invasive ductal carcinoma

Oh, by the way...I did do chemo from the start...I left that out! oops!!! I am 46. The lump that i had removed was 6cm. My entire breast was hard as a rock...AND IT"S GONE! My surgeon is itchin' to do a masectomy, but HE ordered tests. a ct, bone and pet scan. Mom's mind has to be right before undergoing anything... starting chemo, surgery...anything. Has this doctor suggested any tests? I wouldn't settle for anything less than the ct, bone and pet scan. That was my first course of action after my initial diagnosis. We need to know if it has spread. Get on that NOW!!! BEFORE a masectomy. Especially if mom is against the idea. Her mind has to be right ! I can't stress that enough! You must know on all levels what you are dealing with. I had all tests within a week and a half.  I was expecting to grow a third eye from all of the radiation, but it was necessary. I knew exactly what I was dealing with and could take action.Alot of people on this site don't take me seriously.   I am  very positive and I think it's hard to swallow for some folks. But I am doing something right! And I want to share it with anyone who is willing to step out of the box.  . Pleeease email me!!!!! I wil check frequently.

Hi. New here, diagnosed 3/17/08, IDC, 2.5 cm, grade III, er/pr+, her-.  HAVING MASTECTOMY w/o reconstruction 4/2/08, chemo, then prophylactic mastectomy with reconstruction on both sides.  Don't want to give this evil disease another chance at me.  Having chest xray, CT scan and bone scan next week, VERY anxious and terrified about the cancer having spread.  Any little ache or pain makes me wonder....

Any advice? 

HI Gymrat - you are in the same place I found myself back on February 5th.....53 years old, diagnosed with IDC on a routine mammo, 1cm Stage 1. After many MRI's and other scans to rule out any spreading (what a relief to know it hadn't spread yet).....I opted for a skin-sparing mastectomy of my right breast followed by immediate reconstruction using DIEP. My dad also died of brain cancer (astrocytoma) at the age of 59 and my maternal aunt died from breast cancer. My paternal grandmother died from breast cancer in her 70's. I was a nervous wreck throughout the month of February..........thank God I found this web site and all the wonderful information and wonderful women who shared their stories. It made it much easier for me to decide to get the mastectomy. Although lumpectomy with radiation has the same mortality rates as mastectomy, it has a HIGHER rate of recurrence......and this is what I wanted to prevent as much as possible.

My advice is for you to try to relax, do as much research into your cancer as you can and try to visualize your future with or without your breast. See how comfortable you think you can be with the worry of recurrence in that breast.........then ask your breast surgeon his opinion and visit a plastic surgeon and ask him for pictures of reconstructions. Better yet, ask the plastic surgeon for the name of a patient to talk to who had the kind of reconstruction you are thinking about.

My DIEP reconstruction went very well. I was sent home after 4 days, but then developed a staph infection and had to be hospitalized for 11 days on intravenous antibiotics. It was no picnic, but through it all, I was relieved knowing that my cancer was gone - that my lymph nodes were all clear and that it was just a matter of time till I got home again. I feel so much better now and am looking forward to seeing my plastic surgeon for contouring and nipple reconstruction. The hardest part was the pain from the "tummy-tuck".....I had 3 c-sections and somehow thought the tummy-tuck would be less painful - how wrong I was! But I am allergic to morphine, so your experience could be much less painful than mine.

So take a deep breath Gymrat - do your research - listen to the stories here from other women - and trust your instincts about what you will be comfortable with. Everyone is different - everyone's cancer is different - but together we have a strength that is amazing!

Wow, people are droppin' in so fast, I can't keep up.  I had fallen asleep at the keyboard I guess.

sueper13, it sounds like you are attacking your BC head-on.  I had a mast/SNB with no recon on Feb. 5, so I'm 2 months ahead of you.  Still waiting to hear about chemo, but recon is not in the cards for me, nor is a prophy on the other side at this point.  My dh thought taking one of them off was drastic enough.  I just couldn't deal with knowing there was a 1.8 cm tumor buried in such a small breast, and the surgeon needed to get it ALL out (plus good, clean margins).  My mast was a good idea. You still have awhile to wait, but it will come soon enough.

gymrat, the MRI is a great tool to tell whether there are any other tumors in that breast or on the other side.  As for whether to have a mast or just remove the lumps, I went with a left-side mast even though my surgeon said I had the option of a lumpect/rads.  I didn't want to have to deal with the risk of "dirty margins" with the lumpectomy, the se's of rads, or the mental trauma of having to monitor the remaining breast tissue for new lumps.

That's just me, though.  I like things simple.

Hugs to all!

otter 

Thank you everyone for your replies. This is all so overwhelming and difficult and this site is wonderful to ask questions from others who are going through the same thing. I am leaning toward a mastectomy with reconstruction using my own tissue if I can avoid using my abdominal muscles. Has anyone tried this option? Is the recovery time a lot more difficult if you do it right away?

TO inlimbo

Did they do a sentinel node biopsy when they did your lumpectomy? I have been told I will need to have that done when they schedule my surgery. They do a freeze dried test while you are still under sedation to see if they need to remove more nodes or can stop. I am really trying to think just good thoughts on that one and I will pray for you too.  

Hi inlimbo -

I'm just a few weeks ahead of you, more or less. (BTW, I'm 5,1(w/b 52 in July). I had my biopsy on Feb 12th & was diagnosed with IDC. I saw my medical oncologist about a week after the biopsy, and we discussed the pathology report & what she viewed as my best course of treatment. My tumor was approx 4cm x 4cm x 3cm, estrogen & progesterone positive, and HER-2 positive, grade 3, with enlarged lymph nodes in my armpit. Based on tumor size & lymph node involvement, my med onc said it looks like stage 2. Her office then arranged for the CT scans (chest, abdomen, & pelvis) & bones scan, as well as a Muga scan. (I still have to get the Muga scan done; needed to reschedule due to timing issues.) Fortunately, the CT scans & bone scans were clear, although the CT scan showed a cyst on one of my ovaries (something else to take care of, but it's a cyst, not cancerous). The Muga scan just needs to be done before chemo, as a pre-treatment picture of my heart muscle function.



I had a lumpectomy and axillary lymph node dissection on 3/13, & in my post-op appt with the surgeon on 3/20, I learned that although they got clear margins in the tissue around the tumor itself, they found additional "islands" of cancer cells in the extra "slices" of tissue that the surgeon took out, separate from the tumor. (Fortunately, only 1 out of the 19 nodes removed was cancerous.) So I need to go back for a re-excision, probably the week of March 31st. So far, they're still talking further lumpectomy, rather than mastectomy - although if the 2nd surgery comes back showing additional cancer, or doesn't get clear margins, I think I'm going to just go for the mastectomy at that point. (Three surgeries is enough!) I have another appt with my med onc tomorrow, at which time I believe she'll lay out a more detailed/ less tentative plan, although maybe not totally definitive since we'll need to see the results from the upcoming 2nd surgery.



Best of luck, & please keep us posted!

Susan

Gymrat - I had the surgery you are thinking about.....a DIEP is basically a muscle-sparing free-Tram (a "tummy-tuck" where the fat is removed and using micro-surgery, the blood supply reattached to the breast area). The surgery took a total of 7 hours (including the sentinel lymph node removal) - the benefit of this surgery was that I have less scars........the mastectomy was performed by removing the nipple and areola and the reconstruction was through the scar under my arm-pit that was created when removing the lymph nodes. (Fortunately my lymph nodes were cancer-free!) I stayed in the hospital for 5 days after the surgery and was sent home with 3 drains (two in the abdomen and one in my new breast). However, I ended up back in the ER with a fever because I developed a staph infection. They kept me in the hospital for a total of 11 days until my fever was gone - now I'm home, my drains are gone, my fevers are gone and I'm feeling soooo much better! My oncologist is pleased I went ahead with this surgery because I reduced my risk of recurrence to nearly 0%...........and I won't need chemo or radiation. I still will need meds to prevent recurrence in my left breast of course, but I'm so relieved now that the major surgery is over. I'll be seeing my plastic surgeon this week to discuss the next step (nipple reconstruction and reshaping the breast) but as long as I continue to improve in my health I'm happy that I went through with the surgery, even though it was longer. I hope this information helps you with your decision!

Hi to all,                                                                                            I thought I'd jump in here to give an update. The Medical Oncology consult was pushed back from tomorrow at 10am. to Friday at 1pm. I was told my pathology report is not back yet. What's another 4  days of worrying to me? I'm already on enough Wellbutrin and Zoloft to launch the space shuttle! I'm still going for the CT scan of chest, abdomen, and pelvis tomorrow at 1pm at least I think I am. I went to the clinic to pick up the referrals and guess what? They weren't there. I waited 1 hr and 45mins. for them to tell me all cat scans must be approved by the Supervisor and the Supervisor was not in today. I came very close to getting up on a chair in the middle of the clinic and screaming I HAVE CANCER YOU #*&@*# S  CAN ANYONE HELP ME WITH THIS??? I did not do it, instead I burst out into tears and caused a scene making a complete ass out of myself. I was told the Supervisor would call me on my cell phone today to talk to me. I went to work with my cell phone in my pocket and SHE NEVER CALLED. I feel pretty helpless right now, I'm not used to having a complete meltdown in such a public place. I decided to call the hospital tomorrow and ask if they could contact the clinic for me. I hate not being in control of anything. I've got to turn all this over to GOD, I can't handle it anymore. I sincerely hope and pray all of you get through this. Goodnight.

Oh inlimbo, I'm so sorry for you. I know that we're just another patient to these people who deal with so many every day, and most of them have been very kind and professional, but it is SO maddening when this kind of crap happens! And YOU feel like an ass, but it's inevitable that we have these meltdowns. I had to re-schedule a bunch of stuff with my oncologist for the third time after they scheduled my port placement with my surgeon (who doesn't do them) and then scheduled my mastectomy with my plastic surgeon's brother - oops!! Thank God my meltdown at that moment was on the phone with a VERY compassionate oncology scheduler who then went and found the PET scan results I was obsessing over and got permission to tell me that they were all clear. Bless that woman. And you got stuck with a promise of a call from a Supervisor who never called - oh, I hope you can sleep tonight, inlimbo, and I hope and pray that everything works out tomorrow. You truly are in the worst place right now - it will all come together when the tests are in and your plan is in place, but you have to be strong to make it to that point. And don't be afraid to tell them the problem!

God bless you and best wishes to get you through all of this-

Sue

I am having double masectomy on April 2 too. Scared about surgery but more scared that the cancer may have spread- I share your anguish

Deb