New Dx - haven't wrapped my head around this yet.

janiemomof2

Wow. I can't believe what I have stumbled upon here! My first impression is thank God everyone here already knows all of this infomation and my second impression is - holy cow this affects *a lot* of women!

I do bse but didn't pick up on anything... my mammogram found "something" that led to u/s that led to core biopsy (all inside of 2 days) which led to a phonecall on a Friday afternoon (1/20/12) that I have IDC (invasive ductal carcinoma). My head is spinning. I don't have a full path report yet b/c they are still testing receptor sits for full dx.

After reaching out and looking for recommendations I have decided to go with the Rena Rowan Breast Center at Penn for my breast surgeon and oncologist. I feel fortunate to live in Philly where there are so many options for treatment. My appt with the bs is this Thursday the 26th and it can't come soon enough; I have so many questions.

I am 42, with a 14 year old and 9 year old. We haven't told them yet b/c we are trying to get our emotions a bit modulated first and we want a few more answers from the bs so we feel better prepared to answer their questions.

I have a couple of questions for you... if there is a place somewhere on the boards that I can find these answers and you just want to point me to that thread that is ok too!

1. How soon/how much did you tell your kids?

2. How long does it take to get a "full" dx? I'm sitting with this IDC dx but I want to know about the receptors, I want to know about the lymph nodes, I want to know about spread, etc.

3. What are we talking about here as far as successful treatment? I want to be positive but there is this little voice that is freaking out inside of me and I have a constant pit in my stomach.

4. I still have pain from the biopsy, this is day 6. They left a clip in there for the bs, according to the radiologist. Is it crazy to say I can feel it??! My chest feels tight, my breast is sore. There are no signs of infection, swelling, bruising... all my discomfort is from deep inside.

5. My mass is very far back, near the chest wall. Are there worse places to have it?? Again, I know, crazy question but I have to ask. (If not here than where!?)

I think that's it for now... thanks in advance for your help. ~J.

J9W

J,  welcome to BCO.....you'll get great support here. My dx was DCIS and so I can't answer your questions about treatment but most likely, by the time I done writing this, someone who can give you the answers will be along. I am just writing to give you a cyberhug.

Elizabeth1889

Hi Janie, Sorry you have to join us, but welcome.  We are a great group of compassionate fighters here. My diagnosis was IDC, also, and where you are now with the waiting and unknowns is the worst part.  I hope your BS will be able to answer many of your questions on Thursday.  So much of your treatment will depend on additional information from your pathology report like is your tumor receptive to estrogen and progesterone and if so how much and is your tumor positive or negative for Her2/neu.  Also, you need to know whether your tumor is Grade 1, 2, or 3.  Some information will not be available until after your surgery such as the exact tumor size and lymph node involvement.

I was sore and bruised for a long time after the core needle biopsy, but I could not feel the clip.  That is definitely something to ask your BS about.

Freaking out is normal.  For now, please concentrate on getting through the early stages of treatment rather than the longterm outcome. 

For now, please try to be patient and relax.  Much easier said than done, I know.  It is important that you feel able to trust your BS and medical oncologist.  Never be afraid to get a second opinon.  Please continue to let us know what happens to you.  Sending hugs to you. 

mdg

I am sorry you had to join our club but glad you found this website.  It has helped me in going through BC in the past year tremendously. 

As far as kids - my son was only 4 so we really have to tell him anything except that I had surgery.  Your situation is different.  I hope some people on here with older kids can help you figure that part out.  You may also talk to your cancer center - they should have a social worker/counselor that can help give you advice.  I always think less information is better and then let them ask questions and only tell them what they need to know to answer their questions. 

I had a breast biopsy on Dec 9th last year and then had a lumpectomy and sentinal node biopsy on Dec 23.  It took almost a week to get the results.  My pathology was as they said - stage 1, but went from grade 1 to grade 2 after lumpectomy.  They did an oncotype DX test and that took almost two more weeks.  That told me exactly what my odds were with the make up of my specific tumor genes.  I had a bmx on Jan 27th and the pathology changed a little again - there was one other small invasive area in my breast.  So I guess what I am saying is it really takes time to find out the full diagnosis.  I did find out receptors about a week after my biopsy but HER2 was inconclusive and had to have a FISH test done which took two more weeks. 

If the tumor is near the chest wall, they will probably offer radiation.  I thought mine would be close to the chest wall and they said it wasn't.  Maybe yours won't be either. 

As far as successful treatments - it really depends on your exact diagnosis and even then there are no guarantees.  There is no cure for BC but there are so many more medical options now than in years past and in time there will be more options.  Hold on to that.  What your doctor tells you this week could be completely different than a year from now as far as treatment options.  YOu never know.

Ask about the oncotype DX test and read about that.  That can help you make decisions.  Also try to use some of the cancer life online calculators - I used Adjuvent! online.  Google that.  You may also want to review the NCCN guidelines - that will tell you what the treatment paths are for various diagnosis. 

I am only a few years older than you and my son is 5.  I was 45 last year when I was DX.  It is definately hard with kids.  Just remember that they take their cues from you.  If you look and act scared - they will be scared.  When I had my surgery - I scheduled a sleepover with my son for that date.  I made it sound so fun and cool so he was excited.  Then about 3 days before my surgery I told him I was going to have a surgery and be at the hospital while he was at his sleep over.  I made it sound like no big deal.  I told him I had a boo boo the doctor had to take out so I would be healthy.  He asked where it was - I said in my chest.  He had no other questions.  He said he was said because it would hurt me.  I told him "oh no - the doctors said they will give me medicines for that so I won't hurt much.  They told me I would be ok in a few weeks".  I also focused on having some special things for him when I got home from the hospital that we could do together.....movies, Wii games, coloring, board games.  I told him I would have some presents for him when he got back from his sleepover.  He was so excited about all of that...he didn't worry.  I know my son is much younger though. 

Best of luck....I hope all goes well for you.  The beginning is the hardest part.  Hang in there. 

Mallory107

Janie-you are right now at the worst part of this.  That first couple weeks was the most horrible time for me.  Constant crying and then when I could forget about it for a second the realization would come flooding back that I have cancer!  And the waiting was agonizing....not knowing anything other than the fact you have BC.  Believe me it gets much better as you get used to the dx and you find out more information.    I can answer some of your ?s from my experience-I am also kind of new with a 10/21 DX and a 12/29 surgery.

1.  I worried SO much about telling my 2 boys (10, 7 yo)  I waited until after Christmas and when I knew exactly the game plan to tell them.  I prepared for the worst-even telling all of their teachers so that they could keep an eye on them for behavioral changes.  Well, it went WAY better than I expected it would.  I just said that mommy has a cancer that they are going to have to take out of her so she will have to have a surgery.  I really soft pedalled it so they wouldn't be scared and they weren't.  I think that sometimes we project how we know an adult would feel onto children who do not have the knowledge or experience to realize the seriousness of the dx. Also-they were familiar with BS from the "pink" campaign-even the football players wore pink then!    You may have a little more trouble with your teenager-hopefully a mom of a teen girl will chime in on that. 

2.  It can take a while for the whole DX unfortunately.    THey knew the ES/PG status right away-I was told this with the first  biopsy result.  Not sure why yours doesn't know yet.   But its not until they actually operate that you have the whole story.  For me the whole thing was a 9 week ordeal.  Most people don't go that long though it seems. 

 3.  I can't really speak to this question but will just advise you to be careful with your research on these boards and everywhere else.  It is SO easy to get completely freaked out.  You need to keep in mind that everyone's story is different and it is not good to compare yourself.  I actually had to stop coming here for a while because it was making me so upset. 

 4. I had pain from my biopsy too. Not terrible but definitely there. I felt like I could feel the exact spot where they did it.

 5.My mass was right at the chest wall too (I also had 2 other spots)  THey got clear surgical margins for me.  Actually-the only people who mentioned the location were the biopsy team b/c it was hard to reach..  The BS said nothing really about that being a problem. 

Hugs to you....I promise it will be OK eventually.  I am at such a different place now -A place I NEVER thought I would find in the first couple weeks after I found out.

suebak

I too am very sorry you had to join this group.  I was diagnosed with IDC in March, had my surgery on April 7, at HUP.  They have an amazing cancer center, not somewhere you want to visit, but if you have too, you are in good hands.  My surgeon was Dr Brian Czarnieki (spelling ?), my mo is Kevin Fox.  I did not know all the details of my cancer (size, grade, hormone pos) until after surgery.  They did do the onco score to determine if chemo would benefit me, and it was a 6, which is very low, no chemo. The drs were amazing at getting results to me ASAP.  My mo called on a Friday evening around 8pm to give me my oncotype score.  I did not answer my phone, therefore he called my husband.  He told my husband he wanted to touch base with me ASAP, so that he could get this issue off my plate.  I know it is very difficult, but try to stay calm.  I think being diagnosed with bc was much harder mentally than physically.  I had a lumpectomy and 35 radiation treatments, and I am feeling great.  So far, so good. I do realize my life has changed.  I will worry about every ache and pain, thinking it is the cancer coming back.  But, I must say, I have learned to appreciate the small things in life.  I don't fret over much at all anymore. I guess that is the one positive that has come out of all this.  I will say an extra prayer for you, and am here if you need to talk

CharB22

Hi J - I'm outside of Philly, too. My tx are being done w/Fox Chase. So much of what you'll be basing your decisions on will occur after your pathology report - which I got about 10 days after lumpectomy and sentinal node biopsy. I hear Penn is great. I will be getting 8 chemo treatments (4 of A/C and 4 Taxol) - my MO said that's pretty standard for my type.

I had my dx on 12/1/11, my biopsy on 12/6/11 (with that little clip - but I didn't feel it), and my lumpectomy on 12/9/11 -- very, very fast. I'm actually glad it was fast because it turns out that I am triple negative - which is a more aggressive type, not fueled by hormones. Because of this, my treatment options are somewhat limited - chemo and radiation (unless I opt for the prophylactic mastectomy). No hormone surpressors.

I was very bruised after SNB and lumpectomy and port placement. After lumpectomy, I felt like someone had used my right boob as a punching bag.

As for telling my 2 boys - they are 11 and 14. We told them right away what was going on. They suspected something because I work full time and suddenly I was home more and going to all kinds of doctor appointments. I'm an otherwise healthy 47 yo, that's never sick, so they suspected something. We've been honest with them - on their level. We told them that mom had breast cancer, but the doctor took it all out (my lymp nodes were clear and my margins were clear). I'm getting "medicine" now that will make me sick, but I'm taking it to make sure that the cancer doesn't come back. My hair will fall out (my 11 yo thinks that's hysterical and it's a good thing because if I'm bald, I won't have any more gray hair), but my hair will grow back in. I also got a pre-chemo hair cut very soon after lumpectomy (cut off 10 inches and donated to Locks of love). I still have my hair after 1 treatment, but I think the short cut is helping everyone adjust to the looming baldness. I also stressed to them that as soon as I'm done taking the medicine, I'll be back to the old me. I also called their schools and spoke with their teachers and guidance counselors so that they're aware of any behavior changes (11 yo has ADHD) and to cut them a little slack - if homework isn't done, please don't give them a "0" - it's because I've had a bad night. So far, though, DH has kept up with their homework. My SE after 1st tx were pretty mild, just a little nausea and tiredness, but overall ok.

I still am freaked. I take Xanex for anxiety, which has been a blessing (the Xanex, not the anxiety! LOL). I still have bouts of tears, but I'm getting better.

My little lump 1.2 cm was also very, very deep - near the chest wall. The mamo tech at Fox Chase said I was very lucky that I had a good tech the first time to catch it that deep. Whew.

This place has been a wonderful, wonderful resource. There are a great bunch of women here that have been through it and are going through it. I've learned a lot about what to expect. So I wasn't totally freaked out with 1st treatment.

Hang in there!!

SpecialK

janie - welcome, but sorry you have to be here.  This part is the worst - you have a partial picture, don't yet know the plan, and are imagining the worst!  Once you have the team/plan in place you will start to feel proactive and this will give a modicum of control - at least as far as decision making goes!  As to your concerns:

1.  My kids are older (21 & 22 when I was dx'd) so I told them as much as possible.  My daughter lives at home and goes to Univ of SoFL and was a huge help to me during treatment.  My son goes to college in another state so I saw him infrequently but talked to him often.  My daughter had a couple of friends whose moms had dealt with BC - this was a help to her.  She needed support that came from outside the immediate family.  Your children will take your cue - give them info appropriate for their ages, as much as they are ready for, calmly and concisely - when you feel you can do that without too much emotion.  If you are calm, they will be too.

2. You will receive a full path report from your biopsy - but it is not the definitive one.  You should know hormonal receptors within a week or two from biopsy.  Her2neu status can take a bit longer.  The final post-surgical pathology report is what your treatment will be based off of.  The initial information gathered by your surgeon will dictate what kind of surgery will be offered, but a lot about treatment - and consults with medical and radiological oncologists will be determined by your final pathology, unless it is felt that neoadjuvent chemo is required for you, in which case those consults may precede surgery.  It is a good idea to be prepared for potential diagnostic changes as well - sometimes post-op pathology reveals information not known beforehand, even on your biopsy pathology.  

3.  Treatment will be based on a number of factors.  Your surgical decision, whether lumpectomy or mastectomy, whether or not you need chemotherapy or radiation will depend on tumor size, grade, margins, location, and HER2neu status.  Most surgeons like to have an MRI prior to surgery to help determine tumor size and location to best advise surgical options.  MRI is not always a good indicator of node status.  During your surgery you will most likely have a Sentinel Node Biopsy to determine your node status.  Your surgeon and oncologist can give you treatment/recurrence success rates once your plan is in place.

4.  Can't really advise on the pain - just know that core biopsy is an invasive procedure, and they had to reach back to the chest wall so it is natural to have swelling inside and some residual pain.  Ice and ibuprofen may help.

5.  Your chest wall location may dictate surgical decision, or if chemo is required they may decide that neoadjuvent (chemo before surgery) is desirable to shrink the tumor away from the chest wall.  Chest wall involvement may also dictate the need for radiation regardless of surgical option.

If you find that you are too tearful or anxious I would advise asking for Xanax or Ativan to help calm you, if your surgeon has not already offered it.  Stressing and obsessing are hard to control yourself at this point, I know.  If you have more questions ask away!

rc778

Hi Janie,

Sorry we have to meet this way.  My kids were 17 and 10 when I was diagnosed last year.  My older one knew but I told my younger one very little.  I just said that there were some bad cells in my breast that the doctors had to take out so that they did not make me sick.  I found out my ER, PR status with the initial biopsy, which was very painful for me also.  I developed a large hematoma and was bruised pretty much all over.  Since you don't have any signs of infection, I think the discomfort is normal.  Did you try any over the counters?  I did not get my final pathology until about a week after my BMX.  It is a waiting game unfortunately. 

 I was treated at the same breast center that you are going to.  I've been very pleased with the treatment that I have received over the past year.  My BS, PS, MO and all their teams have been great.  I think you will be very happy with your choice.  If you have any ?'s, feel free to PM me.  My thoughts are with you.

janiemomof2

THANK YOU ALL SO MUCH!!! Your messages here have been all I had to hold onto while awaiting more information... Finally I have more info!
The breast center called today with an updated path report --- the receptor testing results. My breast
cancer is ER+/PR+ and Her2/neu-

So, new questions:

1. What does this mean? I mean, I know it means I would be eligible for Tamoxifen treatment for prevention of recurrence but what does it mean now?

2. I read about Tamoxifen increasing risks of uterine cancer... yikes! What is the general consensus about this drug??

mdg

I am also er/pr+ and her2- That gives you more options for treatment with tamoxifen...aka "tammy". I believe the benefits outweigh the risks but discuss that with your med inc. I started tammy in June.

SelenaWolf

The risks of tamoxifen causing uterine cancer are low; less than 1 in 1000 women.  When compared to the protection that tamoxifen may give them against recurrence/developing a new breast cancer, a lot of women see that risk as "minimal".  I did and I am, currently, taking tamoxifen for the usual 5-year period.  So far, so good.  And side effects have been mild and relatively easy to manage.

That said; however, I decided to be proactive even though I know that the risk for uterine cancer is rare.  I have had a regular pelvic screening programme set up with my doctor for the next 5 years, just to keep an eye on things.  I feel comfortable with that.  Every woman is different, though.  What is comfortable for me, may not be comfortable for you.  But the less-than-1% risk of uterine cancer vs. the 17% protection tamoxifen will give me tipped my decision in favour of tamoxifen.  For some women, this would still be too much of a risk... especially after having breast cancer.  For me, it's okay.

janiemomof2

Thanks for the encouragement. I think you are right, I will plan to take the "Tammy" for the recommended 5 years. I just had my first chemo tx 3 days ago, one down and 3 to go. Then radiation, then Tammy. I can't wait to put all this behind me

Momine

Janie, hormone-positive is generally considered a "good" thing, in so far as anything cancer-related can be considered "good." Because I have a family history of ovarian (mom) and endometrial (aunt) cancer, I opted for a hysterectomy and follow-up with an aromatase inhibitor instead of the tamoxifen. I would probably do fine on the tamox, but I know myself well enough to know that it would cause me more worry than I am comfortable with. It also helps that I am 48, so I was about to go into menopause anyway. 

But Selena is entirely correct. It is very individual how you view the various risks and what you can live with. For example, I also opted for a BMX, because I did not want to deal with constant checking of the remaining boob.