If you have just been diagnosed....

dlb823

Valerie ~  Lymphatic invasion means that some bc cells have gotten out of the ducts and were detected in the fluid around the ducts.  It does not mean bc is in any lymph nodes, although it could be.  The only way to ascertain if bc has reached one or more nodes is with a sentinel node biopsy (SNB).  If your sentinel node tests positive, they will remove additional nodes to check them. 

Yes, it's best to have a written list of questions for your doctor(s).  Is someone going with you tomorrow?  I hope so.  We all sort of go into shock during these first appointments, and we either tune out after a few minutes, or become fixated on something that is said, lose focus and aren't really engaged in the conversation.  It's best to have someone go with you who can listen, take notes if necessary, and ask any questions that may escape you at the moment.   

Good luck tomorrow ~   Deanna

valeriekd

hi deanna _ thanks again - met w/ a great md who said he disagreed w/ other surgeon and thinks he can do lumpectomy. As u said he will do sentinel node biopsy but will do mri on nodes first tomorrow am. He also said ca was not as aggressive as first surgeon said. said it took 4-7 years to grow and we have time to think and look at whole situation. The Gilette ctr at MGH is a really nice place. Definitely felt better. Don't feel like this will be fatal  AT ALL -yay! But you spoke about a " thread  " in communication w/ others on this board What does that mean? Thanks again and be well. God bless. V

janet510

Hi, I've just been dx with Padget's disease. I know that it is rare.  I had an ultra sound yesterday and I'm waiting for the results.  The waiting is soooo hard.  Is anyone out there familair with this type of cancer. I feel like I'm living is a fog. I will have to have my nipple removed any  advice on that. I'm pretty scared.

mbarnes

Any one with breast cancer should have their vitamin D levels checked. Check out this web site hhtp://www.vitaminD3world.com It has very good summaries of the data and recently started supplying a micro pill formulation of vitamin D that is a very good deal

dakota_10

prayer .. and being a good listener... give her hope .. there is always hope through Christ.. He saved my life..

Sable43

I'm new to the site and was recently diagnosed on my 20th wedding anniversary. Needless to say there was nothing to celebrate. I have stage 2 IDC measuring slightly less than 2 cm. Just had an MRI and PET scan yesterday and found out that my lumpectomy which was initially scheduled for Sept. 1st would be pushed back a few days; no date has been provided yet and should hopefully know something later today.

I've been riding a roller coaster of emotions this past week. Ranging from self-pity to unbelievable anguish. I don't drink or smoke though I am about 30 pounds overweight and have been beating myself up over not being more proactive in taking better care of myself. For months I felt this stinging sensation around the area of my left nipple; at times the discomfort was sharp. I couldn't feel the lump and although I had informed my doctor about it; we both dismissed it as a natural occurrence among middle aged women ( I'M 43 YEARS OLD ALTHOUGH I HARDLY CALL THAT MIDDLE AGED; BUT CAN'T ARGUE WITH THE FACTS!) I had both a mammogram and an ultrasound last year that showed an abnormality but given the density and the inability to pick up the lesion digitally; the radiologist ( a woman ) told me it was negative and to come back in a year. I expected to go through the same thing this year and did until the radiologist ( a man ) said to me, "I think you should see a breast specialist. Having compared this to last year; I can't let this go and I'd feel better if you saw someone." Needless to say, here I am.

The psychological toll this disease has had on me only makes me angrier. I'm already grieving as if though I won't live to see tomorrow. I don't sleep at night because I'm afraid to close my eyes. I've projected my anger towards God and have asked countless times "Why me?" I have a husband and two beautiful girls; an 18 year old about to start college and a 9 year old with autism. I can't believe that I'm in this position and a day doesn't go by without my crying about it. If I hear one more person say to me, "Just be positive" I'm going to scream...literally. I've never been under the knife before; and the thought of having a lumpectomy frightens me more than you could possibly imagine. I'm afraid that once I get on that table that I'll never wake up.

I'm crying as I type this, and would truly appreciate any advice from anyone who reads this.

dlb823

Sable!  I read your post this a.m., but was too busy to answer earlier.  First, I want to tell you and everyone that, for some reason, this thread no longer seems to get a lot of hits.  Newly diagnosed women logically post to it, but I don't think a lot of active women come back and read here for some reason.  So, just as a suggestion, I think it's better if you start a new topic to avoid having your post lost and feeling like no one cares, which isn't the case!  It's just become a thread that doesn't seem to be seen for some reason.

That said, I'm so glad I saw your post because I can tell that you are having a really hard time with things right now, and I so want to assure you that things will get better.  The first part of this journey is like a surreal nightmare that you keep thinking you will wake up from -- and you alternate between "put on your big girl panties and deal with it" moods to complete meltdowns.  But as soon as you get through your surgery and have the full picture of what you're dealing with and have a complete game plan, it really does get easier.

So much of what you wrote is exactly what we all go through in the beginning.  But I can tell you that your bc cannot be attributed to any one thing you did or didn't do, so please try not to beat yourself up over past choices.  I think you will come to realize that bc happens to a very wide range of women -- many of whom were extremely health conscious before their diagnosis -- and many of whom did everything right -- women who have never had surgeries or illness or ever took anything stronger than an aspirin their entire lives.  Unfortunately, bc just seems to be almost epidemic right now, and many younger women are being dx'd with it as well. 

And tears are a normal, healthy part of the process too, especially at first.  If you find that it's so bad that you can't function, you may want to ask one of your doctors for an RX for a mild anti-anxiety med.  Many women do.  Or look for a natural calming supplement or sleep aid in your healthy market, if you prefer.  A lot of women use Melatonin, for example.

I'd like to talk to you some more, but my DH and son are hungry and making it clear that they resent me being on the computer when they are.  But I promise I'll chat with you more tomorrow.  In the mean time, please hang in there!   I'm so sorry you've found yourself here, Sable, but you can do this!  I know you can.   (((Hugs)))  Deanna

ange4412

I had the diagnostic last 30 th july and i 'm still afraid about the chimiotherapy . I had already one treatment . I don't pass already my ct scan , i'm afraid about that too. (metastases)

DorisFaye

Well, it has been 3 days since my mammogram and sonogram showed a dark, irregular mass on my left breast, near the nipple area.  I wasn't expecting the routine mammogram to reveal anything so devastating so I wasn't prepared to ask questions or ask for more information.  All I know at this time is that it is about 1 1/2 cm and the edges are very jagged.  The doctor who ordered the sonogram didn't volunteer a lot of information; he simply said that it looks "bad" and that we have to "get it out of there".  He told me to contact my Primary Physician who would make the arrangements to have the mass removed.  By reading some of the information found here, I think they are going to do the type of biopsy where they stick something into the mass to hold it in place while they cut the mass out.  The doctor did not use the word biopsy at all ... and he never actually said I have cancer ... so now I am waiting to see my Primary Care Physician who will hopefully explain what is going on and what is going to happen next.  I am in a good place so far with all of this because I completely trust in God to see me through it, whether good or bad.  The greatest change I have noticed is that I instantly began to view life as the gift it truly is and to appreciate each and every second of each day.  The mass did not hurt before the mammogram but now that I know where it is, I can actually feel a little knot and it does hurt a little bit.  I'm not sure if this is from the tugging, pulling, squooshing, and flattening of my breast ... or what ... but the other breast isn't hurting.  At any rate, I am looking for a few answers, and this looks like a good place to start.

cherneski

Sable, I feel your pain.  I was told to come back in 6 months for a recheck.  6 months later stage llla, I chose to have a bilat mx, as I was terrified of it returning.  I am not real possitive about cancer (just check out my old posts).  I hate it and want it to leave me and all of us alone!  I had to go on medication (xanex) and I am still on it, just not as much.  I had terrible nightmares.  The medication helped with that, and day to day matters.  I am so sorry you are here.

I still have people tell me be positive, but not as many as I made it clear to them what an oxy-moron that is.  I am not shy about how I feel about cancer.  I am possitive about my life not  a disease. 

I learned to get copies of ALL of my test results, but I also learned not to try to be a Dr. myself.  I get the reports and write my questions accourdingly, for either a phone follow up or appointment.  I wrote EVERYTHING down.  It helped when I forgot what was said.  DH came with me to all my appointments, but he tuned out a lot of the stuff too, so I write it down.

hugs deb

The_Lily

***Sable***

I too have only just been diagnosed  with bc and am 43 like you.  In the past 5 days I have had a lymph node biopsy, blood tests, chest x-rays and am scheduled for a lumpectomy next Friday the 28th of August, to be followed up with 4 weeks of radiation and, depending on the surgery outcome, chemo. 

I've been through every emotion imaginable and the seemingly endless waiting is driving me more insane than anything else!

Sometimes I'm happy then suddenly the tears just start.  Sometimes I want desperately to talk about it and sometimes I'm tired of even thinking about it. Sometimes I don't want to be a pain to my friends, and sometimes I want to tell them all to just STOP with the well-meaning messages/phone calls/visits/Emails.... and, like you, I am SO sick of hearing the same thing "Just be positive"!!  I too want to scream at the next person who says it. And although I don't drink, tend to live a reasonably healthy lifestyle and am considered a 'low-risk' when it comes to bc, I am a smoker and that has plagued me to the point where I am beginning to beat myself up about it, even though I know I shouldn't. 

 While driving home from yet another appointment yesterday, I had a thought of "this is supposed to be happening!  For some unknown reason, in some yet-unknown way, this is going to be an amazing, life-changing journey for me and those connected to me" and it's helped me to come to terms with it all (although that may change tomorrow - I really am all over the place with it!).  Another thing I realised is that I have to 'own' my disease, that way I can work towards doing something about it.  The alternative is becoming a victim of it.... and I have no intention of becoming a victim!

 Along with all this, I am truly, truly terrified - more than I ever have been before in my rather eventful life.  I am terrified for myself, terrified for my children, terrified for my other family members and friends... terrified of the unknown.

 I came into this forum looking for women like me (you!), hoping that I could connect with other people who really 'get' where I'm at and what I'm going through.  I'm really glad I have and am really glad that you shared what you did as it's the first thing I've read that has helped me to feel connected.  Thank you.

Sable43

In response to you wonderful ladies; particularly The Lily, dlb823, and cherneski; I'm grateful for your support and understanding. Unfortunately I was just recently informed that the tumors in my left breast are larger than the US reported according to the MRI report, as well as questionable lymph node involvement. In addition to this, there are also two suspicious lesions on my right breast that were 'missed' on my most recent mammograms from last month. So I'm having a right breast biopsy this Tuesday and am meeting with an oncologist for further treatment options. My doctor and I are talking chemotherapy to shrink the tumor first and then lumpectomy with radiation but we both want the oncologist's POV. This thing has been like a hit in the gut to me. But despite everything that's going on, my mission is to fight it. No matter how bad it is, I can't give in to this thing.

I mean I'm dealing with it. What else is there in the hell to do? I feel like the star of a badly written sitcom entitled "Be Positive; It's only CANCER!" I've got to have a sense of humor about it or I'll just puddle up. My boss called me yesterday after she heard the news and she was crying! Can you imagine? She was crying and supposed to be comforting me and I swear you'd think she just read my obituary in the paper. I had to calm her and assure her that I was going to be alright! I've got to say it out loud in order to believe it you know? But I hate the 'not knowing.' It's the 'not knowing' that eats at you like acid.

The_Lily

Atta girl, Sable!!  I have decided that no matter what the outcome of all the tests, surgery etc, I am treating this in the worst possible case scenario and am standing up, meeting my cancer head on and fighting for my life!

Also, reading what others have been through in here and hearing how it gets easier once we know what's happening inside our bodies, is giving me a hope I never knew I needed.

Kia kaha he wahine ataahua!  ('Be strong beautiful woman' - in my country's [NZ] native language).

Sable43

Thank you Lily.

We're going to beat this. We are going to beat this.

msroulette

I received a dx of Paget's on May 6, 2009. I was sent for Ultra Sound to determine if there was an underlying cancer in the breast tissue. The ultra sound found nothing. Next, an MRI, which showed no sign of underlying cancer, but did show a 2x8mm mass. The doctors were perplexed, as Paget's usually is accompanied by an underlying cancer in the breast tissue. So here I am, with a positive diagnosis of a very rare breast cancer, and even more rare, there is no evidence of an underlying cancer. I was then sent for an MRI guided biopsy to test the very small mass found. Again, nothing. I was given my options: Lumpectomy, Mastectomy or Bi-Lateral Mastectomy. Radiation may be needed after lumpectomy, if pathology found cancer in the tissue. I opted to go the totally safe route, and do BLM, I have never been happy with my own breasts, and after three months of testing, I just wanted the cancer out of my body and wanted to do my best to never have to go through this again. My BLM was done on August 12. On August 16, I went back to surgeon for post op follow-up. The pathology report showed DCIS. I had made the correct decision in removing the breast affected, and ultimately, I believe I made the right decision in removing both breasts. I am now undergoing reconstruction using TE. I am actually excited to move forward now, I know I am as cancer-free as the docs could humanly make me, and I look forward to new symmetrical breasts.

Sable43

To Ms.Roulette,

Congratulations and I wish you a speedy recovery. I'm faced with chemo first to shrink the larger tumors or double mastectomy. How long were you in surgery, if you don't mind my asking? I do believe that the time could vary but I would at least like a general idea.

msroulette

My surgery lasted 4 hours. The mastectomy portion was the shortest, then the placement of the expanders and fill. My PS said he was able to get 350cc of saline into each of the expanders, so I actually have some resemblence of having breasts. I was released from the hospital less than 24 hours later.

Sable43

Thanks msroulette.

Each day I feel like I'm at least coming to terms with it. It's not a death sentence and I'm in the process of doing something about it. I feel as if though I can and will truly beat this. Since joining this board and reading the other messages posted; I'm willing to fight BC all the more. How dare this disease invade my body! I'm not any less scared but I have the power to do something about it.

MillieD

Awesome attitude Sable.  This is not a death sentence.  You will get through it.  My thoughts and prayers are with you.  Hugs....

dee1961

bump

dlb823

DorisFaye ~  I just saw your post, and I'm so sorry that you're facing what sounds like a biopsy.  But it may help you to know that 80% of breast biopsies do turn out to be benign -- so there is certainly a chance that yours will be. 

I don't know where Elgin, Tx is, but I'm wondering how far you are from a larger city.  I'm asking because those of us who have had bc firmly believe that a breast surgeon/specialist is the one to see when you have any breast issue like the one you've described.  Hopefully, your primary doctor will refer you to one.  If not, I would strongly suggest asking for that specific referral, even if it means a bit of a drive for you.  Having a general surgeon, for example, cut out a possible tumor that hasn't been thoroughly evaluated at a breast center may not be the best idea.

I just want to say once again that for some reason this thread does not see a lot of activity other than from newly-diagnosed women, so it's not a good place to get questions answered or a cross-section of opinion from others.  If you're new and have a question, be sure to explore the many active topics here, and also feel free to post a new topic if you don't see your specific concern being discussed.  In the mean time, if you have been diagnosed, be sure to look for the threads for women having surgery in the month yours is scheduled, or chemo in the month you will start that, to find a more active group of friends and support.  

Take care all, and know that although this is not a journey you'd planned (none of us ever do), you will get through it!     Deanna

Sable43

To dlb823

Thanks so much for the info. that you provide. You seem very knowledgable to me. Just wondering if you were a nurse or practitioner of some sort.

By the way; I begin chemo next week. I'm actually looking forward to it. I feel as if though my life has been stagnant for the past 2 weeks. I have two large tumors in my left breast and after consulting with both my breast specialist and oncologist; feel that this is best while trying to preserve breast tissue prior to lumpectomy ( if all works out that way! ) I'm discussing even taking part in a clinical trial tomorrow. I'm sort of anxious about that but I am interested.

To MillieD and dee1961 "THANKS!" Hugs to you both and all the wonderful ladies on this forum. We are going to beat this thing. I'm so hopeful and so grateful for this community. I feel like I've finally found my voice.

BrendaSharon

I was diagnosed on August 13, 2009. on my L. Breast with cancer! I met with a surgeon, Aug 14th, 2009 and I know I have at least stage 2, invasive, it was 2.5 cm. It likes my estrogen, so I was told I will need an estrogen blocker. So far they said they will do a lumpectomy followed by checking the 3-5 nodes while I am still under to see if there are any cancerous cells in the lymph nodes. If there are no cancerous nodes they will stop there and I will go for radiation for 5-6 wks. My questions are:     How soon after surgery do they start radiation? What effect will the hormone blockers cause to me? I already went thru menopause 5 years ago. A Ray of Sunshine was they biopsied my R. breast as there was something in the MRI. But, YEAH it was benign. I am praying as well they find NO bad NODES, other wise I will have to have chemo as well. Holding my head high, but scared as hell!

momand2kids

Brenda,

our dx were somewhat similar-- I was dx in Oct 2008--you usually have to wait 4-6 weeks after surgery for radiation, assuming no chemo.  I had both, so I did radiation about 3 weeks after chemo ended.  Since you had an invasive tumor, be sure to ask for the oncotypedx test--that can really help you make a good decision about chemo.  The test can measure the recurrence possibilities given your own situation--- I had a about a 15% chance of it possibly returning without chemo, and I knocked that down to 8% with chemo-- it was an easy decision for me... and I had no lymph node involvement.... no matter what, you can do it.. just remember that....

I think you can learn about femara and arimidex on this site.. I take femara along with a lupron shot ( I was premenopausal) and I have found the side effects to be minimal so far.....

It is scary, but you can get through it---- 

Carole

BrendaSharon

Carole,

Thanks so much! Who would I get an oncotype dx test result from? I have seen sooo many Dr's and ~~~~ it gets me confused. I haven't even gone thru therapy yet and I feel like I'm losing my mind. My thoughts constantly just wander, therefore I don't make too many rash decisions. The surgeon I meet said it was aggressive, not invasive as I wrote earlier. Sorry! Like I said I do get confused. And, I'm assuming I really won't know everything until I go into surgery. this is when all will be known.Like it or not. Problem is, how can you make decisions while under the knife, a little too late then, I think. Don't you? With all the tests they run I wish I already had more info. Maybe I'm just impatient. Sorry I'm ranting.

Thankyou again~~~~any and all suggestions are appreciated!

dlb823

sable ~   To answer your question, no I am not in health care, but my sister is, and she is also a 2x bc survivor.  I realize how blessed I was to have that kind of very knowledgeable and understanding support, so I try to play it forward. 

When do you start chemo?  I hope you are still in as good a place emotionally as you seemed to be when you posted a few days ago.  And don't forget to check out the September 2009 chemo thread.  You have such a great attitude, I hope you'll share it with other gals who are starting chemo around the same time you are.

Brenda ~ It looks like Carole hasn't seen your question, so I'll answer it while I'm here.  The Oncotype-DX test is done on some of the tissue they take during your surgery.  Typically your Oncologist will order it.  It will quantify your risk of recurrence and help you understand to what degree chemo will or will not benefit you.  If you haven't already researched it, you can read more about it in the informational section of this website (bar at very top of page). Hope this helps.

Thinking of you both, and all the other newly-diagnosed gals, and happy to answer any other questions you might have  ~  Deanna

valeriekd

Hi I am writing again b/c I think this is the best thread for me as I still feel so new to the club. Never had a serious illness, never used a chat room. I am recovering from a lumpectomy and was told in recovery room that there was one positive node so he removed around 20 around it and am waiting for path results for margin and any more node involvement. I definitely feel better about getting started but am concerned about lymphedema, the possibility of mets and how active can one be during chemo? Can I work if I feel good or is infection a huge issue - like flu? Of course I will ask mds but you guys just seem to know alot. I like you. Hope all are moving forward (I guess we have to). V.

Sable43

To dlb823;

Sorry for not getting back to you any sooner. I started chemo Aug. 31 and am now dealing with 'the burn" from it. GI upset, nausea, fatigue, and joint pain like you wouldn't believe. I'm part of a clinical trial in my area for Ixempra along with cyclophosphamide. Total of 6 cycles; one given every 3 weeks. I'm all for aggressive treatment. Afterwards a lumpectomy with radiation is planned, then hormone therapy. I just want to get better but I know that these things take time.

dlb823

Sable ~ I'm not familiar with the chemo you're on, but can certainly empathize with the SEs, having gone through TC last August-October.   You probably know this already, but it's a good idea to keep a log of your SEs (maybe that's even required for a trial?), and be sure to tell your onc about anything that's making you especially miserable.  There are several antinausea drugs, for example, and if one doesn't work completely for you, surely another one or a combination will.  Did you get Neulasta?  If so, that also causes joint pain, which can often be relieved with some Claritin.

I don't want to turn this thread into chemo chat, as there are plenty of threads devoted to that, and you might even want to start one to ask if anyone else is doing the same trial you are.  But I did want to be sure you knew the above, and tell you that I'm thinking of you and wishing you smoother sailng for the remainder of your first cycle.  Sometimes, it's just the first week that's rough, then the 2nd and 3rd weeks you will feel more "normal."         Deanna

sarahjayne2009

two weeks ago my mum started to get alot of pain in her right breast. my mum has always checked herself regularly and not finding anything unusual, no lump, skin discolouration etc she didnt seem too concerned. so she made an appointment to see her doctor in a week's time.

today she came back devasted, apparently the doctor can feel a mass?! i cant feel it and nor can my mum, the doctor couldnt say whether the mass was attached or not so he's sending her to a specialist, which could take up to two weeks!! being a woman myself i know that these two weeks are going to feel like forever!!! he did say that under her arm is all clear and he cant feel any 'abnormalities' i just hope someone can shed some light on it.

i thought you could feel breast cancer?!! and that it didnt hurt? i feel stupid asking, should i know the answers?

my mum's 53 and has had cysts in the past. shes also been suffering with high blood pressure recently and night sweats, i dont know if this would be related?