Calling All with Tumors 6 cm +

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  • shells43
    shells43 Member Posts: 1,022
    edited April 2012

    Hey Big Sistas,

    For you all who are achey from the AIs, I thought I would share that Effexor has really helped me with the aches and pains. After 6 months on anastrazole, I could hardly get up after sitting for 10 or 15 minutes and my hands were stiff like claws (not good for a violinist). I was having horrible hot flashes and my 50-ish female NP put me on Effexor (37.5 mg). It helped with the hot flashes in 3 or 4 days, which was awesome. After about two weeks I suddenly realized that I felt REALLY good, the aches and pains were much better. I happened to look up effexor on Drugs.com and found out it is also give off label for fibromyalgia pain. I am taking it twice per day now and I would say both hot flashes and pain are reduced by about 90%. I have sung the praises of Effexor before, so forgive me if you think I'm a drug rep. I just think it could help, you might want to give it a try!

  • lago
    lago Member Posts: 17,186
    edited April 2012

    I've been on ESD (estrogen sucking drug) Anastrozole for 13+ months now. I stiffen up when I don't move but can walk most of it out in about a minute. I will admit I try to power walk 40 minutes a day AND strength train for 30-45 minutes a day. I have a feeling I would be much stiffer if I didn't.

    My hot flashes are so minor that I'm not even sure they are flashes. Usually between 2-5am when I've eaten something spicy that evening. Hard to believe I went through chemopause and having such an easy time with the flashes.

    ----------------------------------------

    Here's the update on me if any really wants to read all this:

    Saw my onc & NP yesterday. Seems one of those liver "lesions" has gone away. The other 2 they are assuming are cysts and unchanged but still too small to tell. My onc now wants me to have another scan in 6 months. WFT. I asked why so soon. The other was 1 year. She stated I was further out from treatment. Also now they can't give me the results over the phone or email. I have to come in due to HIPPA law (says the scheduler). At least I can do that on the same day.

    I was told my eyebrows thinning are not from the ESD (estrogen sucking drug: anastrozole). Not sure what to do about the nails that are still lifted either. Not sure if I'm going to see a dermatologist about these issues yet but my onc gave me the name of the super special dermatologist. I'm trying to cut down on doctors visits not add them.

    So my NP says I only have to keep the port 2 years not 3. She was going to check with my onc. Forgot to get that answer. I figure when I do the liver scan I can find out. The liver scan & visit will be 1 month shy of 2 years having the port. I might be getting deported sooner rather than later.

  • twistedsteel
    twistedsteel Member Posts: 156
    edited April 2012

    Xeloda is for...... I don't really know. MO said w locally advanced BC he wanted me on low dose while I had rads and then regular dose after that. I declined low dose during rads and glad I did bc rads fried me. Had to take a 9 day break to heal towards the end and ended up skipping the boosts.



    I think stage 3 gals may start having Xeloda recommended just in case. I know at least one stage 4 gal here was applauding my MO's decision to put me on now.



    I objected to the Xeloda but MO so earnestly wanted me on it that after reading about it I agreed to it. I am supposed to do 4 cycles. 14 days on, 7 days off. I am on day 3 of my 2nd cycle. I was at Disneyland during my 1st week off.



    It is thus far much easier to tolerate than any other chemo.

    The Estrogen Sucking Drug does suck and I admit every once in a while I skip a dose. Rebellion maybe. But then I read about a BC sis becoming an angel and I suck it up and stay on course.



    Estring has been a good thing for me and tests indicate it is not increasing the estrogen in my overall body. The vag dryness and urinary SE's were killing me. I joked that it felt like my vagina was going to dry up, fall out and blow away just from walking around. Estring put an end to that in less than a week.



  • Ossa
    Ossa Member Posts: 919
    edited April 2012
    Lago Why do you have to have your port in for two years. I was under the assumption it would come out as soon as treatment was over.. Done Herceptin in July so tought port would come out them
  • lago
    lago Member Posts: 17,186
    edited April 2012

    If I remember correctly my onc said I could have it removed but she likes to keep them in for a few more years (or maybe one more year). The reason is recurrence is highest the year after treatment stops as well as the first 3 years since diagnosis especially for us aggressive gals (like HER2+ and triple negative). Once they remove the port my treatment center will not place it back in the same place due to increased risk of blood clots.

    So once she said that I got paranoid and didn't want to jinx things. Nice thing is if I need blood drawn I can get it from there. Having nodes on both sides (10/4) and LE on one side no one is sticking my arms. Not sure how I'm going to get them to draw blood from my food in the future.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Iago: After 16 months of dealing with BC, I'll be finally finished the end of May. I had planned to get my port out ASAP. I hadn't heard that they can't put it back in the same place if I needed it later. Does that mean they can't put it on the same side or they can't put it in the the same location on the same side? Mine is on the right since I had a left-sided MX.

    I am glad your liver weirdness is going away. It sounds like you are taking terrific care of your health, so WTH is right. I've said a prayer for you that the rest of those spots will vanish too. My husband had a weird 1 cm spot on his lung that they wanted to watch for a year, and voila, it vanished. I hope yours do likewise.

  • lago
    lago Member Posts: 17,186
    edited April 2012

    Thanks windlass but these spots might just be something I've had since I was a kid. They may not need to go away… as long as they don't grow that's fine.  I've always taken pretty good care of myself except I did smoke at one time. I still have the sheet my onc gave me after surgery outlining what treatment I would get. At the top it says "Health=Excellent." I always found that funny but then I supposed I just had surgery so I was NED.

    I do believe you can have your port on the same side. There might even be a chance they can put it in the same place but the  risk of blood clots goes up… that's why my treatment center won't do it. So if you want it in your arm they can do that.

  • marina1963
    marina1963 Member Posts: 16
    edited April 2012

    I am one of those with a big tumor of 13 cm. I was diagnosed in March 2006

    a little over 6 years ago with locally advanced breast cancer,ER/PR-,HER2+++,

    Had lots of lymph nodes involved and still doing great,cancer free.

    I had neoadjuvat chemo(4 AC followed by 4 Taxotere/Herceptin and continued

    1 year of Herceptin),then surgery and radiation and later on DIEP reconstruction.

    The pathologic report showed no cancer in my breast or nodes after chemo.

    I had prophylactic mastectomy on my healthy breast ,bu this was only my choice.

    Marina

  • lago
    lago Member Posts: 17,186
    edited April 2012
    Marina That's awesome. 6  years!
  • bennetts1
    bennetts1 Member Posts: 440
    edited April 2012
    n June 2008, I was diagnosed with ER+/PR+ HER2- with an 8 cm tumor.  I had neoadjuvat chemo ...4 rounds A/C followed by 4 rounds of Taxol.  In November, I had a lumpectomy, with unclear margins, so a mastectomy followed in December.  I followed up my treatments with 38 radiation treatments.  I have completed my uni-DIEP reconstruction in Charleston by Dr. Marga Massey (she is totally awesome!!!)  Currently I am taking Aromasin, and cannot wait until my 5 year period is up!!!  I am proud to say, I am cancer-free today!!!!

    Sandy

  • Maghery721
    Maghery721 Member Posts: 68
    edited April 2012

    Hello ladies, I hope I am not intruding. May I join this party? LOL. :-)



    I haven't read too many of the comments on this thread but certainly will to catch up and get to know everybody. I did see one post that caught my eye from J-Bug discussing implants and wanted to add my recent personal experience. J-Bug's comment was that she was surprised to hear that one of the posters on this thread had implants and didn't think implants were an option. I'm assuming J-Bug meant that she didn't think implants were an option to those with large tumors (please correct me if this assumption is wrong, or if the implant discussion resulted in a satisfactory answer). I am referencing the implant subject because I did have implant reconstruction and my tumor was 10.5 cm. I do not believe the option of implants is based on tumor size, in the large majority of cases. I believe one of the many criteria it is based on is whether the surgeon can perform breast skin sparing surgery to preserve enough skin (as well as basing it on what the surgeon sees when he operates - my surgeon said he planned to do the implants but it all depended on what he saw when he opened me up - I do not know the details of that though, and as long as there was enough of a clean margin between the tumor and the skin and he was comfortable enough to spare the breast skin). The other option for implants is to have tissue expanders implanted - usually done when there is not enough skin to place the implant during surgery. One reason that implants might not be offered may be for those who will have to have radiation. For years they have not recommended having an implant if you will have to undergo radiation because of the effect the rads will have on the implant. Lately they (PS and RO) have been coming around to the idea of allowing implants prior to radiation but providing patient with information about the risks and possible harm that can occur to the implant. I've read in a number of posts about the fact that radiated skin is difficult to work with and that if I waited I may have not been able to get implants. I wanted implants rather than the flap surgery b/c my PS said that the most he could do for me is to make me a size B breast. That was not acceptable for me b/c I was a DD for most of my life. However, I got the implants with the knowledge that if the implants failed and/or I was unhappy with them, I had the option of the flap surgery (I hope to avoid this since it would be another surgery for me and it would be a very long and intricate surgery). Please note that all of this info is just my personal experience and from things I have read (I'm not good at remembering statistics and things like that) and I would be the first to admit if something I write is wrong and I welcome any suggestions.



    Look forward to "meeting" you all!



    Best regards, Cathy

  • J-Bug
    J-Bug Member Posts: 626
    edited April 2012

    We have a new surger of joiners! Welcome Marina1963, bennetts1 and Cigi56! 

    Cigi56: I think I was given a couple of reasons from my general surgeon and oncologist for not being able to get implants. The plastic surgeon agreed with these two men as well. The amount of skin available was one, radiation destroying the implants and radiation tightening up the skin a lot. I am in limbo right now with treatment recently finished, but not able to do reconstruction yet. I have been doing contract work all through this and need to save up some money to be able to take the time off or get a permanent hire and then see when it fits in with the company to be able to take the time off for surgery. Either way, I think I am stuck waiting for a bit. In researching the different methods, this is the one I wanted before the docs all gave their opinions.

    It's so nice to hear more survival stories. I am glad that you ladies are doing well. I will be taking my very first Tamoxifen pill tonight. I have been waiting on it to come in the mail for over two weeks now. Exciting event! 

  • Maghery721
    Maghery721 Member Posts: 68
    edited April 2012

    Thanks for the welcome J-Bug! We have similarities in our diagnosis and in our treatments. How did you do on chemo? I had it rough during the 4 AC treatments. Just so glad that chemo is over. Everything else has been a piece of cake. I would do 10 BMX surgeries before I would do chemo!



    I'm sorry to hear about your reconstruction limbo. It sucks to be stuck when all you want to do is finish up everything and put all of this stuff behind you. Good luck and I hope it works out for you soon.

  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited April 2012

    Bennts1



    I see we are both from TN. I am also considering Diep with Dr. Massey How long did it take you to recover from the first surgery?



    Lago, I hadn't heard the expression ESD, but I think it is an outstanding description. The stiffness grom AI's is lousy. My dr wants me on them for 10 years at least. I want to be around for 10 years so I will do it.

  • lago
    lago Member Posts: 17,186
    edited April 2012

    Elisabeth that's because I coined the term Estrogen Sucking Drug. (Guess you could call it a lagoism) My NP and my ophthalmologist were cracking up this week when I called it that. They never heard of it either. Keep moving. I do have stiffness but I'm sure it would be a lot worse if I didn't exercise and try to keep moving throughout the day. I had lunch with a friend yesterday. We sat for 3 1/2 hours. You should have seen us when we got up… but withing 30-60 seconds we were better.

    Cigi56 I have implants (tumor around 6-6.5cm including non-invasive in my former 34 A-B breasts). We assumed I would need  radiation but I was in a gray area and got a pass. My PS was willing to give it a try but there are complications that can happen if you get radiation. Many times the do a Latissimus Dorsi flap (taken from the back) to replace the damaged skin if the radiated skin isn't working/fails. 

    J-Bug I just saw my friends reconstruction by Dr. Massey*. I think she got one of the bilateral GAP flap procedures. We kid and call them her butt boobs. She had radiation and started with expanders but got some capsular contraction with the expanders. Instead of moving forward she decided on the butt boobs after researching and learning about these procedures…

    Some of us (like my friend and myself) don't have enough tissue to take it from the tummy or back. I know if I went in this direction I would have to have a stacked procedure because as much as I kid about having big thighs I'm pretty sure I wouldn't have enough for unstacked. Also remember that Dr. Massey* (as well as some other PS) do not like implants. They tend to only recommend them in cases where these other procedures aren't an option. Guess what I'm saying is all PS have their bias as what's the best procedure.

    BTW I'm very very happy with my implants. They look awesome but remember I didn't have radiation. I know I didn't want anymore scars so if the implants didn't work I probably would have gone without.


    *Check out Dr. Massey's site. She does an excellent job listing all the different reconstruction procedures except for Dr. Khouri method at the Miami Breast Center.

    Congratulations bennetts1 Here's to NED and ESD!

  • marina1963
    marina1963 Member Posts: 16
    edited April 2012

    Thank you ladies for welcoming me to this discussion thread.

    Lago,you will get to your 6 year anniversary before you know it !!!

  • lago
    lago Member Posts: 17,186
    edited April 2012

    Thanks Marina. I know I will. To be honest I'm not that worried about it. No reason to think I won't.

  • FightingforA
    FightingforA Member Posts: 62
    edited April 2012

    Hi Ladies. I've come to join the big girl club! Short bio, I was diagnosed in February. IDC, Lobular, and DCIS all present. The tumor size is estimated at 6cm. I started chemo on March 13th. I'm having A/Cx4 and then Taxoterex4. Surgery will be sometime in September, and the plan is bilateral mastectomy. I found my mass while nursing. I had a regular breast exam at the beginning of pregnany (nothing felt). By the time my baby was 5 months old...6cm tumor. We just assumed it was stubborn clogged ducts or mastitis, until I felt swelling under my arm. That started the tests. I'm trying to stay positive, but there are still days that my mind goes on that crazy train of dark thinking.

  • J-Bug
    J-Bug Member Posts: 626
    edited April 2012

    Welcome nsmolen. I am so sorry for your need to be here. What a precious little baby in your photo! It still amazes me that with all the treatment and experiences over the last year, that it hasn't even been a year yet.

    So far, I have found Tamoxifen to be no problem. My incision from my port removal got infected and my surgeon had to open it back up, so that is sore and I am finding that not doing the stretching that my PT gave me a few months ago was a huge mistake. I am working on getting that back on track.  

  • twistedsteel
    twistedsteel Member Posts: 156
    edited April 2012

    Wednesday is the one year mark of my diagnosis. I don't like the term cancerversery. I am still being treated. Tonight is my last dose of Xeloda for my second round. Then a week off and back on it for 2 more rounds of 14 days. If all goes according to plan, my treatment will end on June 3rd and I will become a maintenance patient. Fingers crossed.



    This has been the hardest year of my life that I can remember. Cancer and other things as well. I remain positive, upbeat and happy almost all the time. But I have moments of despair, fear, anger, bone deep fatigue, self pity, and ennui.



    Ennui is testing me now. I look forward to being unchained from the medical go round. I want to take life by the balls and live live live. But I am stymied as to what to do, where to go, who to do it with. I have the good fortune of being able to choose anything and anywhere within reason and I just don't know. I get a great idea and then I think of why that idea doesn't suit me. I sold my business so I don't have to go back to that.



    I feel like a wanna run but am stuck in deep mud. Anyone out there nearing the end of their acute treatment phase who struggle with this?

  • Springtime
    Springtime Member Posts: 5,355
    edited April 2012

    I had a large one too and so had bilateral mx and then radiation. Implants didn't work for me because of the rads. Often, Rads and implants don't mix well - casular contraction (is that how to spell it? something like this).  I had a stacked recon (both belly and butt fat flaps) at NOLA by Dr. DellaCroce. really nice whole body outcome. FYI, I know there was discussion above. 

  • J-Bug
    J-Bug Member Posts: 626
    edited May 2012

    I am officially scheduled for DIEP flap reconstruction on August 17th. I enjoy being flat-chested and not wearing a bra, but I do want to look better in my work clothing and not need the prostheses, so onward I move.

  • shells43
    shells43 Member Posts: 1,022
    edited June 2012

    Hey just checking in. J-Bug I'm thinking about that DIEP surgery too. Congrats on getting a date! That seems a long time off but I hope time flies for you.

  • J-Bug
    J-Bug Member Posts: 626
    edited June 2012

    It is a long time off but I wanted it scheduled for a time period in between classes that I am taking this summer and the beginning of the fall semester. It only leaves me with three weeks of recovery time, but I have a lot to look forward to with getting back into classes again in the fall. I will be too excited to not push forward some. I will not allow myself to move for the first three weeks though! : )

  • shells43
    shells43 Member Posts: 1,022
    edited June 2012

    Sounds like a good plan!

  • SweetCaroline2
    SweetCaroline2 Member Posts: 72
    edited June 2012

    Hi Ladies,

    J-Bug, thank you for starting this thread. It feels good to be able to share tips and encouragement with others who are facing or have been through a similar situation.  I was I started on neoadjuvant CT on March 22. Taxotere + Cytoxan x 6. My final treatment is next week, thank goodness! My tumor is lobular, 6.5cm x 2.5cm. With chemo, the tumor did shrink somewhat- it is now 5.5cm, not small enough for me to be able to have a lumpectomy instead of a mastectomy. I never felt a lump, but noticed a change in my breast shape and a noticed that a dimple had appeared on my areola. I have clinically negative lymph nodes- no enlarged lymph nodes can be felt under my arm, and none show up on the MRI either. My mastectomy with immediate reconstruction is scheduled for August 28. Because I am a DD and I will need radiation post-op, my PS recommended a latissimus dorsi flap with a TE. He is also going to try to do a nipple-sparing mastectomy. He warned me that there is a good chance that some or all of the nipple and areola might die due to lack of blood supply (because blood has to travel farther to the nipple in big breasts), but I feel it is worth a shot. Has anyone else been through this? I am having a sentinel node biopsy, but I refused an axial lymph node dissection (ALND) because from all the research I have done, I note that ALND is used for staging and does not seem to have any therapeutic value. Since I am already getting "the works"- everything that they can throw at me, I see no reason to risk LE in order to be accurately staged. 

    God Bless and Hugs to you all! 

  • J-Bug
    J-Bug Member Posts: 626
    edited July 2012

    SweetCaroline2: I just kept hearing from my docs that with doing radiation right after and as much tissue as they had to take for the tumor, that it was best to do reconstruction after radiation. Radiation can be bad for implants and really tightens the skin down. I had to do a lot of physical therapy after the bmx, and then after the rads too. However, mine was IDC and I see yours is ILC. That kept them from saving the nipple as well because it was in the ductal system. I don't claim to be any kind of expert on this, but I thought I would throw those thoughts out there so you know you are doing the right kind of reconstruction. I did bmx on Nov 9th and finished rads at the end of Feb, and I will do a DIEP flap on Aug 22nd. They wanted six months of recovery before reconstruction. I still have to do a lot of stretching and exercising my arms and shoulders to not tighten up, but it is getting much better than it was.

  • SweetCaroline2
    SweetCaroline2 Member Posts: 72
    edited July 2012

    J-Bug, thanks for sharing your experience and for reminding me that I need to bring up the issue of radiation effects on the implant. My PS hasn't voiced any concern about the radiation causing problems with the TE or the latissiumus dorsi flap (LD flap). I would prefer to have a DIEP flap, but am not a candidate for it because of previous abdominal surgery that left me with a big midline scar. I just had my first appointment with my radiation oncologist. He said that the flap should do fine with the radiation, but I couldn't get him to comment on the TE (not a good sign, I know). I think that there is about a 50% rate of contracture with implants after RT, and I am gambling that I will be lucky. Otherwise I will have to have the the implant removed and the other breast reduced from a DD cup to a B cup to match the reconstructed breast, since the LD flap without an implant can only give me about a B cup. The LD flap is supposed to provide a sling that helps to prevent extrusion of the implant and covers it to help protect it. 

    Good luck on your upcoming reconstruction-I hope it all goes smoothly. 

  • J-Bug
    J-Bug Member Posts: 626
    edited September 2012

    DIEP flap was two weeks ago. That is the most daunting surgery I have encountered! I had epiderul, oxygen, and catheter for four days. I had blisters all over and skin torn up from my adhesive sensitivites. I told them, but there are so many people on these teams. I ended up with a yeast infection and sore and open wounds across my butt. They thought that maybe I had been sitting on some wrinkles or my skin was breaking down from being in bed so long. My incisions have opened up a little and I have five separate leaks that I try to keep "plugged". My surgeon said it is more common on the radiated side to have this.

  • shells43
    shells43 Member Posts: 1,022
    edited September 2012

    Oh, Jbug, how are doing?? I keep thinking about DIEP so when you get through the worst of it I want to know how the results look. I'm sorry you are having a terrible time right now. It's not enough to have the surgery but then also have to deal with infections and blisters after warning them. That is just wrong. Did you have tissue taken from your butt? I don't have much to spare there. I thought it all comes from the tummy tuck area.

    I sure hope you heal quickly and like the first results. I will keep checking in on you gal. Take care!

    Shelley

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