Topic: Recurrence after bilat mastectomy?

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: Jan 17, 2009 11:17AM

Posted on: Jan 17, 2009 11:17AM

slmdavidson wrote:

I've just had a recurrence after a bilat mastectomy 15 months ago.  Just wondering if anyone else has had this??  I thought I was done with breast cancer after removing both breasts!  I did not have rads, chemo or tamoxifen last time.  Just had my "lumpectomy" and 5 LN taken out this week, and still waiting on the pathology report.  Looks like probably radiation this time and tamoxifen but not sure yet about chemo.  Will know more at my follow up appt this week.  I guess it was good I found it early - it was right there under the skin.  Seems like I read 1% recurrence rate after mastectomy but that seems high to me since I haven't read much about it.  Anyone else have this?  Thanks, Laura

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Jun 11, 2013 07:09AM beesie.is.out-of-office wrote:

sciencegal, after my single MX, I asked about MRIs but both my oncologist and my breast surgeon felt that I didn't need to have them.  It was only when I went for first mammo on my remaining natural breast after my surgery that the radiologist noted on the report that I have extremely dense breast tissue, and given my history of breast cancer, she felt that MRIs should be added to my annual screening.  She included that on the report too. Since the radiologist is the expert on screenings, at that point my breast surgeon agreed and told me that I should continue to get annual MRIs for as long as the radiologist feels they are necessary.  7 years later, they are still deemed to be necessary.

I'm in Canada so I don't need to deal with insurance approvals - if a doctor recommends a test, you get the test - but you might be able use a recommendation from the radiologist who reviews your mammos to help you get approval for the MRIs.

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Jun 11, 2013 10:21AM adgirl5 wrote:

My MO is a top specialist in aggressive breast cancers.  She feels that with my bilateral any local breast recurrences could be palpitated, hence MRIs are not necessary.  She would not hesitate to do both ultrasound and MRI if we felt something odd.  In fact I've had an ultrasound since my exchange surgery.  I felt a lump near the outside of my non-cancerous breast.  I chose bilateral since I'm also BRCA 1+.  The lump I felt was a small fold in the implant.. and I no longer can feel it.  I monitor very closely in the shower- as I was the one to find my first (original) invasive mass when it was 1.8 cm.

DX: 7/11 Triple Neg, GRADE III, STAGE IIa growth from STAGE Ia. Neo chemo didn't begin until 10/11. Taxol aborted due to mass growth. FEC x 6. BMX 3/19. pCR. Radiation not rec. BRCA 1+
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Jun 12, 2013 03:26AM sciencegal wrote:

Thank you for the advice!
Much appreciated. I will see how the follow-ups go.

My friends saved my hair through chemo with Penguin Cold Caps. Thank you capping crew!! Now NED 5 years out. Hang in there! Dx 10/19/2012, IDC, 6cm+, Stage IIB, Grade 3, 3/4 nodes, ER-/PR-, HER2+ Surgery 11/1/2012 Lymph node removal: Left, Sentinel Targeted Therapy 11/6/2012 Herceptin (trastuzumab) Chemotherapy 11/6/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 3/18/2013 Lymph node removal: Left, Underarm/Axillary Surgery 3/18/2013 Mastectomy: Left; Reconstruction (left): Tissue expander placement Surgery 5/22/2013 Reconstruction (left) Radiation Therapy 6/26/2013 Breast Surgery 9/25/2014 Reconstruction (left); Reconstruction (right)
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Jun 12, 2013 10:54AM 2nd_time_around wrote:

I had my 6-month check with BS this morning. According to her, no MRI's to replace mammos. However, need to speak with PS about MRI's to check silicone implants for leaks. As Adgirl put it, if I feel anything strange to call BS right away to see if further assessment required, otherwise, won't see her for 6 more months.

**AKA 2TA ** Any day I wake up, it's a good day. ~ ~ "You don't know strength until strength is the only choice you have." (Author unknown)..... Yes, this is my 2nd occurrence, not recurrence; 1st in 1996, 2nd in 2012, bilateral recon in 2012
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Jun 12, 2013 11:28AM Rowan47 wrote:

Hi ladies, just a quick question; I had BMX almost 2 years ago, but have had pain in ribs over past few months. Had xray and CT but nothing showed. For the past 2 weeks have had very sore collar bone, and now have swollen and tender lump on right clavicle, close to sternum. If still there next week will see BS. She mentioned maybe a bone scan when I saw her last...any ideas? Thanks!

Dx 2/16/2011, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/21/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 4/4/2011 Lumpectomy: Right Chemotherapy 4/25/2011 AT Surgery 8/17/2011 Mastectomy: Left, Right
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Jun 12, 2013 01:52PM - edited Jun 12, 2013 01:58PM by barbe1958

Rowan, very, very scary, eh??? I suffered from rib pain on and off after my double mast. At first we could blame it on where the drains sat for a couple of weeks and then were pulled out. Then, because I have arthritis in so many other areas of my body, I've been told it's "just" Costochondritis. Whatever it is, it's VERY painful when it "hits" me; so bad I can't even breath. It was first thought to be my heart (left side) so I did get a full work up. Consider that, please. 

Then, now almost 5 years out, I get rib pain on my right side - of course I thought swollen liver!!! It got so bad I'd have to raise my arm to be able to take a breath when I was sitting as that's when it seemed the worst. Got a torso CT that just showed nodes in my axillae (which I just had follow-up ultrasound today for) which will be re-checked in 6 months to see if they've grown.

STILL doesn't answer my rib pain at all!!! I didn't get rads, but have read that a lot of women suffer from rib pain after rads. You don't say if you had rads or recon (I didn't) so I'm not sure if something in your recon could be hurting you.

All-in-all a very scary feeling once you'd heard the word "cancer" and your name in the same sentence!! You are wise to be vigilent, you know your body best. I related my story to let you know that I've had rib pain for 5 years and it hasn't developed into bone mets or any other tumour. If you haven't had a bone scan yet, it would be a good idea. The problem is, if you get uptake (a reaction to the dye showing activity on the bone) you won't know if it's from arthritis or mets!!! I get HUGE areas of uptake and they just say they "think" it's not mets, and recommend an MRI which I can't have as I have a pace-maker. I was counting on the CT for some definitive answers, but the results of that said to have a bone scan!! So you can see there is a lot of gray area once diagnosed. Some women are told they have mets with a single spot on their skeleton. I'd demand a biopsy if possible. The drugs to help bone mets can actually damage your good bones.

As for the swollen clavicle I had that too!! In fact, the ultrasound was terrifying!!! The radiologist came sweeping into the room and said I had to get a biopsy NOW!! While trying to get a good spot she talked to the tech saying things like "Look, there's a bunch of them wrapped around her jugular, I can't use those." and "There's too many in that area." I was sure I was a goner!! Turns out my remaining bit of thyroid was covered with cysts (benign!) and I had to get it out. Scared the heck out of me while I waited for the biopsy attempt on the nodes in my neck, though!! The radiologist even said "If this comes back "inconclusive" please get it checked again. I'm not sure if I got a good enough sample!"

So I understand your fear and it's so very important to know your own body. Demand answers. If you are asked to wait-and-see after a scan it is just to see if anything grows. The limbo is truly hell. You are not alone. Please keep us posted on your journey here, you are in my thoughts.

Dx 12/10/2008, IDC: Papillary, Left, 1cm, Stage IB, 2/5 nodes, ER+/PR+, HER2- Surgery 12/15/2008 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Dx 2/4/2016, IDC: Papillary, Left, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/10/2016 Arimidex (anastrozole) Radiation Therapy 2/16/2016 Whole breast: Lymph nodes, Chest wall
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Jun 12, 2013 05:24PM Rowan47 wrote:

Thanks, Barbe. Gosh, you have been through a lot! I didn't have rads; went with BMX (no recon). I have been very healthy for past 18 months or so. My ribs have now settled, but my clavicle now has hard lump on it. It's actually really quite painful, and my shoulder and right arm also a bit sore, too. I know it's probably nothing, so not TOO worried. I am wondering if I perhaps damaged/fractured my collarbone at some stage, recently, and that is the pain? Anyway, have appt with BS in 2 weeks time. I will cancel appt if all settles down. Is there much involved with a bone scan?

Dx 2/16/2011, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/21/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 4/4/2011 Lumpectomy: Right Chemotherapy 4/25/2011 AT Surgery 8/17/2011 Mastectomy: Left, Right
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Jun 13, 2013 02:17AM sciencegal wrote:

Hi Rowan- Bone scans are painless- just a little injection of dye then you feel nothing. The easy part of all of this. It would be a good thing to do as it will set your mind at ease.
I sure hope you are fine. Likely just arthritis, it hits in really weird ways. Many of us have that, at a much younger age than expected, after all these treatments.
Good luck!!!!

My friends saved my hair through chemo with Penguin Cold Caps. Thank you capping crew!! Now NED 5 years out. Hang in there! Dx 10/19/2012, IDC, 6cm+, Stage IIB, Grade 3, 3/4 nodes, ER-/PR-, HER2+ Surgery 11/1/2012 Lymph node removal: Left, Sentinel Targeted Therapy 11/6/2012 Herceptin (trastuzumab) Chemotherapy 11/6/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 3/18/2013 Lymph node removal: Left, Underarm/Axillary Surgery 3/18/2013 Mastectomy: Left; Reconstruction (left): Tissue expander placement Surgery 5/22/2013 Reconstruction (left) Radiation Therapy 6/26/2013 Breast Surgery 9/25/2014 Reconstruction (left); Reconstruction (right)
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Jun 13, 2013 04:24AM barbe1958 wrote:

Rowan, wouldn't you know if you damaged your collarbone? My niece had to get an armsling when her's dislocated and it was quite painful, so I think you'd know. Nodes can get pretty pissed off when something in their "area" is out of whack. You need to get everything back in whack! See your BS anyway.

For a bone scan (NOT bone density!!) you get an injection of dye (sometimes they do a quick scan to make sure they hit a vein and the dye is moving) and then you wait a couple of hours for the dye to circulate your complete system. Then they do a much longer scan that can be over an hour long!! I've had shorter scans, but I like when it takes longer because as the tech says, "The machine moves on when it gets the information it needs." My last scan was 1 hour and 15 minutes! Of course I panicked, but all was okay, just the horrid arthritis!

Dx 12/10/2008, IDC: Papillary, Left, 1cm, Stage IB, 2/5 nodes, ER+/PR+, HER2- Surgery 12/15/2008 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Dx 2/4/2016, IDC: Papillary, Left, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/10/2016 Arimidex (anastrozole) Radiation Therapy 2/16/2016 Whole breast: Lymph nodes, Chest wall
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Jun 13, 2013 06:25PM Rowan47 wrote:

Thanks ladies, hadn't thought of arthritis! Have never had it before, but as you say, chemo does damage. Would arthritis account for the hard lumpy bone?

Dx 2/16/2011, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/21/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 4/4/2011 Lumpectomy: Right Chemotherapy 4/25/2011 AT Surgery 8/17/2011 Mastectomy: Left, Right

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