February 2012 MX

Galsal

thanks Nel.  will have to call them, the email contact fails.  LOL

Layla2525

Has anyone found it hard to keep the weight off since they took our estrogen away? And replaced it with Arimdx which lowers it. Plus the horrid hot flashes in the summery weather,88 here in FL .

Anyone get their implants yet? Did you go with saline or gel? My friend who got DD breast augment she had it 10 yr ago called me today, One ruptured andthe other one they think has a slow leak and she is gonna have them replaced with surg in May. I kept telling her you gotta replace them every 10 yrs and do MRI to see what they are doing in there. I wanna be a C,not as large as she went but bigger than I was,PS showed me an implant today,It looked like melted ice cream and had no projection at all!

Gina9195

I'm very glad to hear all my fellow February MXers are doing well, and moving forward. Theres nothing fun about any of this. I'm back to work this week after a set back with having 6 nodes removed from under my arm. All came back negative, so no chemo or rads, but I see my onc on Friday to start on tamoxifen. Has anyone had TE fills yet? I get my first this Friday. I'm having horrible discomfort from the node biopsy, my arm feels like fire is coursing through it. I have a painful tightness in my arm pit, and I think it might be cording. Has anyone experienced this? I am so ready for this discomfort to be over. I've always been a physical, active person, and I've been walking on a treadmill, but have been scared to run on it yet. I feel like I'm fragile. Anyone else feeling that way?

Bern25

Gina9195---I had some discomfort and tightness from the side with the nodes but the stretches the PT gave me have helped. I think mine was possible scar tissue starting so it actually felt good to stretch it out, is was that "hurt so good" feeling. I also get my first fill on Friday and next friday I see the Gyn to get my ovaries out the 10th, then I am not sure what med I will be on. I know I need to get back to my bike and yoga but I think it is the fatuige and the thought of being exhausted but I am going to give it a try today after my ultrasound.

mma59

Gina9195, I also had cording after the auxillary node dissection (removed 31 nodes total) and I think it was worse than the mastectomy.  I have been going to PT and it has helped tremendously but I still can feel it somewhat.  You really should try PT.  I have had two fills so far.  It is tight and uncomfortable but not that bad.  Good luck!

janiceg415

mma59

I am not sure why mine was detected this last time in October as my dcis was a dot on the screen, half the size of a grain of rice or even smaller (to the average person they would not be able to distinguish it at all). 

My best guess is that the facility that I have gone to year after year had just installed a new digital mammography machine so that with very dense breasts it was perhaps seen because of the machine or certain radiologistst that read mammograms are much better at seeing these microcalcifications than perhaps others are.  I just know that the digital mammogram did catch mine very early stage 0, and am thankful I did not miss my yearly exam. 

DebbieOS

Bern-  I know I'm a bit late in my posting, but CONGRATS on your onco score...that's GREAT!

mma59 and Janice-  I hear you re: the testing....my tumor was 2.9 and I am religious about getting my annual mammograms and they said that my tumor was "slow growing!"  So that means, to me, that it was probably there during my last mammogram and was missed. 

Layla-  You're experiencing weight gain ALREADY from the Arimidex?  Oh my goodness, that's scary...I start on it in a couple of days.  How long have you been on it now?  I guess by the time I'm done in five years, I'll need lap band surgery!!!!

Gina- re: scared to use the treadmill for running...I too am used to running a bit and now, only walk.  My implant still feels too heavy to "jog" it....had my mx/recon on 2/23...maybe in another month or two, it won't feel so heavy?  I hope so.  I know of others who had implants and run, however, they didn't have BR CA, so the implants didn't have to be beneath the muscle, as with BR CA implants.    Let me know, if and when, you start running again...I'd love to know and hear how you do with it.

beth1965

WOHOOOOOO-the trumpets are playing and there will be a drumroll today i am allowed to have a normal head to toe shower!!!!!!!!! They said my most recent wound they gave me is finally healed enough that they can cover it and i shower. It has been offically 57 days of no shower since my surgery. They have told me their reason for making me wait (torturing me) has been they were so concerned of another infection or complication that would prevent me from starting chemo. Apparently i am way behind schedule and was literally stuffed with cancer so waiting any longer for chemo is not an option for me. So i suppose it sort of makes sense in the - i want to stay alive aspect- but still has been frustrating.

They have said that they do have some ways to shower and bath with a picc line when i get it i just have to be very very careful. So i am thinking i will be able to at least clean all of me top to bottom exept my arm and i would be very happy with this. So i am  thinking this next part will not suck so much for me as the first.

Hugs to you all

beth1965

mma59- my tumor was over 9 cm and i had 17 nodes full of cancer i apparently have had this a long,long time. I have had mammograms every year for almost  10 years - i started young because my mom had lumps on a regular basis she had about 11 or 12 lumps now not one was ever cancer i got one and had cancer.  So that means they missed my cancer all these years including the most recent.I also had an ultrasound one month before my Diagnosis because even though the mammo was clear me and doc could feel lump. It came back clear absolutely nothing.

Finally it went to onc. and was mammo'd and ultrasounded by the best of the best they had and they found my big tumor. They said because i had ILC and dense breasts like you said its harder to see.All i think was REALLY are you serious you missed this huge tumor all these years!  And then i came on here and have met more woma n than i can count that have silmilar stories to me . I guess it happens all the time unfortunately never knew till came here. It is pretty scary

DebbieOS

Beth-  OVER 9 CM AND THEY JUST FOUND IT!!!!  Good grief!!!!!  My tumor had both ductal and lobular features....I wonder whether that's why it was difficult to spot on me too.  But....9 CM!!!!  I thought mine was big at almost 3.  Geesh.  Good news on the shower, however!

Gina9195

Bern25 and MMA59: I tried doing the stretches my BS gave me to do, and the stretching does help. I figured since I could get my arm over my head, I didn't need to stretch, but it does feel "so good" in a painful way. I will continue to do that and see if I can break up the cording on my own, otherwise I will see a PT. I don't have my new implant yet, just a TE on the right, but I'm still leary about the running. Although, I have an implant in my left breast still from a previous augmentation six years ago. And that has never stopped me from running or other intense exercising. They REALLY DO feel like your own after awhile. I have saline and am going to switch out my existing with silicone so that my breasts have the same type of implants and the same age.

Layla2525

DebbieOS,yes unfortunately,I have been on it 4 weeks,awful stuff. I had a list of side effects to take with me to the MO and I lost it! It also can cause confusion. wonderful pills. Gonna stick with tho cause I dont want anymore cancer. Growing new boobs overnight is so uncomfortable. I had my 2nd fill yesterday and the PS cut it back to 75cc after I told her about the 100cc on the first one causing me to miss 2 days of work due to pain & pressure.

I starting walking a lot which is only thing the PS approves of for exercise. OK by me,dont feel like exercising but doing it.  Took the dog with me today and went for 30 min. Havent heard a peep out of him since we got back. He is exhausted. He wanted to go so its his fault. Guess its too hot for him and his arthritis hurts. He went back in the kennel which gets most of the shade and 2 hrs of sun in the morning but he can go in his dog house to get outta the sun and when the summer comes we will cover that side of the kennel to keep the sun off him.

Anyone using black cohosh? I was thinkg of using Remifimen for these horrid hot flashes cause its 88 here in FL and the fiance wants to go to MX and LA this summer. Looking for a swimsuit and a cheap airline tkt.

beth1965

Debbie- its kinda unbeleivable they missed it isnt it. And yes with yours having lobular features maybe that is why it was hard to find. Because i keep being told ILC goes unnoticed all the time. I think 3 cm is way to big as well to have had difficulty seeing.  Are you like half and half IDC AND ILC.   How does that work -do they treat it the same as if it were one kind?  Jeez like one kind isnt enough you end up with two.-hugs to you    Do you get chemo or rads now ?

DebbieOS

Beth-  My tumor not only had IDC and ILC, but DCIS and LCIS features as well!!!!  They were all having a fricken party in there!!!!   They basically classified me as having mammary carcinoma, which is what they call it when there are too many different kinds in there.  But, they treat it just like IDC...which is MX and aromatase inhibitors, but no rads or chemo due to nothing in my lymph nodes (yay!) and a 14 oncotype score.  Anyway, it does make me wonder about the lobular factor and them not seeing it with both of us....and hugs to you too!

Layla- Wow, they put you on that just as fast as they could, eh?  As I think I mentioned earlier, I'm just about to start Arimidex on Monday (actually wanted to put me on it this last Monday, but my daughter was in town for a week and I didn't want to have any unexpected side effects happen to crop up immediately).  Oh, and re: the fill....my doc will only put in, at the max, 50cc at a time.  She had even said that she could do 35, if I chose, just to make it 100% comfortable.  I wonder whether your doc could do even less, if you chose...?

mma59

Gina9195, the stretches are good to do.  I do mine twice a day.  However, the therapist kind of holds my arm and stretches the cord or something and she can actually feel them pop.  After that I can really stretch much better.  I have only gone about 6 times and I would really recommend it if you can.

 Beth1965, did you ever think you would be so excited about a shower?  You will probably use up all your hot water!  Enjoy!  I can't believe a 9cm tumor could be missed!!!  WTF!  We really need some better testing or something!

My PS put in 200cc at time of surgery and the first fill was 60cc, the second was 80cc and I get my third fill next Monday.  It was tight but not too bad.

janiceg415

Beth1965  - good golly and joyful news for you Beth, I am so glad you are able to shower, you must be so relieved to say the least.  One should have to go thru what you have. 

I will be keeping you in thought and prayer.  You are one tough cookie, just know that you have many of the Fab Feb Females rooting for  you. 

Deborah2012

Beth dahlink- you've earned both the grunge crown and the tiara! I think you should ask your team of professionals if perhaps sandblasting might be an alternative if they cut off future showers for you?

I'm slack jawed reading about my fellow MX-BMXers stealth tumors going undetected even with regualr mammograms!

Mary625 so glad to get your rare post.  Welcome back. 

Loving those low oncotypeDX scores!  Happy feet, happy feet!

Deborah2012

Bern25

Just have to say...things really do get better...got my first fill without any problems in fact I may stay with this size. I got to drive today so I actually felt like I am back in the game and the best part is when they take the ovaries out my PS is going to try to coordinate to switch out the expanders to the permanents on the 10th.  That would be so nice not to have do that later. Then I will see the MO the 24th to start a treatment plan....was a good day...definitly happy dancing....so hang in there ladies in waiting good things are just ahead. The best part of this I think is I am finding happiness in the smallest things that go good.

BETH...so glad you can get in the shower....it must seem like you are on an island standing under a waterfall loving life.........

Next job is to hunt down women who have had ovaries out, how they felt menopause wise and the meds they are now taking....want to know what to expect...

Best to all...have to make dinner..

Hope everyone feels better today then they did yesterday 

barbiecorn

I had no reconstruction - BMX on 2/1 and I still am feeling my chest area tight and numb in some areas - it is so annoying how I cannot sleep on my stomach and have to move the pillows around - I thought after 8 weeks it would be better but it is still very uncomfortable - so ladies who have had reconstruction,I do sympathize with you cause I know how I feel and I've had no reconstruction.  My hat is off to you all!!!!!

Galsal

barbie, i'm with you!  2/10 bmx     don't know why i thought it would be better that quickly     no recon yet but working on it

barbiecorn

Galsal - I am sorry that you feel the same way but knowing that, it does make me feel that I am not alone and that it is normal.  Some days are better than others.  ((hugs)))

beth1965

Scary story---Black cloud is still following me-----they put my picc line in wrong and had about 6 cm pushed into my heart area that was not supposed to be there. I am still wondering if the woman that did it was not insane and trying to kill me..lol..after she put it in i said i did not feel well dizzy,blacking out,heart palpations etc...she x-rayed and said oops i put in too much then she pulled out an inch and said i would be fine now. I told her i still did not feel right she said i would soon. My husband said do you need to re-x-ray she said no. By the next day i thought i was going to die all symtoms had got worse i knew i was not okay. I was Scared. Ny nurse came by in the morning i ended up in emergency they pulled out 5 more cm  so in total 6 cm all stuffed into an area they never should have been causing all sorts of problems. My chest still hurts hopefully its just from them mucking about and not from damage. My husband is ready to try and sue them as they could have killed me but i will just be happy if i am okay to start chemo i dont care about anything else. 

DebbieOS- Wholly Crap you had one of everything! You are not kidding when you say they were having a party in there! It is good the treatment sounds standard and it is really good you have no node involvement. You would think with that many different kinds floating around they would have found everything right away

Barbiecorn- I had BMX feb.2   i have to agree with Galsal i also thought i would be better faster than i have been. I find the numbness is strange for me still cant get used to it. And some parts that are not numb are still sore or tight. I cant even imagine the discomfort and pain of getting reconstruction at the same time. Woman are so much stronger than people realize my hats off to the recon ladies too

Thank-you for all the shower well wishes everyone ...lol...Yes it was like standing under a waterfall Bern i never imagined water could feel so amazing !!! They said i am allowed to shower here and there with picc line i just have to do alot of precautions to make sure it does not get wet. And thanks so much for the crown deborah2012   its an honor

Hugs to all

DebbieOS

Ah, Beth...I'm so sorry that happened....as if you don't have enough to deal with already.  Come on!!!!      Hugs....

Nel138281

Oh Beth,

REALLY hasn't the black cloud decided you have had enough.  It has got to begin to get better and SOON.

Be well

Nel

Dixiemine30

Beth --  good grief...you poor thing.  I hope you get better soon.

Bern -- Happy Dance for you!!  How's the cease fire going? :-)  I've had a complete hysterectomy, 5 years ago. If no one else answers you about only ovaries I'll tell you the parts I can remember about mine...LOL

I'm Feb 2 and still sore too.  I've been able to sleep on my sides for a couple of weeks now...but it hurts most of the time.  I went for my 6th fill yesterday....and I am more sore than I've ever been :-(  He wants to put so more on the right side next week to "even things up"....then I have to wait 6 weeks for the exchange. I did really well for a couple of weeks and then started to be sore again.  I guess it just takes time but I want to be completely better now!!  Ugh!!!

DebbieOS

Hi Everyone,

Hey, just thought I'd share my VERY informal "research" that I've been doing with those who have had MX (not BMX)....it seems that everyone I know who are in the 40ish to 50ish age range who had mastectomies in the past and received a lift on their remaining good breast said that the lift only lasted 2-3 years!!!!  Something to ask your PS....  I know that this happened with my sis, and we're pretty similar, so I'm not gonna do it for only 2-3 yrs benefit.  BTW, afterwards the good boob fell back into the exact same spot it was earlier....

Deborah2012

Hi Fab Febbies,

I went ot my PS today. He said that I can get my squishies!  Yay!  I am scheduled for April 30th. 

I'm supposed to get the lift job on the "good"  boob while he's at it.  He said that he wanted to add a pig skin sling to my good boob because he was surprised at how much it had dropped in the ten years since I had my elective implant especially because it was the smallest implant possible.  So, DebbieOs, all I can say is "oink, oink" and  you must be on to something there!

Since my "good" boob is due for a change out anyway, maybe Dr. PS can get a "10" from the Eastern European judges on the clean and jerk lift of "Ms. Sags". 

Barbiecorn, so nice to see you post.  You've been missed. Can you believe all the twists and turns of our MX and BMXers??? 

Oh Beth, I'm still looking for the wand and the ruby slippers.  You so deserve some relief.

Hey get this.  I so loved my anesthesiologist for my MX, that I sent him a thank you note via the hospital after my surgery. I complimented him on how I didn't get nauseous after the surgery and how I felt he had truly heard my concerns, remembered each one, and resolved them. I wrote he that he had a thankless anonymous job- but a crucially important one.  Fast forward two months and now with an impending surgery for reconstruction- I asked my PS if I could request the same anesthesiologist?  PS said sure, if he's available on the 30th.  I hope so!

My Alloderm has been absorbed already by my skin and my MX healing is apparently  super-duper!  Naturally, I know that this lousy cancer always re-groups and surprises.  That is why I have considerable anxiety concerning my impending second opinion on 4-10-12.  

Gotta scoot, got home late from work and errands. I really will try to post the details of PS for the benefit of others.  There is useful information. 

 Thinking of all of you. Get your pillow fortresses ready and here's wishing peaceful, rejuvenating slumbers to all.

Deborah2012

janiceg415

Just a question for those who have gone the TE reconstructive route -  As you continue to get your fills every week or two, do they generally put the same amount in each time?  And do they tend to decrease or increase the amount as you progress to the final size?  Does it begin to hurt or be more painful towards the end of the expansion process?

I had 120 cc put in at time of surgery, and 3 fills of 70 ccs so far.  This last fill feels a bit more uncomfortable than previous.  Just wondering.

DebbieOS

Deborah- Pigskin?  You Babe!  I've never heard of that, but that is definitely interesting and something I'll ask my PS. 

Janice- I just had my first fill yesterday, so I unfortunately don't know yet...

Bern25

Janice...my first fill was great, I think it got a fold out of my right TE and made it feel better. Aside from accually feeling the extra weight it went ok. I am getting my last fill Friday so I can let you know then how it went. Best wishes....