Newly diagnosed and full of questions

I too have been newly diagnosed but my news is not good...I am a medical professional myself...I had a report of a perfectly clean mammogram in August of 2013. now in Dec. 13 I have a diagnosis of metastatic breast CA. I did everything right I knew to do but still am here scared.  I am taking a pill everyday but only time will tell if I have a good response.   Apparently the whole thing is a process.  Blessings to you as you navigate these scary stages.  CDS

Philley... I know its scary, but it will improve. Once you have a game plan and start treatment/surgery, your emotional side of things gets much better. Stage IIa is really not as bad as you are thinking. I am IIa. My suggestion to you is to get all the proper tests, don't rush into decisions, and follow the treatment plan. There are threads here on BCO for triple negative which can be helpful. Fox Chase is a very good cancer center... I would ask a lot of questions, bring someone with you to take notes when you go to the doctor.

car3tenn... I am sorry for your diagnosis... Today, metastatic cancer is controllable. Treatments aren't nearly as bad you might think... chemo, radiation, surgery are all doable, as is hormonal therapy. Many times, I think its mind over matter as to how we all handle things. Believe in the treatment.

Hang in there Phillygurl and car2tenn.  It is very scary at first.  Last August I was in the same place you are (newly diagnosed) and while I wanted to know everything, I quickly realized that I was overwhelming myself.  So, I made sure I had great doctors (oncologist and surgeon) and they mapped out a plan.  I understood it, but couldn't deal with it all (chemo, surgery, radiation...) at once.  After a couple of planned emotional break-down days, I set about getting through one step at a time.

For me, chemo was first.  At first, it was terrifying. In fact, I bolted from the room for a few minutes on the first day (before they had me all hooked up).  But I got through it. Last chemo was a week ago.  About half way through chemo, I was able to start processing about the surgery (bilateral mastectomy).  Now, I am processing about the radiation treatment.  It hasn't been easy, but life is too good and each day is too precious to live in fear.

You don't have to see the whole staircase... just have the courage and faith to take the next step.  ;-)

Good thoughts and prayers going your way.

Phillygurl and car2tenn, 

I was diagnosed this past October, in fact I received the biopsy results on my birthday.  I can say I got BC for my birthday.  I was overwhelmed at first.......started as stage1 grade1 which changed to stage 2 grade 2 after surgery.   Went in for my yearly exam with no warning signs.  Mammogram did not show anything however technician found a lump that did show up on Ultrasound.   Everything went so fast to me, diagnose, surgery, port and then started treatment. Hard to keep up with the emotions  and fear at first. 

  Take a few deep breathes, it does get better.  This is a great site to share your  concerns and fears at.  Lots of support, advice, strength and love abound.  

Pam

hi Phillygurl- jeepers your story sounds like mine. I had been having annual mammos since 35 also as my Mum was diagnosed at 45 (she passed away age 50) but I found my lump on 1st Jan this year when annual mammo was due - so the cancer took off in that time frame.

It is very hard to disassociate yourself from your Mums experience - because that is all we know. I too have to remind myself that I am not her. My Mum never had chemo when she was first diagnosed so I didn't hesitate to do that when it was offered to me. I kept looking at what I could do differently that she didn't do. I also only had a lumpectomy (on bs recommendation obviously) and Mum had a full mastectomy. 

All I can say is you WILL get through the next year and you are stronger than you know!!

Car2tenn - don't let your medical knowledge put you in a downward negative spiral!! Keep positive and believe in miracles - they do happen! Find the stories of women who are living proof of that. I read Jane Plants book 'your life is in your hands' - and there's a perfect example of that and a woman who has done great things for bc research worldwide. Our mental thoughts have such a huge impact on our bodies too. 

I was just diagnosed at the end of November and will begin treatment in January (because I did not have medical coverage until Jan).  At first, when I heard the diagnosis, I was shocked, anxious and just plain scared.  Now...as I wait for the first part of treatment, I am ok (I think).  Maybe a little scared of the pain...but feel that I can do this.  At this point, I haven't even gotten the stage of the cancer...but was told it is at least a 3.  Someone here mentioned that life is precious...and I am realizing it even more now.  All of you on this site are angels and a blessing to me to be able to read your stories and words of encouragement.  Thank you so much and may God bless all of you.

When I was first diagnosed (may2013 at age43) everyone here told me the emotional stage, the testing stage was the hardest and it would get easier when I had a treatment plan I kinda thought they were nuts......easier with chemo, surgery and rads ??? But they were so right, when you have a plan it DOES get easier, you get in fighting warrior mode !!! Don't ask Dr Google and have someone do the research for you if you have to or set a timer for like 30 min. It get's overwhelming to read and read......  I just finished chemo and surgery and I'm cancer free Good luck and the support of the ladies on here is most wonderful !!!

Sandy... so sorry for the diagnosis... But remember, stage III is not stage IV. And due diligence and continued follow up even after MX is important. Did you not have radiation? Are you hormone positive? Are you on any hormonal meds? Did you have the BRCA test? If not, you probably should, and then perhaps consider an oofrectomy?

Hi bdavis thanks for the response. I am currently having radiation treatments will need 33 my oncologist said. I am also on tamoxifen because I am ER + PR + HER2 ~ .

I'm wondering if many people get tested for CYP2D6 to see if tamoxifen will work well for them ? 

Yes I had BRCA test and it came back negative which was a relief because of my family history. I have 4 sisters and a 24 year old daughter so it was a big concern for me. I'm feeling really good it's just the mental stuff right now.... I postponed reconstruction due to the amount of radiation. My plastic surgeon said it would be difficult to go with implants, not impossible just more difficult and higher chance of failure. I'm considering the DIEP flap in the future. Any advice or thoughts on the procedure ? Thanks much for your advice. 

thanks again for all the great information! Love this site. 

And by doing the MX, I didn't need radiation.

Ok... not worse than you first thought... so that is good. 

About chemo, it isn't bad. I had 6 rounds of TC (taxotere, cytoxin) and worked fulltime, and even went on a 10-day vacation to St John between tx 3 and 4. So don't be afraid of that. The point of chemo is to kill any cancer cells that might have escaped BEFORE they land on the liver, bones, etc. SO I personally have no regrets with chemo. Plus, you need Herceptin being Her2 negative, and so you need chemo regardless. The hair loss was the worst part, but I have all my hair back and I got through it.

About lumpectomy / radiation vs mastecomy. I had a lumpectomy, then chemo and was supposed to then have radiation. But for me, I chose to have a BMX because I wanted the best chance of no recurrence. The statistics say the survival rate between the two is the same, but the chance of recurrence rate is not.

And by doing the MX, I didn't need radiation. After your sentinel node biopsy (I assume biopsy, not full dissection?) you can decide... So maybe start with a lumpectomy and then think about the radiation vs MX. But if you are BRCA positive, you really need the MX. It also is not so bad. I ended up with a BMX and GAP and DIEP flap reconstruction. I didn't want implants which can hurt and only last 10 years and need replacing. Plus they don't usually look very natural.

Bottom line, you are doing all the right things, and you are young. So do all that you can so you never have to deal with this again.

Yes, I had a lumpectomy, then chemo, then a BMX and reconstruction. And skipped rads (which I could do because I had the MX). And for the record, the recovery from the lumpectomy was a non-event. The SNB was a bit sore for a couple of weeks, and I had to lay low. No repetitive motions, like shoveling. This would give you some time to make a decision about MX and radiation, and reconstruction options, of which there are more than are usually presented to a patient. Usually, a breast surgeon works with a few plastic surgeons and they may only do a couple of different types of recon, and will probably tell the patient they aren't candidates for the more elaborate procedures, but this is usually self serving. Personally, I would have a lumpectomy and SNB, determine if you need chemo, and in the meantime, research reconstruction.

Options include:

• No reconstruction
• Implants with an Alloderm sling (MX direct to implants)
• Tissue Expander and then implants after a few expander fills
• DIEP flap (using your abdominal fat, no muscle)
• TRAM flap (using abdominal fat and muscle)
• Lat flap (using lat fat (from the back) and muscle - but usually not enough fat for a full breast and implants are added)
• GAP flap (using buttuck fat, no muscle)
• TUG flap (using inner thigh fat, no muscle)
• PAP flap (using rear upper thigh, no muscle)
• Tdap flap (same as lat flap, no muscle - but usually not enough fat for a full breast)
• A combination of some of these, like a DIEP and GAP at one time or DIEP and implant
• Fat grafting - BRAVA method... a bit experimental

I have had DIEP, GAP and tdap. most flap women have one flap type... all depends on the body type. 

I also suggest looking at photos. If you post more, you can get access to the picture forum which can help a lot, and helped me decide what I wanted. For flap pictures, you can go to www.breastcenter.com

phillyqur, i got told the same thing about my cancer been grade 3, they said my cancer cells were really angry and very active, i thought at the time, they are not the only ones, i am not exactly thrilled over it all, my tumour was really small and they said, because the cells were angry  that by the time a proper lump had formed, i would of been almost not around, this was the august 2011 and i am still here, i am on tamoxifen for the five years, onlyhad the rads and surgery and the  tamoxifen. i only went in for a mamogram as i ws getting  pestered by Dr nurse to have it done and man that girl saved my life really, she said, would ring me and keep at me, so i thought i had better do it and i did, and i thank God he gave me that nurse who cared enough to be on my back about getting my mamo done. have a great rest of your weekend. hugs