Recurrence after bilat mastectomy?

MinusTwo

Simplicity - so sorry to hear that you're facing more biopsies. If you have someone to drive you, I'd probably opt for getting them both done at once. But you are right - don't let her push you. Hoping for B-9 Please do keep us in the loop.

Simplicity

Thanks MinusTwo. Not sure 🤔 Cutting there is wise. My radiated DIEP side. Skin is sooo thin there as is. Have to wait see what us shows. Really a complicated decision, as they always are...

SharonS

Glad to hear Jennyjdance good news.

I had my last cancer (3) in 2015. At that time I had a small raised area on the lateral side of my only remaining implant. They didn't think it was anything. Removed it and it was cancer. So when they went back in to get margins I had them take out implant also. No boobs is better than one boob. I had radiation after the surgery.

Since then I have been followed every 3 months by oncologist. She does blood work every 3 months and scans every 6 months. I am an athlete but have been having some strage SOB. They did a cardiology work up b/c I had adriamycin with my 2nd cancer. I scored A+ on echo and treadmill, but still SOB. Then I started getting a weird left ear pain.

Today we did usual chest, abdomen pelvis CT and also a brain scan. Will meet with oncology on Monday for results. A little worried b/c I just have not felt like myself for a while and the ear pain episodes also include me turning white as a sheet. If nothing not sure I will as accepting of the new normal. Running and exercise give me my sanity. I also teach Beat Cancer Boot Camp a couple times a week for all survivors. Being SOB really interferes with my life.

Hopefully nothing, but it helps to type it out

SharonS

Scans were AOK, but then I had the terrible ear, throat pain again last night. Husband witnessed and wanted to take me to ER. I just waited it out...

Kimstone

hi everyone I was diagnosed with breast cancer in the left breast 8 years ago. It was small and triple negative with a 97% growth rate. I had a lumpectomy one treatment of chemotherapy and radiation. 4 weeks ago I was diagnosed again with a lump that biopsied positive for triple-negative cancer again. I am now recovering from a bilateral mastectomy done last week. I am not a candidate for radiation nor am I a candidate for chemotherapy. I have been told by my Dr that it was found very small nothing in the lymph nodes and no treatment other than the mastectomy. I understand you were scared sometimes I think it's scarier the second time then it is the first. But I have been told I will probably not see this again and I have to move forward believing in that. I wish you all the best in your chemo treatment and your journey ahead.

kira1234

Kimstone you and I are in very similar situations. I'm not triple negative but it's my second diagnosis and I'm not elegable for radiation and oncologist isn't suggesting chemo. I'm looking at diet and exercise to help

slmdavidson

SharonS,

How are you???

RazzMATazz

I was just diagnosed at end of April with DCIS stage 0. I underwent double MX May 2. At post surgical appointment I was told I had made the right decision because the cancer was extensive. Surgeon said she had to consult with pathologist because it appeared the cancer might be invasive. She would let me know by the end of the week. I was told on Friday, the end of the week, that they had decided that the whole team would review my case on Tuesday. I was finally able to see my surgeon again on the Thursday after the review. I went from DCIS stage 0 grade 3 to IDC 1A grade 3. My second surgery was May 10. The surgeon reopened the previous incision and removed more tissue. On the next post-op visit she declared me cancer free with clear margins. This is the part where they lost me. How do they know I am cancer free? I am ER+ PR+ and am taking Anastrozole. No rads or chemo necessary, they tell me. They have already been wrong twice in my short journey. How do I trust them? So many here started very like myself and have had recurrence(which looks a lot more like missed) cancer is relatively short time. Most of the posts I have read had much more aggressive treatment then I have too. I am not begging for awful treatments but I do want to do all I can to try to assure longevity. In other words...I want to live. I have made an appointment with the PA from my MO's office to discuss geonomic testing and all these concerns. I really am worried about the caviler approach. I am seriously considering second opinion. I had carcinoma of the cervix when I was young also. All thoughts and suggestions so very very gratefully accepted!

DX 4/2017 DCIS Stage0 Grade 3

5/2/17 double MX expanders L and R. Lymph nodes x2 right side, clear. Post op appt. invasive carcinoma margins not clear.

5/9/17 DX IDC 1A Grade 3

5/14/17 return to surgery for additional surgery to obtain clear margins.

5/21/17 second post-op Margins clear, declared cancer free by surgeon.

One visit so far to MO.Started on anastrozole. Told no radiation or chemo needed.

Artista928

Stage I is always imo a very hard stage because most of the time, rads/chemo are optional if it's even offered at all. To do or not to do. And if you do, doesn't mean it won't come back or mets later on. If you haven't already, check out stage I forum to see what folks there are doing. But in the end, we all are making the best decision we can with our MOs. No point in second guessing because there is no guarantee whatever you do. Chemo and rads don't come without risks, se's (sometimes can be long lasting or permanent) and still it may not work for you. Each one of us has had to carefully consider it all and make the decision we feel most comfortable with without looking back. GL

kira1234

Razz the radiation treatments are many times not needed when a masectomy is chosen.

I had the oncotype test done to decide if I needed chemo. I was in the gray area which is why I had chemo. If you are concerned I would request that the oncologist do that test or the mammaprint test.

KathyL624

You need to do oncotype, unless your tumor was too small. I felt the same as you... would have done anything necessary. My oncotype report showed that the risks associated with chemo were greater than the benefits

KBeee

I would for sure get a second opinion. If you have an IDC component, they need to do oncotype testing. It will most likely say that chemo is unlikely, but there are times that it comes back higher than anticipated indicating that chemo is warranted. Call you MO this week to ask for the test and if he/she refuses then ask for a second opinion. It is sad to have to assert yourselves, but sometimes you have to. When I had my recurrence, Mayo assured me that chemo was unnecessary. My gut said this tumor was more aggressive than they were giving it credit. I had a local MO start following me and asked for Oncotype which came back at 40! Very high! Even the "best" can misjudge patients' tumors sometimes.

slmdavidson

RazzMATazz,

I agree with the comments above. You should see about getting Oncotype or Mammoprint done so you can evaluate the risk / benefit for chemo or targeted therapy. My PERSONAL opinion is: if they don't get clear margins the first time AND if you have multi-focal disease you definitely should do radiation. I would also ask about gene testing to see what,if any genetic mutations you have that would put you at higher risk for recurrence. This would be more than just BRCA 1/2. Do you know your Ki67?

Definitely get a second opinion. I don't know your age, but the younger you are, the more aggressive you should be. Recurrences and mets are coming later and later research is finding. Give yourself all of the opportunity to live a long healthy life following this diagnosis.

Laura

MinusTwo

I agree about oncotype. Also with an invasive component, I would request testing for HER2.

Gingernurse

my ki67 was 25%, is that bad? I'm so afraid of being too sick to work and I'm a month behind on my mortgage.

MinusTwo

Dona - are you looking at a recurrence? When was your first breast cancer?

Legomaster225

Razz, I am in a similar situation as far as radiation goes. I did not have a recurrence after BMX as both my cancer were recently discovered so don't quite fit in this thread though. They found cancer in my "good breast" at my BMX. RO said standard procedure if margins are clear and a mastectomy was done that no radiation is needed (or would be covered). I did have preadjuvent chemo already though because if my initial cancer. I will have radiation on that side even though the node that was positive last December was cancer free upon excision

SharonS

slmdavidson - I have an appt with an ENT tomorrow about the ear pain. Still SOB with activity and they will follow up on that next.

Thanks

RedIsTheBest

I have been told this week that I most likely have IBC. My grandfather and 2 great aunts died from this, so if course I'm scared. I'm scheduled with A radiologist tomorrow and a surgeon Monday.

My rash has almost went away after12 days but my skin feels and looks different. I'm having a very sharp pelvic pain that come and go tonight, I can't stay awake and my body aches like someone who has the flu.

Is this typical or related?

hopeful_36

Hi laides. I am here for support.

At age 32, I've had double mastectomy for DCIS. Only left breast was affected, so the right went for prevention. 4 years later, I've sense a tiny lump (of a size of a brown rice) just above the scar/implant. I had it checked (sonogram) in 3.5 weeks, and was recommended a biopsy for a suspicious mass. I postponed it for 2 months, as I wasn't emotionally ready to take it then (my father just passed away), and last week I've received the result of the biopsy stating its invasive ductal carcinoma..

Most terrifying part is them sending me to full body X-ray and bone scan to check that it's indeed just a recurrence from previous breast cancer, or if its coming from other parts..

I couldn't sleep last 3 nights.

Sitti

Hopeful_36,

I'm so sorry you find yourself here dealing with bc again. I can't speak to your specific situation but I know the waiting is extremely hard. How long before they send you for a body scan? Hopefully you won't have to wait long and you will get results quickly.

As far as getting some sleep (which you need), have you thought about asking your PCP for something to help you with the anxiety for this interim? I've seen that recommendation from other ladies and it seems that those who took the advice were helped as it did calm them a bit and enable them to sleep.

I'll keep you in my thoughts, please update when you can. I'm sure others will be along to encourage you. Sending you hugs.

Edited to say i think slmdavidson (started the thread) was in the same circumstances you are in now. I think she checks it periodically and responds.

MinusTwo

Hopeful - I had a BMX for DCIS with clean margins & no other treatment. Two years later I found a lump by my collar bone. Turned out to be a micromet but they called it a "recurrence" even though, like yours, it changed to IDC. The full body scan showed no other involvement. Because I was HER2+, I did chemo before ALND surgery, then more chemo & rads. Needless to say, it was not pleasant, but I came through OK and have been NED now for 3 years. I'm sorry you have to go through this again but hope you will have only the local involvement.

ChesterandRally

I was wondering if anyone had a bilateral mastectomy and has gotten a red rash. I think it is just a bug bite (I can see the penetration point) but it has caused some swelling in my scar tissue area. The redness is near my right armpit (I had my cancer only on the right side). Just wondering if anyone has had an experience like this.

Thanks

hopeful_36

MinusTwo, thank you for your response. This is uplifting.

I was dreading the scans, negotiating to have them afterwards. Mine too is right above the implant on the collarbone. Another alternative for the scans that I was told about is the bloodwork CTC that shows whether there are tumor or stem cell markers floating around.

@ Sitti, thank you for the words of support. I have a therapist/psychologist, a life couch and a group of friends for emotional support. But I live alone. So it sometimes gets lonely, and at night especially, I wish there were someone with me. But I'll be fine.

slmdavidson

Hi Hopeful,

Have you gotten any results yet? I also had a recurrence about 2 years after my bilateral mastectomy. I had it removed, had radiation and tamoxifen/armidmex and have been clear ever since. I hope that you get your answers soon and that it is just a local recurrence. Hate that you are going through this again, but it does happen more than we realize. Let me know if there is anything I can do for you. I am 8 years out now from my recurrence and all is fine. I know it's devastating news, but I am here to tell you that you can get through it!!

Chester and Rally,

I did not have any kind of rash. Has your rash disappeared? If it gets worse, I would definitely check into it further.

Laura

Traveltext

RedsisTheBest, how did you go with your IBC scare. It's interesting to me to hear about your grandfather having bc. What was his diagnosis?

hopeful_36

@slmdavidsob, it was so uplifting to read your post, thank you.

My surgery is scheduled for Oct 4. In going with a CTC bloodwork instead of the scans. My choice. And surgeon is ok with that. I'm taking it one step at a time. I might do the scans after he surgery. It's just too much to handle emotionally right now.

I'd love to talk to you over the phone, if it's on with you. I'll PMyou for contacts.

Candyapple17

ChesterandRally, I developed an odd splotchy looking rash on the incision site of both breasts last week and was concerned so PS who is doing the tissue expanders had me come in and to be on the safe side he put me back on antibiotics and I am using hydrocortisone as well.

Icandoallthings

Hi all! I m looking for some victory stories!

I am 29 years old, I was diagnosed with my first breast cancer when I was 28. I have been fighting it for the last 16 months, and just found out that it's back a few weeks ago. It's in the exact same spot exact same cancer. Last time I had a lumpectomy followed by TC chemotherapy and then radiation.

This time the doctor wants me to do ACT Chemo. I cannot do any more radiation because I just got finished doing it in November of 2016.I had my mastectomy a few weeks ago.

I have a 17 month old... and every time I talk to my doctors they use words like aggressive, and concerning. I'm just so over cancer. I don't want to do chemo twice in two years, but I have to, I have to live for my daughter. I'm just so nervous that it's going to come back somewhere else bigger and worse. Are there any stories of it coming back twice especially this quickly and living on a happy healthy life?

7of9

Hi Icandoallthings...

I was diagnosed stage 2b at 40 when my son was 2 1/2. Recurrence when he was 6 (3 1/2 yrs later) in axillary nodes (10/14) yikes. That was over a year and a half ago. Had failure on Tamoxifen, got my ovaries/uterus out with nodes. Did Taxoterable and radiation this time. NED last 2 scans. Had reconstruction last month as implant shifted badly (capsular contracture from rads) but am living the good life again! So I look at it as my son was 2 and is now 8. Worst case scenario if/when it comes back I should be able to claw out another 2 years minimum so that gets him to double digits. Just trying to get him old enough to drive as even with my insurance policy my husband will have to work (so my son can drive to practices, church, activities etc). When he goes off to college I'm celebrating and buying a HORSE!!! Meanwhile we've gone to Disney, Yosemite and bought a (used) boat. You'll never be happy you had this disease but you sure don't worry about the little things anymore and we know what it means to live for the moment. If I can do it...so can you! Also read the links from the stage 3 survivors 5, 10, 15 yrs out...it's WONDERFUL!