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Calling all TNs

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Comments

  • slv58
    slv58 Member Posts: 486
    edited May 2015

    Cocker your correct, it was a cystoscope!

    Luv, I'm happy it sounds like your PCP has reassured you and is getting to the bottom of this!

    Hope everyone is doing well and to Canadian friends, enjoy the long week-end!

  • ninjamary
    ninjamary Member Posts: 67
    edited May 2015

    I feel like I'm the only one here who did not get a BMX. I do not carry the BRAC mutation/gene. Did your breast surgeons urge you to have a BMX or was that your decision? My BS thought a lumpectomy was fine. I'm wondering if I made the right decision.

  • eileenpg
    eileenpg Member Posts: 431
    edited May 2015

    ninjamary= I had a lumpectomy. My BS showed me there was no difference in the end results.  He felt I was a candidate for a lumpectomy only. My tumor was 6mm. I went with his decision because I decided I had to put my trust in the BS I picked. I asked him if I should get a bmx. He was very clear he did not think that was the right choice for me.

    Luv=Good luck=Wishing only the best for you. Easier said then done "try and not go to a bad place in your head. Turn off the tapes that are playing"

  • StefLove
    StefLove Member Posts: 201
    edited May 2015

    ninjamary, I only had a lumpectomy as well. This was before I knew I was triple neg though. Oriignaly the biopsy only told me that I had DCIS and it was minimally invasive. After the lumpectomy we realized it was IDC and triple neg. I'm waiting for the brca tests to come back and then depending on those results a BMX might be in the mix. I'm mentally preparing myself for it and just keep thinking..."hey free boob job!" *sigh*

  • megomendy
    megomendy Member Posts: 63
    edited May 2015


    Ninjamary, I had two lumpectomies in same breast a year apart. My doctor did not feel I needed a mastectomy and he recommended I go for a second opinon. I went to Sloan and the surgeon there agreed with him. Mine was stage 2A, as well.

  • megomendy
    megomendy Member Posts: 63
    edited May 2015


    Those of you who are taking Metformin, which doctor is prescribing it for you? My MO feels it is not proven yet, (but agrees it is promising) but I dont think she will prescribe it. Do I go to my PCP who probably has little knowledge of it? My GYN? And what materials/articles   should I bring with me or send to her to read.? 

    There is a study at Columbia where they are following women on Metformin and Omega-3 fatty acids for a year. I looked into it, but since I used up so many sick days last year, I dont feel I want to take off the days (prob 5-7 in a year) needed to go there for follow-ups.

  • avmom
    avmom Member Posts: 45
    edited May 2015

    Megomendy, my PCP prescribed Metformin for me. I checked with my MO, who is aware of the big trial (he knows one of the docs running one of the trial protocols in Vancouver), and he was fine with me taking it. Because Metformin is a long term thing, he thought I should discuss with my PCP, because I won't be followed by the cancer centre after treatment. I went to my PCP, and she wrote a scrip for the dosage in the trial,and I've been taking it since February, without any bad side effects. So far, so good

  • ninjamary
    ninjamary Member Posts: 67
    edited May 2015

    Thank you for your replies. I've been second guessing my decision lately. As much as I would like some new, smaller, perkier boobs I don't really want to go and have two separate surgeries. I think if they could remove the breast and insert a new one in one shot I might have done that.

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited May 2015

    I am so far behind on responding, - but i wish everyone WELL and a happy weekend!

    angel, - i was able to split up the A and C, - maybe that would help you, too?

    Luv, - i hope that you get info to put your mind at ease, as well as, of course, to feel better! I, too, often feel that i have a uti, and have had dozens of cultures, but it just seems that i have a very sensitive urinary tract =/ Many meds, and even an alcoholic drink, makes me feel very unconfortable. Of course, any gyno examine, does too. =(

    Welcome to our new members! You have joined a wonderful group!

    Shari, toby, cocker, greenae, and all - you are in my thoughts always!

    Hugs from nyc

  • Tobycc
    Tobycc Member Posts: 578
    edited May 2015

    Like others, I just had lumpectomy: but again, not aware it was TN: but I have not had any opinion from my MO that I needed a mastectomy--- I sometimes wonder also.

    I have been on metformin for years: 500 mg twice a day, to control diabetes which is well controlled. In fact my PCP said we could stop but I said no after I heard about this: not sure it is enough though. I will talk to my MO on 6/1 at my check up

    So glad it has been active on this thread: we are a special group, us TN gals! Hope everyone has a restful weekend

    Kath

  • placid44
    placid44 Member Posts: 179
    edited May 2015

    For those w lumpectomies, have your doctors recommended radiation? Sometimes it's mast OR lympectomy + radiation

  • meadow
    meadow Member Posts: 998
    edited May 2015

    NinjaMary, I had no choice, it is the protocol for IBC

  • MomMom
    MomMom Member Posts: 334
    edited May 2015


    Ninjamary,  There are many of us with lumpectomies, myself included.  My BS, MO & RO all told me the same thing - for me (stats below), studies have proven that survival rate is exactly the same lumpectomy v. mastectomy.  That said, all agreed that if I had tested BRACA +, I would have had a BMX and removal of ovaries.  And Yes, Radiation is recommended for LX only, although my RO told me that there is a newer study that indicates rads may be added for some with BMX.

  • placid44
    placid44 Member Posts: 179
    edited May 2015

    MomMom,

    Itwas recommended that I do mast + rads, and I did...

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited May 2015

    NinjaMary like Meadow I had no choice.  Because my cancer was widespread (no lump, just neo calcifications found on mammo)  I was told I was getting a left mastectomy but you will find more girls on here have had a lumpectomy and Eileen is right there is no proven results that suggest one is better than the other.  I also had radiation even with a mastectomy.  I had cancer in four nodes so all of them were taken hence my lymphoedema. My genetic testing came back as inconclusive so I decided not to have my right breast off although in hindsight I wish I had done this, mainly for comfort reasons regarding bra's.  I think we all second guess our treatment but I learn't  just to put my faith in my excellent surgeon otherwise I would have tormented myself to death.    

    In relation to Metformin, although I am not taking it a lot of the ladies are and I think if this makes you feel better and that you are doing something that makes you feel you will avoid recurrence then carry on taking it.

    nyc thank you for your good thoughts and the same right back at yer.

    Thinking of you ladies going through treatments and wish you minimum side effects.  Have a good weekend ladies and kick up those heels if you can.    

  • Tobycc
    Tobycc Member Posts: 578
    edited May 2015

    Chemo and rads after lumpectomy

    Happy weekend all!

    K

  • adagio
    adagio Member Posts: 713
    edited May 2015

    Chemo and radiation after lumpectomy for me also!

  • little-k
    little-k Member Posts: 6
    edited May 2015

    I had lumpectomy and will have radiationonce chemo is done.

  • StefLove
    StefLove Member Posts: 201
    edited May 2015

    chemo and rads after my lumpectomy too!

  • JAN69
    JAN69 Member Posts: 731
    edited May 2015

    Modified radical mastectomy, chemo, radiation, prophylactic simple mastectomy. I hated being one-sided and I live my life as a "flat-top." No bras, no forms, well, no fun either.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited May 2015

    Jan I too hate being lop sided and wish I had, had  a bilateral but two late now, or at least I hope it is!!!


     

  • SizzleStitch
    SizzleStitch Member Posts: 17
    edited May 2015

    Being older, I chose BMX with immediate reconstruction. I was able to have nipple sparing and just had to fill in the space. I didn't need expanders. It took the largest silicon they had, ha ha. I had to repeatedly tell them I was happy with my sagging old ones so didn't need to look like a model when done, just as normal as possible. It was done all at once. I didn't want to go through it again down the road. I also didn't want to do many rounds of radiation. My MO and PS did tell me they thought it was a good decision... So far, so good :-/.

    I am also type two diabetic and take 4 Metformin ER's every day. I have been so afraid to google or read anything... I will have to check that study out though.. Thanks.


  • jlstacey
    jlstacey Member Posts: 117
    edited May 2015

    I have small breasts and was given the option of lumpectomy, UMX or BMX. My BS did say that the LX was probably not my best option cosmetically due to the size of the tumor in relation to the size of the breast. I have chosen BMX for peace of mind. I ruled out lumpectomy at the start. I know that I will think about getting a new primary cancer every day if I go with a UMX. My MO supports this and helped me come to this decision. I have had nobody question it, but they have all told me that clinically the outcome is not improved with a BMX over LX or UMX. I see too many people on here who have gotten a new primary cancer in their other breast

  • BanR
    BanR Member Posts: 238
    edited May 2015

    Just read all the posts. Happy news.. Disturbing news ..all combined.

    Shari, you are in my thoughts dear. A strong feeling that u will come out of it.

    Megamandy, cocker n others.. No metformin for me too.

    Cocker, I agree with u, reg the stress component n tnbc. Cumulative exposure to stress is a big cause of lifestyle diseases ..cancer being one of them

    There is a small query... Would you girls have any idea about aurora cancer centre, Milwaukee, Wisconsin. Wanted some reviews.

    Much love to u all..


  • slv58
    slv58 Member Posts: 486
    edited May 2015

    Thank you AnotherNYCgirl and BanR for your thoughts! The combined support from everyone gives me strength!

    Boy I'm getting tired of this neuropathy, my MO is watching me closely with this chemo as she knows I already had a big of neuropathy and this chemo I'm on now can add to it, but honestly if this chemo can get me NED I don't care about tingly fingertips- so I'm not mentioning it for fear that dosage will be reduced.

    I hope everyone is well, I do read daily and hold everyone in my heart


  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited May 2015

    Shari, I agree with you in regards to the neuropathy. You got this sis!! XOXO!!

  • t100angel
    t100angel Member Posts: 22
    edited May 2015

    UPDATE: I had my EKG, but of course the technician can't tell me anything other than confirming the anatomy that was on the screen, and what he was measuring.

    The port surgery yesterday went well. They placed it on the right side and into my jugular vein. It's very tender, and I had to remove the covering over the port incision as I was reacting to the adhesive. It's very swollen and tender where that was. I took pictures of it after I removed it to show my doctors so they don't use that bandage again.

    I did NOT have a sentinel node biopsy as the other node biopsy came back clear. I'm am so super excited to know that my body has done a great job of keeping the cancer within my breast tissue. I start chemo on Wednesday, so I have a few days to heal before treatment.

    My last workday is next Tuesday. What a change this year has presented to me.


  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited May 2015

    t100angel, take it easy the next few days since you're so sore. It should subside in a couple of days. I was pretty sore after getting mine so I took Advil for a few days. I'll be praying for you and thinking of you on Wednesday, as you start chemo. Try not to worry and stay on top of the meds they give you and you'll do fine. HUGS!!

  • JJ62
    JJ62 Member Posts: 36
    edited May 2015

    t100angel this may work to get you to a link re adhesive issues: Forum: Surgery - Before, During, and After : Adhesive TAPE

    If it doesn't work search Adhesive tape allergies. Irritant contact dematitis is just one more complication you don't need. Adhesives and chlorhexidine both cause issues.

    You can do this! Hang in there!


  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited May 2015


    Angel it's the latex in the adhesive tape.  I am the same, come up in big red welts even with a small band aid.  When I had my surgery I had to be the first one on the theatre list because they needed to scrub the theatre after I left so that every other surgery was safe to do as latex can affect some people having surgery.  The plus side was I got my surgery first in the morning instead of having more time to stress out it.