

and usually to the brain. I feel like I've been given the death sentance, only worse, a slow painful death over many years and this is just unbearable.

Back from Chemo, it went much better than expected as far as how I feel.. don't feel bad at all.

On the other hand, major problems with paperwork as they lost my echocardiogram at the hospital next door and I had to go and get on them in the diagnostic dept, as that is JUST UNACCEPTABLE !!! Within 20 minutes of my going down there, they had the info, so they could start my chemo. Also was a problem with "rush hour" at the chemo place as it was so loud and noisy by the time my chemo started ( about 1:45 and my appontment was at 10am)

The nurse was nice, reviewed all info with me.

But it was a hassle with paperwork, can you believe they would LOSE a patients diagnostic test? OMG !!!

I feel ok, maybe because I'm full of steriods and zantac, all given IV. Just a little worn down from having to go to the diagnostics, which was a little hike, to ask them WHAT THE HELL? LOST MY TEST and ITS READING ?

I knocked on all the doors in the dept and finally got to the top nacho. In the meantime I see the girls in the filing dept all fighting about it, guess they are the ones who lost it.

I feel ok... a little tired but ok. I"m happy about that because I was ssooooo scared !

KittyDog · December 2009

Hello all. My name is Abby and I was just diagnosed with Breast Cancer at age 46 thanks to a routine mammogram. On Monday Nov. 23, I had a core biopsy done. It was positive for invasive ductile carcinoma. I saw a surgeon on Tuesday who question a lymph node just under the arm. So I had another core biopsy on that lymph node on Wed and it was positive for cancer cells. I had a bone scan, Brest MRI, and Cat Scan, blood work all on Wed. and met my oncologist. Those test showed no other signs of cancer at the time. I had my echo on Friday and got to relax so to speak for the weekend. On Monday, I had a chemo port put in. I go tomorrow to pick out a wig with my little girl. I start chemo on Thursday.

So needless to say I feel like my head is spinning. I am scared and ready to begin my fight. I have yet to receive a full copy of my pathology reports. I am sure that is coming Thursday with my chemo - oncologist visit. I am sure it is considered a Stage 3 cancer just because of the size of the tumor. Glad to have found somewhere to talk!

KittyDog · December 2009

Hello all. My name is Abby and I was just diagnosed with Breast Cancer at age 46 thanks to a routine mammogram. On Monday Nov. 23, I had a core biopsy done. It was positive for invasive ductile carcinoma. I saw a surgeon on Tuesday who question a lymph node just under the arm. So I had another core biopsy on that lymph node on Wed and it was positive for cancer cells. I had a bone scan, Brest MRI, and Cat Scan, blood work all on Wed. and met my oncologist. Those test showed no other signs of cancer at the time. I had my echo on Friday and got to relax so to speak for the weekend. On Monday, I had a chemo port put in. I go tomorrow to pick out a wig with my little girl. I start chemo on Thursday.

So needless to say I feel like my head is spinning. I am scared and ready to begin my fight. I have yet to receive a full copy of my pathology reports. I am sure that is coming Thursday with my chemo - oncologist visit. I am sure it is considered a Stage 3 cancer just because of the size of the tumor. Glad to have found somewhere to talk!

If you have just been diagnosed....

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