Recurrence after bilat mastectomy?

barbe1958

GREAT first post Karen!! You have every right to be scared, but you know that there ARE other things the lump could be. I had a couple of scares myself. They turned out to be fat deposits and/or necrosis. Very common, especially along the scar line. You will feel better once you know for sure, but if you're like the rest of us, you'll still wonder....

Hang in there sweetie! Please let us know what the results of any testing is.

sfokld

Thanks so much barbe1958 for the encouragement and good news that you have had this, and it was NOT cancer!  I am hoping and praying it is something else.  I really appreciate having a place to "get this off my chest,"  so to speak!  

 I just watched a very funny youtube video by a lady going through breast cancer that started her stand up comedy routine about breast cancer with that phase. It was just what I needed to laugh at this crazy thing we are all facing in our lives. http://www.youtube.com/watch?feature=player_embedded&v=5CPR_CXenzY

 

Thanks so much!

 

Karen 

AnnetteS

Karen, I have a similar situation, with bmx, chemo and 5 months of tamox I now have a lump.  I had an ultrasound and was told it was just a cyst.  I have ovarian cysts, so I am aware that those things happen and are not bad news.  Because of my history with two cancers already, they are going to aspirate and biopsy if they find anything in the cyst, but are sure it is nothing to worry about.

Here's to good thoughts that yours is nothing to worry about

mumito

I have a couple of tender lumps near my scar line and they all were clear on the ultrasound.((hugs))

Survivor2Be

Ladies,

I was diagnosed with TNBC in 9/10, had neoadjuvant chemo, followed by surgery (BMX, ALND & TE) and then radiation.  I was on treatment 19 of 28 and was diagnosed with a chest wall recurrence.  Has anyone heard of it coming back that quickly?  Any thought to HOW BC can grow while being irradiated??? 

brazos58

Bump!

VC1

Hi All

 I have had a recurrance after my mastectomy for a second primary.  It started as a small ulcer that spread rapidly all over the area where I had radiotherapy.  Was told that it is not curable due to the size invloved.  Have tried Carboplatin which didnt work then moved onto Gemzar.  Have been on Gemzar since March and the wound is now 90% healed and still improving.  If it keeps working like this I dont know what my onc will do as there was no sign of spread during my last scans (in Feb).  Hoping that it improves to a point where they can operate, fingers crossed

Deep81

Hey there, I have just been diagnosed with Breast Mets to the lung and I had a bilateral mast with tissue expanders in July 2011. My pathology came back clear so i though Yipee!

Unlike you I had the lumpectory, the chemo and rads but unfortunately one cell got away.

Now I am on chemo again and its toxic but if it keeps me alive I cant complain! 

Survivor2Be

I keep hearing about people that had clear scans and within 3 months metastatic disease.  How do you all deal with the fear/worry that something major will happen between MD visits?  How do you plan a future?

aleclaire

I am in the exact same situation. Bitat mas for dcis in left breast two years ago.  found lump in left breast.  biopsy confimrmed cancer.  Pet and bone scan were clear thank god Going for surgery on Oct. 24th to remove lump.  Appt Nov 1 to discuss path and treatment Can u update me on your treatment plan and how things are going.

If radiation was necessary did the implant need to be removed and was that done at that time of surgery

this message goes out to slmdavidson or anyone else in our situation

barbe1958

Survivor, you plan a future just as much as if you never had a cancer diagnosis. With hope and promise. Sometimes you will slip into despair of every feeling safe again. We have lost that innocence that the rest of the world has. We don't skip desert anymore!!!

Survivor2Be

Aleclaire

I was 5 months out from bilat mastectomy.  I had to wait awhile to start radiation (get ALND, tissue expanders and fill them), so I was in the middle of my radiation when I felt my lump.  I had already done neoadjuvant chemo before surgery.  Soooo, my treatment plan is that I removed the lump, my radiation has been increased about 20% more than previously arranged and I meet with a TN specialist to determine what, if any, future chemo.  I had a clear CT, was unable to do an MRI due to the expanders (too much artifact) and I will see about a PET scan.  Scares the s**t out of me!  But, how that I've had a week or so to process, I'm trying to move in the direction that barbe1958 says: live your life as you would without cancer - just savor each and every moment with more gusto!

barbe1958

Andrea, you don't have to aim for 'more gusto', that can get exhausting at times and give you the false feeling that there is an 'end' somewhere. Just live with the knowledge that you may be one of the unlucky few that can see the bullet that will kill them. Diabetics, heart diseased and other life-threatening diseased patients live like that all the time. We don't have to be 'rah, rah, boom, boom' which tires our friends out - we just have to be. To live. Not just exist.

hallsnj5

Barb- I wish there was a Like button on here. Well said!!

sfokld

Dear All,

 Hi, this is Karen.  I posted a few weeks ago.  I got a biopsy of my lump, and found out on Monday that there is invasive lobular carcinoma in it, one of the 2 kinds of cancer I was found to have last year.  The lump is 2 cm from my left mastectomy scar.  This was the bad news I did not want, and am going to have surgery in the next week, then radiation.  I am demanding they do new scans (bone, CT PET etc) of me.  Last year my scans were clear.  I did chemo after the left mastectomy last year, and then tamoxifen.  I am terrified, but am being tough and just need to know what is going on in there!  They are going to take as much tissue and skin as possible, but are leaving in my implant and will do radiation later.  

 Today is my youngest's 4th birthday.  He is at school at the moment, and I am making this day all about him, but hope to have many more to celebrate with him.  I want to live, and be free of this cancer for my kids and my husband, even more than myself.  I cannot imagine how they will function without me here.  I have read that lobular is slower to metastasize than ductal, and I am hoping and praying that this has not metastasized. ( I had both last year, but they only knew about the ductal before my mastectomy, and finding out about the lobular was a big shock on the patho report that no one expected.)  

 I actually will have a celebration, and much joy if I find out that I only need surgery and radiation, and if the scans are clear.  I could care less right now about the suffering from surgery, radiation etc.  I only want some good news for once that it has not spread.  How did this evil tumor survive  surgery, chemo and meds?  I ended chemo a year ago.  That scares me that it is so persistent and resistant to everything.  I will be upset that I did everything I was told to do, and it was not enough last year.  I really am hoping for a blessing and a miracle that this lobular cancer has only stuck around the tumor area, and not traveled elsewhere.  It is in the same place nder the skin as where the original cancer areas were found (both ductal and lobular.) 

I am scared.  I am not sure what to think if I find out it has metatasized, since chemo obviously did not work on this cancer.  Alecare, thanks for your post, and good luck with your surgery!  I will have mine the 19th or the 26th. I will be praying for you ,and everyone else too. 

Thank you to all that are so strong ,and have posted and are goin through much more than I am with mets, etc.  I really appreciate your support and comments.

Karen 

sundermom

Karen,



I am so sorry you are having to dealing with this all again. it just seems incomprehensible to me that something could survive chemo! If you don't mind my asking ....did you have rads after your MX? Our stats are similar and I just finished whole breast, axillary, clavicle and boosts to the scar line. My MO said that 2 positive nodes put me into the gray area, but the RO said we should go for it. FWIW I found rads pretty easy to tolerate, but it did screw up my reconstruction on that side. I just had a revision surgery 2 weeks ago. I can totally relate to your comment about being here for your kids. I have 5 children and my youngest will turn 4 in a few weeks. It's tough . . . but they were a huge source of motivation for me as I plodded along through chemo and everything else. Try to enjoy the birthday, today. I always get teary when we sing and they blow out the candles

slmdavidson

@ Karen, hang in there girl.  There is a good chance that little bugger hasn't gone anywhere.  I would ask about the Tamox metabolism test...it could be that you are one of those that Tamox doesn't work, because you don't metabolize the drug. Praying you only have to do surgery and radiation. 

 @ Aleclaire - how are you doing?  Good to talk to you the other day.  Were you able to speak to your Onc and get any answers yet? 

Laura

dswope

Hi all,

First I want to tell Karen that I am pulling for her.  This just never seems to go away altogether.  Good luck.  And, I'd like to thank those of you in on this discussion.  It always helps to read of others experiences.

I haven't been on these boards for a year or so.  I stopped because I didn't think I was really helping because I was only Stage 1, and had no real knowledge of this cancer.  Well, I'm back.....been reading this board because I think I found a lump along my scar line just before my underarm area.  I noticed it about a month ago.  What I am unsure of is what a lump actually feels like.  Mine feels like a thick gel like growth.  It is bigger than the other side and starting to hurt a bit.  Also the area under my arm feels fatter....like it needs more room.   Does this make any since?

I have no insurance at this time (another dislocated worker!) so I'm just trying to get as much info as I can.

Thanks in advance for your replies, if there are any.

hollyann

I haven't been to this board in a while.....I have my mammo on Monday and I have a thickening on the top of my right boob...The one that had cancer in it....Well I had a bilat with TRAM recons so I should be safe, right?...........It is sore though and it is on my clavical........Doing this mammo solo so wish me luck......Oh and to make matters worse I found out I have plantar fibromatosis, but according to the web it is benign........go figure........Cancer the disease that just keeps on giving.......Ih and please keep my sister Pauline in your prayers.....She has 2 lumps in her breast and is also having internal bleeding issues,,,,,,,

o2bhealthy

((((Hollyann)))) praying for b9 news...nice to see you back on bc.org!

barbe1958

Lucy, prayers out to Pauline! Keep us posted sweetie - and for your issues, too.

Deb, your issue sounds more like lymphadema! It can occur at any time after surgery and your description of feeling "fatter" is bang on! A year ago my right knee felt fat, like it didn't have enough skin for me to walk properly and stretch the back of my leg out. Very weird feeling. When I got home and took my pants off my knee was almost 4 times it's size! I had to have it drained. Just mentioning that as the feeling WAS a swelling.

Karen, breast cancer, on average, doubles in size every 180 days. That little bugger could be a different hormonal type than the part that got tested and responded to chemo. This bit just sat there and laughed, and doubled in size every 180 days until it got big enough to feel. So, it might not be 'new' but just big enough now to treat. Still a very big SCARY deal!! I do not deny that, but ILC is rare, so to get it twice in one breast would beat the odds!

brazos58

Hi Everyone

Prayers for all!

 I am keeping you all company. I did have a mass in my armpit w/i a year of my BMX and it was B9.  As soon as I found it I packed a bag, jumped in my Mustang and drove over an hour to freak with my BestFriend,

Now I have a thickening in my incision, a move- able gel like area ./ a thickening near the scar from the armpit mass/ and a lymph node above my clavicle....that I found the first time i did manual lymphatic drainage on my self.

I go to see Surgical Onc on Monday. I am hoping I am not sitting in the parking lot afterward crying again.

This is such a Lesson on how to live.. life with Fear..... i try to give it only so much attention, then I run like hell, play harder and spend alot more time doing whats important.

Love and Strength to All

Good Vibes and Good News all Around Too

oxoxox

Brazos

hallsnj5

Lots of things going on in the coming week. Hope and prayers to all as you proceed this week. I too am waiting on skin punch biopsy results this week.

Lisa

brazos58

Evening Everyone

I am back from my 3 month check up. Surgical Onc did find the supraclavicular lymphnode/ behind the collar bone. Wants to do an US on the Lymphnode Chain in that area. Anyone else having to deal with this?

This is on my good side......

So far 3 recur scares and I am supposed to be at 1-2% chance...in past 11 months.

Blessings

brazos

brazos58

Bumping for any Help

Anyone have 2cm Lymphnodes show up on US, near carotid and internal jugular???? on thery're good side/ and other cervical lymphnodes.???????

lollypop59

hi nichola i am pretty new to the site i was diagnosed sept 2010, with ibc i had chemo first , then surgery mx and reconstruction, was cancer free then i also had rads for three weeks after. then three weeks ago i found four nodules  in skin on same breast, now had my silicone taken had the nodules removed and now waitng to see if in need further treatment, also i have been on herection since dec 2010.

barbe1958

brazos, I'm going through exactly the same thing except they tried an FNA in September and it came back as "sub-optimal sample with no cancer cells evident". I was to get it re-done in 2 months, so will be doing it all again in November. I don't want to go the FNA way again as the biggest node is jammed against my jugular, too. I'd rather an excisional....but I know that's a dramatic move. What's your next move?

brazos58

Hi Barb

Hugs! This is a very scary leg in this journey. I am waiting on the US I had done and see what my Surg Onc thinks. I agree with you about not going the FNA route....can miss things on that...at the same time this can place you with an excisional biopsy in a very dangerous area with the carotid artery and internal jugular vein. I don't know if I could even go there as a RN.....

I am a sitting duck and just hoping this is at best..... nothing but watch? or MRI's and or PETS vs a whole second opinion.

Feel free to PM me for sanity!

Cherrie

It is hard to hear that some of you had a recurrence after a BMX.  I am in the planning stages of getting this procedure.  I am 9 years out for BC and just had a excisional biopsy which shows ADH.  I had never heard of that.  I was thinking that my odds would be next to nothing if I chose this option. (1-2%) This is scary to hear and I am so sorry some of you have had to deal with this.  Now I really understand the meaning of being a fighter.  You are real life warriors. 

barbe1958

Cherrie, having a BMX (like I did) doesn't decrease the mortality rate of bc, but it does change the treatment plan to what some consider easier. So, you miss a couple of harsh treatments, but you'll progress or not at the same rate as if you'd kept your breast(s). I did it to avoid the fear of waiting for the other breast to become cancerous. And I'm glad I did as my "good" breast had ADH in it!!