If you have just been diagnosed....

jessica34

I'm 34 years old and was just diagnosed with Invasive ductual breast cancer. this seems like a nightmare I am not waking up from. has anyone heard of cold caps?

dlb823

Hi, Jessica ~ So sorry to hear about your diagnosis -- and yes, it does seem like a nightmare at first that you think surely you will wake up from.  That's exactly what I kept thinking -- or that I'd been in a car wreck on the way to my surgeon's office, and I was unconscious and dreaming everything that was happening.  So, believe me, we understand!  It's all very surreal, especially at first.

As far as the cold caps, yes, they're made by Penguin, and some women here report great results with them.  Do you know yet if you'll need chemo?  To read more about them, see if you see a search box to the far upper right of your screen.  Sometimes it disappears from my screen, but it should be on the same line as Member List/Help/Community/Search above.  In that screen, try searching Penguin or Cold Caps, and you should be able to find threads were they've been discussed.  If not, feel free to start a new thread in the Chemotherapy forum (Forum Index above) asking for input.

Hope this helps.   Deanna

Fightinlikeagirl

Hi my name is Mandy I'm 30 yrs old. I was diagnosed on 7/29/10 with BC through all that wonderful further testing that they did, they also found I have lung cancer in my left lung. I DON'T SMOKE, NEVER HAVE, NEVER WILL. SOOOOOOO not fair. I am having my 3rd round of chemo tomorrow. My chemo is TCH. Just had the lower lobe of my left lung removed. Trying to recover from that while doing chemo. I should be done with chemo in January & I will then have my bi lateral mastectomy with full reconstruction. I keep fighting like a girl and can not wait for the day that comes when I can say I"M A SURVIVOR!!!!!

Alyad

Fightinlikeagirl, You are already a survivor!  Was the lung cancer a totally different cancer or bc spread to the lungs? Hang in there!

dlb823

Wow, Mandy, I'm almost speechless!  As if a bc dx @ 30 isn't unfair enough, to then find out you have lung cancer, too?!  That's just incredible!  

Like Alyad, my first thought was, are you absolutely sure it's not bc in your lung?  Please reassure us that your docs are totally on top of this possibility.  It just seems so strange to be dealing with two separate cancers at the same time.  I wonder what the odds of that are?

(((Hugs))) to you, and so glad to see your fighting spirit coming through loud & clear in your post!      Deanna

ForMyBoys

Hello. So glad I found this. Diagnosed 2 weeks ago. PET, MUGA & Brain MRI and then hopefully Chemo on Friday.

dlb823

Welcome, Schelly!  I'm glad you've found BCO, too, although I'm so sorry about your diagnosis.

Sounds like you're doing pre-adjuvant chemo.  You might want to find the November 2010 Chemotherapy thread here (click on Forum Index above; then scroll down to the Chemotherapy section), where you'll find quite a few women also starting chemo (either before or after surgery), who will be a great support group for you.  Do you know your Her2 status (+ or -) yet?  Either way, there are entire Forum areas for your situation -- TripleNegative bc or Her+ bc.  Each type has some specific treatment guidelines, so just another place (depending on your Her2 status) where you'll find women with common concerns and tons of information sharing and support. 

Good luck with those upcoming tests and with your first chemo.  And let us know if you have any other immediate questions.    Deanna

ForMyBoys

Thank you, Deanna. Her2 is neg. PR was weakly positive and needs to be re-done at time of surgery, so I am not quite sure if Triple Negative. Yes, I am getting pre-adjuvant chemo.

dlb823

ForMyBoys ~ You might also want to check the Chemotherapy Forum here (click on Forum Index, above).  Anchored at the very top of that forum is a list on things to get for chemo.  It helps to be prepared with things like Biotene mouthwash, to prevent mouth sores, etc.  I stocked a little basket with 5 ot 6 things I had ready to go to avoid unpleasant side effects, and you might want to do the same.   Deanna

Raven02

Thank you for posting those websites, they were very helpful as I am newly diagnosed with IDC. I want to thank everybody in advance for helping me through this.

Alyad

Raven,

you have come to the right place! I know your head is probably spinning right now- but it does get better once you have a plan for treatment in place. Do lots of research here and take your time making big decisions. There is a 5 post per day limit, but you can PM (private message) any members with questions as well.

msphil

to newly diagnosed ladies, my prayers go out to you all,I know the exact feelings you are going through, please know that it is a rough patch you will go through BUT you can get through this devastating time, we have been there, be POSITIVE and have HOPE, that is what got me to (HERE),  couldn,t have done it without GOD first, to call out to and then to family and friends, and of course my sisters here.  For inspiration to you and others is my purpose now, I am a 16 yr breast cancer survivor, in December 20 th it will be 17 years(Praise the LORD GOD). you are all in my prayers.  msphil 

Fightinlikeagirl

Sorry haven't been on in a while. Been recovering from surgery. As soon as I started to feel better I had to go for a chemo treatment. My goodness I just can't seem to catch a break. But as I say - Chemo SUCKS but if it sucks the cancer right out of you than YEAH CHEMO!!!

Alyad- you had asked about my lung cancer. Believe it or not. Thankfully my lung cancer is completely different than my breast cancer. I'm lucky that it didn't spread.  

esksmom

I am new to this board and am very anxious. I was just diagnosed on Monday.  I had a lumpectomy and lymph node removal.  The pathology report should be available today.  The tumor was about 2.5 cm.  I am just waiting to hear the next step.  I won't be meeting with the doctor until Friday due to the holiday.  I'm hoping that chatting with people who have been through this well help...

dlb823

esksmom ~ I'm so glad you've found us, although I absolutely wish you didn't have reason to be here.  Good luck with your appointment today.  Please come back and let us know what you find out, and hopefully we can help you navigate what's ahead.

As far as being anxious, if it interferes with functioning or sleeping, many women ask their doctors for a mild anti-anxiety RX.  I didn't, but it's pretty common, if you feel you need one temporarily.  Or if you're into natural healing, you'll find options in your health foods market.

I hope you'll let us know what your find out today.  Good luck @ that appointment!   Deanna

dlcw

Hi All - new to this group as of tonight.  I had my annual gyn appointment last Thursday, found a 'thickening', mammogram/ultrasound Friday, biopsy today.  Both the radiologist and the surgeon that didn't offer any hope that it's anything other than cancer.  The radiologist report indicated a mass of almost 4 cm (big!) and one abnormal enlarged lymph node.  The surgeon biopsied both the lymph node and the mass.  From what I've read does this sound like a Stage IIB at least?  I know there are lots of variations in the specifics of the cancer, but I'm trying to focus on learning about the stage most likely to be relevant to me.....the threads here seem like you guys have LOTS of info - I'm hoping someone can answer a couple of questions:

if I have it in one node, is it likely in more than one?  Does an increase in the number of nodes that are positive mean a worse prognosis? or is the presence in one node enough to indicate it may have gotten further?  Do they typically take lots of nodes to check them? or only the enlarged one

The surgeon said that the statistics don't indicate better overall survival with mastectomy rather than lumpectomy - does anyone have info on that?  I had just assumed that a mastectomy was a more conservative course of treatment and that was better but she says that's not the case.

how fast did you all move in getting started on treatment?  I've only know for 4 days that I likely had it and I can't stop thinking about that it's in there and could be spreading - I realize that's not really rational but not doing anything right now is making me crazy.  I understand that after the pathology comes back I'll have an MRI and a PET, then meet with the oncologist to plan next steps and that it could be a few weeks before we actually get started.  Is that a 'normal' timeframe for getting going on treatment?

I am 47 and have a 13-year old daughter and a 9-year old son.  Haven't told them yet as I'm waiting to have more info on what might happen and when.  Would appreciate any insights you all might have on ways you broke it to children and ways to minimize thier stress.

 Thanks in advance for any info you can share.

Donna

dlb823

Hi, Donna ~ I'm so sorry about your abnormal mammo & u/s, and I hope both you and the radiologist might still be suprised with a benign outcome.  In the meantime, let me answer the questions you've asked..

Staging ~ The informational side of this website has information about staging.  Go to the bar at the very top of the page -- Symptoms & Diagnosis and search "staging" for a complete explanation.

Positive Nodes ~ Our lymph nodes are there to catch harmful things, like breast cancer cells.  Having one positive node does not mean there is a likelihood you will have more, but it does mean more nodes will need to be checked to help with staging which affects treatment.  In other words, a breast surgeon usually checks a sentinel node first.  If it's positive, more nodes are normally removed and biopsied.  Having more positive nodes doesn't necessarily mean a worst prognosis, but it will mean more aggressive treatment.

Lumpectomy vs. Mastectomy ~ Assuming your MRI and PetScan show no additional areas of concern, and assuming your breast surgeon believes she can get good margins based on the size of your breast and the size/location of your lesion, then there is no difference in outcome with lumpectomy+radiation vs. mastectomy. 

Normal Timeframe ~ Generally about 4 weeks to get the necessary pre-tests done and surgery scheduled.  If you opt for a mastectomy with immediate reconstruction, it might take a bit longer for your breast surgeon and plastic surgeon to coordinate schedules.  Although we all want this stuff out of us as soon as we're diagnosed, and it's hard not to envision it spreading while it's still there, the truth is most bc is very slow growing.  In fact, it takes something like 10 years for a bc lesion to reach a size where it can be imaged or felt.

Hope this helps!  Feel free to let us know anything else that's on your mind.  I'm so sorry this is happening to you, especially as we head into the holiday season.  But if it turns out there is a problem, I'm glad you've found it, and I hope we can help you through it.    Deanna

DC197

Hi Everyone! This is my first post. I had been for my annual gyn in Aug and my dr. didn't feel anything. It showed up suspicious on a mammogram. I was diagnosed in Oct. after an ultrasound, biopsy, and MRI. I had surgery a week ago, and got the path report last night. I had a 2.5cm lump with 12/25 positive nodes.I still have drainage, and my next appt is next Tues. and hopefullly it will be taken out. I know I will have to have chemo and radiation, but I don't have an appt yet with an oncologist. How long do they generally let you heal before starting chemo? I was told I would probably need a port. With the holidays coming, I am so nervous about starting chemo and not being able to enjoy the holidays. I have been reading the posts and feel very encouraged. Thanks for being here and letting me share.

Diane

dlb823

Hi, Diane ~ I'm so sorry about your diagnosis, but glad to hear your surgery is behind you.

My guess is your oncologist will want you to start just as soon as your incisions are completely healed.  Since many doctors take vacation the last two weeks of December, you might be told it won't be until the first week of January.  But with multiple positive nodes, if you're healed sooner and they can accommodate you in spite of holiday schedules, they probably won't want you to wait.  So I think it will just depend on how they can schedule you.

Let us know when you have your port appointment.  I have a little tip I'll pass along to you if it turns out you definitely need a port.

Good luck getting that drain out on Tuesday.  You'll feel so much better once that's out.   Deanna    

rachel5738

Hi Diane--After my lumpectomy and node dissection, I waited about 3 weeks until the incision wsa healed before starting chemo. I did meet up with the Oncologist about 1 week after surgery when the pathology was available. We reviewed it and then he took a look at incision and said we would be waiting another two weeks--sure enough, I started chemo about two weeks later. Once you meet up with Oncologist and get your plan--things will become more clear. Take care, Rachel

dlb823

Donna ~ My post last night was getting quite long, but I also wanted to address your question about telling your kids.  I would very strongly suggest that you say nothing to them at the moment.  Since you don't have an absolute diagnosis, there is no reason to let them know that you're having tests.  And even if you find out it is bc (which we're hoping it isn't), many women find it easier to wait until they at least have their surgery scheduled to tell their children anything.  That way, you can frame the information in specifics, with assurance that you know what's happening and things are under control.  I think it's not good to share the news that you have (or even may have) breast cancer, but leave so much open to fear, incorrect information and imagination.  Far better to be able to reassure them with information like, "The doctor says we've found it very early, and he thinks I will be fine after my surgery next Wednesday, and maybe some additional treatment." 

Hope this helps....  Deanna

dfwgal

I was just diagnosed with BC. Have been having tests and doctors appointments consuming my days. My BC is DCIS per Pathology but my doctor says what concerns her is the size and have it is easily palpable which do not coinside with the pathology report. My options at present are Lumpectomy with radation  or mastectomy with reconstruction. I would immediately opt for the lumpectomy except, I have implants. Which if you know about implants they have a lifespan and do not do well with radiation. If develop the implant contracture from the radiation, "they" may be able to replace the implant but that is not for sure. Also I would have to worry about symetry post procedure.  I am leaning toward the Mastectomy to resolve the issue about the implant AND never have to worry if I feel anything again.

However, I would still have to figure out if I want to keep the right breast and pray it remains clear or remove it prophalyatically at the same time. I have been playing pros and cons all day and still not clear on what I feel is right for me. I am also a single gal and worry (stupidly) how a man will react to either option if I get into a relationship. 

"Nice boobs" are a vanity but I admit to being a little vain.  However, the nipple sensation loss is not optimal either.  Peace of mind knowing it will never recur is a plus but I know if it would be covered via insurance, I would say take the defective one, lift the other then make the defect look the same as the good one. So that is where I am going to find out. I see the plastic surgeon tomorrow and we will see if there is a way I can have the best of both worlds.

Hugs to all, joining the battle with you. We shall overcome!   

dlb823

dfwgal ~ So sorry about your diagnosis, but I'm very glad you've found BCO.  A couple of thoughts on your situation... When you say your doctor has a concern about the pathology report, is this your surgeon or primary doctor?  Have you talked to a breast surgeon yet?  If there is any discrepancy or question about your pathology, by all means have your slides read by a second pathologist.

As far as whether to do a lumpectomy or a mastectomy, so much depends on the size and location of your lesion, and how confidant a breast surgeon is that he/she can get good margins with minimal disfiguration.  And, while others have made different decisions, I would not give up the second breast for the possibility of a problem down the road that may never happen.  Some women do, but be sure to ask your breast surgeon about the real odds of that happening to you before deciding.  Also, when you lift the good breast, the nipple sensation can change.  You don't lose it altogether, but mine is definitely different than it was before.

Already having implants does complicate the potential need for radiation, and I'm sure there are threads here (check the Radiation Forum, Forum Index above) with good information on that.  Or you might want to start a new thread asking about current, firsthand experiences from women who had the same situation when diagnosed.

Hope this helps!  I'm sure with the right guidance and time to think about it, you'll make the best decision for you.     Deanna  

dfwgal

Deanna thanks, I will look for the radiation forum.  I saw the breast suregon and she was the one who had concerns with the pathology report. Since it was saying Low to Intermediate DCIS  and she could see and feel the lump which is not typical with in situ. I flucucate between the mastectomy on both sides or one. I don't like the "beast" in the left breast and with it being flaky between the path report and the US/Mammo report I am leaning toward the removal for peace of mind.  Also, the implant there has been causing issues for a year or so and I have a gut feeling it will only be worse with the radiation. I was told they could remove the implant and Possibly replae it after the radiation, but no guarentee that it would be replaced. So I would be lopsided. (Vanity again). I would like to keep the right breast if I can make them match. Since the right would be cosmetic without the mastectomy it would add to the costs and I would still have to watch it very closely for peace of mind. Hopefully the rad forum will enlighten a bit more. Tomorrow I have a list for the plastic surgeon too.  So many questions, not enough answers and I hate making a decision when none of the options are what I want. I want it all.. lol

dlb823

dfwgal ~ I felt much the same (wanting it all) when I was faced with making a decision about which kind of reconstruction to have.  What my hubby suggested that finally helped a lot was not just a list of "pros" and "cons" for my options (which I'd already done and was frustrated about because my pros & cons for each choice were equal), but numbering each of my criteria in order of importance.  For example, "natural" and "minimal scarring" were both pros for different types of recon.  But realizing that of the two, "natural" was of higher importance to me, helped me figure out that I probably would be happier with Diep flap reconstruction, which is what I did -- one side only.  Hope this suggestion makes sense and will help you, too.      Deanna

dlcw

Thank you Deanna - I really appreciate your quick response.  I have decided to wait until I have a definite plan and timeframe for surgery and treatment before I tell the kids....problem is I keep getting weepy and having to leave the room - I guess I am focusing on the worst case scenario right now - I'm not usually like that but in the absence of any specific info I keep going to 'what if it's stage 4...'.  Anyway - my surgeon said she may have results of pathology today from the biopsies and will call if it comes in - otherwise I'll know Monday.  Going to try and enjoy the holiday and stop reading until after I know more about my specific case.  Thanks again - I know this site is going to be a huge help with going through this process.

Donna

dlb823

Donna, what you're experiencing is totally normal.  We've all been there.  Many of us describe it as a rollercoaster ride.  One minute you're fine, and the next minute those thoughts you described creep in.  But those worst scenario cases are very few and far between.  These days, most breast cancer lesions are caught early thanks to advanced imaging, and the great majority of women who are diagnosed get treatment and move on with their lives, more grateful than ever for days like tomorrow.  I know it's hard, but you will get through this.   

(((Hugs))) to you, and please let us know when you hear anything.     Deanna

dfwgal

Hugs to all.  Today was a good day despite 2 doctor appointments and an MRI. I met the plasctic surgery and he really was great.  I only "lost it twice" but got the water waorks back under control and we had a great conversation of options. I will meet with him again after the MRI comes back. Breast doctor will talk to me Monday or Tuesday and PS is Wednesday.  My Internist went ahead and got pre op stuff done, so labs, ekg, xr and every other test known to man has been complete. Feeling much better about options so that is a small win.

dlcw

Ok - got the call from the surgeon - biopsy confirmed what both she and the radiologist thought - invasive ductal in both the breast and the one enlarged lymph node they could see on ultrasound.  I have an appoiontment with her on Monday, and they are ordering an MRI and a PET.  Question - should I expect that there will be more info from that original biopsy?  Do they use those types of samples to check for receptors and grade? or are those characteristics determined from the tumor after it's removed?  It seems like the information on receptors and grade are important in choosing the drug regimen so I am curious how they figure out what to give you if you choose neoadjuvant therapy?  Anyone have any experience with this?  I'm also being referred to an oncologist but not sure when I will get in so maybe I just need to be patient and see what she says...although waiting is hard!!

Thanks,

Donna

Alyad

Donna,

They should be able to tell the ER/PR  and HER receptors from the initial biopsy report- it may take a few more days for that info- I had the initial results it was IDC the day after biopsy, but didn't have the other details til later appts. So yes, expect more info. Whether to do neoadjuvant chemo or not is usually based on tumor size and breast conservation issues and yes the chemo drugs  you have depends on the pathology.

Sorry you had to join us here, but you are in the right place!

Dayla