NOLA in September?
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It has been a long day of pre op today. Dr M got hung up in surgery today so I won't see her til tomorrow morning. No blue marks overnight. Had dinner a 4:30 and are settled in to the hotel. Shower tonight and then again at 4:30 am to arrive at Fairway by 5:45. I think I am just floating at neutral knowing I am in good hands. See y'all on the other side!
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Marty- I will be thinking about you. We are planning on visiting your husband before my pre-ops. Stop in and see me as you are pacing the floors. We may be on the same floor.
Maggie- I am so sorry you are going through this. I know you must be disappointed. You will be back and it will go great. Thinking of you.
Dorene- planning on seeing you Sunday at the Lodge.
Angie-see you tomorrow after my pre-ops sat Fairway.
My husband and I arrived at the Hope Lodge this evening. Went and got some groceries and am going to bed. It has been a long day. Good night all.0 -
Well thought I would share, I went for my first PetScan and CT Scan since being diagnose and treated for bc, received the call from the oncologist that I needed to go to my Breast Specialist that there is a suspicious spot in my left lymph node. Saw Dr. Lagarde (she's associated with NOLA) and had to have a ultra sound guided core bicospy. She said that she has seen this in a few women who had DIEP surgeries, that it is a BIG surgery, and not to worry until she says too. Should know something in about 10 days.
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Hi Guys!!!
I wanted to update and let future NOLA girls how pleased I am with the results. I had a double mx last year. I have only done stage 1.
I look amaaaaazing. I dont need stage 2. My tummy scar is big but I dont care about that. I am back at 100% and have full range of motion.
To those who worry about results: give it time
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Maggie again I am so sorry for this set back. You are continously in my thoughts and prayers!!
Good luck today Marty and Cherrie on Monday. I know this is has been a rollercoaster ride for you, but you are there now and will be on the other side very soon!!
Thank you so much to the ones who contacted me privately!! I REALLY appreciate it. I spoke with Laura yesterday and they are going to start me on a diuretic and potassium to take since it can lower your potassium levels and I also have to be careful with my blood pressure. I run on the low end so if I get light headed or dizzy, I will take it every other day. It's crazy how I am swelling and nothing helps. I told Laura that my thighs look like a HUGE bowl of jello that jiggle with every single movement!! I'd be fine with it (for now) if it didn't hurt so bad. She also the sagging in the butt area could be swelling too which is pushing everything down. I am going to TRY and be patient and not get ahead of myself, but know that another surgery just isn't in the cards for me. I am going to start this tomorrow morning and take the weekend to see how it makes me feel. I am little nervous since I haven't take anything like this before. (Fingers crossed)
Oh, I know a few have mentioned severe bloating. I have had bloating, but for some reason Tuesday and Wednesday of this week, I could have seriously pulled off being pregnant..OMG. It's a bit better now, but wow that took me by surprise a little, but I remembered others talking about on this thread. Thank you ladies!!!Just a sn: Dr. D was SO happy with his work on me that I had nurses coming up to my room to take a peek at me (his work) cause Dr. D was downstairs "bragging" saying how awesome I look and that I am going to be very happy!!! This sounds bad, but right now I feel my body is rejecting his amazing work. He told me at my post-op that I am one of the cases that he would REALLY love to see the end result. I really hope it works out and I don't disappoint him. It's amazing how we feel about these doctors and just the whole experience in general.
But, I'm gonna hold my chin up and think positive and hope and pray for the best!!!
I hate to talk about my issues when others have much more serious things going on, but no one really understands what we have been through or are going through. Thank you again to all of you for all your support & letting me vent no matter how trivial it sounds.
Hugs!!
Chelle
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I am up and almost back to where I was before the second surgery to remove the flap. My blood counts went low so DR M wants me here til they come back up. Taking the Loss quite well as i know that I can come back in March--already on the schedule for Mar 5th so now looking forward to getting strong and coming back for a GAP for the left. Thank you all for the great support
Maggie
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Chelle, It's never trivial. That why we are here for each other. It really helps to vent. I bet with some extra time you are going to look fabulous!
MartyJ, Thinking of you and wishing you a speedy recovery. Hugs
Cherrie, you are almost there. It's been a long road for you. You are in the best hands.
I ageee....the women on this thread are super amazing. Wouldn't be where I am without them. Thank you.
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MStrouble... I am concerned and baffled by what Dr Lagarde said... Why would a DIEp patient be more likely to have node activity after the fact?? I too had a trace amount in one node and then had chemo, with the hopes I am all good... I will say that when I saw my local BS yesterday, she said that by cutting from the nipple down and then in the fold, the BS can and sometimes does miss tissue in the armpit and upper chest area. And THAT is why she will monitor me every 6 months. I will say that my next surgery is using the underarm fat to rebuild my outer left breast, and so the incision will extend towards my back... I would hope they look closely at it to assure it is fat and not breast tissue... Oh my.. too much to think about
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bdavis...Dr. Lagarde did a ultra sound guided core biopsy...results by the way are BENIGN (just found out)...and as for the node "activity" that is why she didn't want me to worry about anything yet. I basically have a build up of fluid in the node no cancer activity, that's what she is seeing with women that have these BIG surgeries...sorry if I wasn't clear. Both my medical oncologist and Breast Specialist (Dr. Largarde, who is one of the best in the country and associated with NOLA) are a little gun shy with me and my cancer because of how large it in the end turned out to be.
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bdavis—I'm still on a every 3 months with both the Breast Specialist and Oncologist
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Pre-ops done!!! Visited Mags20487 at SCSH. Meeting Teddybear (Angie) for dinner.
Hydrating..........going for a DIEP and hoping for NO blood transfusion if possible. We'll see what Dr. Marga says. Thanks for your support.0 -
Maggie, good for you. You sound great. you have a resiliant spirit!
Marty, check in when you can. we're all thinking of you!
Here's next week! Good luck to Cherrie and Glosta... soon you will be on the other side....
Nov 12 - Cherrie - Stage 1, Bilateral mastectomy with DIEP/Stacked DIEP, Dr. M at Fairway hospital
Nov 13 - Glostagirl - SCSH for a Stage 1b (probably hip flap) with Dr. Massey.
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mstrouble, congratulations that your recent biopsy was benign. I'm glad to hear that you're being seen every 3 months. I plan to do the same. Do you get regular ultrasounds along with the physical exams of your breasts? Are you planning to get breast MRI's? I'm getting the impression that no one gets mammograms of their reconstructed flap breasts. But as Besty mentioned, there is still risk from the remaining breast tissue. Apparently breasts have axillary tails in the underarms. I have no idea if this is removed during a mastectomy at NOLA. I'm also curious about your comment about how large your cancer was... so your docs consider 2 cm to be really large?
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Jenlee- I wanted to be respectful of everyone's journey. I did find it encouraging and uplifting to hear of others getting back to being active before my Stage 1, so thank you for your perspective on this. Wow-Nordy skiing after Stage 1 that is pretty great to hear! While I'm working back to full workouts it has been great to get out and be active again. Can really lift the spirits.
I have been catching up on posts here, the women on this thread are so strong and amazing. Keep strong and know that you have great support here!!
Jane123- So happy to hear things worked out well for your Stage 2, and that the IV was less challenging this time.
I am attending a local FORCE meeting this Sunday for the first time. Looking forward to connecting with some women in my area.
Sending positive healing thoughts to those upcoming this next week!
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Jenlee-when dr. Lagarde first found it on ultrasound it only showed up as .5mm then I had the 3D MRI and PETScan that increased the size to 1.7 cm, then when I had the bilateral mastectomy it went to 2.1cm. I had extremely dense fibrotic cysts and it the cancer was pretty well hidden and it seem to grow every time they did something. Which is one reason everyone is a little gun shy and oncologist wanted more test when this suspicious spot was found. I have been getting ultrasounds of the breast for the last 11 years along with mammograms. Last year when I was diagnosed, the day I was going for the core biopsy I received a call from the imaging center telling all was clear with the mammogram. And I was told also that I wouldn't need to do mammograms just the ultra sounds.
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mstrouble, thanks so much for responding to my question. It's really none of my business, but I tend to look at the scenarios of others, compare to myself, and relate it back into how I should be more worried. So it's all about me! If your doctors thought your 2 cm was large, they would probably be horrified at my 4 cm. On the "what was your chemo" thread, I started second guessing my chemo protocol. When I saw someone who had pretty much an identical diagnosis as mine, I was really upset that she got rads and I didn't was never given the option of rads, just told that I didn't need it. She explained that her tumor was very close to the chest wall, which mine wasn't. Now I'm worrying about my underarms. Cancer has made me so fearful; I don't even know this paranoid person that I've become!!!:(
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Jenlee-that's one reason why I truly love Dr.lagarde, I'm like you I read everything and wonder and stress, like with this last go round. But when she walked and started explaining about the fluid, surgeries doing the biopsy and telling me not to worry until she says too, I calmed right. I tend to go to very dominate type doctors. DellaCroce and Lagarde work together and I found they have the most trusting personalities and my oncologist is just like Dr. Lagarde. So while I worry I a find it's a calmer worry if that makes any sense. And this last time I was more angry than anything. My husbands dad is in the hospital stage 4 lung cancer (never smoked go figure) that is now in his liver, they don't expect him to last much longer, I just felt I was adding to my husbands stress AGAIN.
I know my cancer has changed me so much, it was always a running joking with my family about my OCD (seriously I got Clorox wipes one year for Xmas and I was SO happy) now it's like whatever, and I found I just don't want to do anything, but be by myself. So I totally get where your coming from.0 -
Jenlee, I have the opposite reaction. When I see someone who had a large mass (mine was 5-6 CM) with clear nodes and no rads, I feel bad like, wow. She didn't have to have rads, why did they recommend it for me? Since early 2009 when I had rads, I've known women even with micromets in nodes who were told they could skip rads. I have issues with lyphedema (even though only three nodes were removed) and my RO feels it's partly attributable to the rads, at least he is honest. I hate it, it impacts me all the time and even restricts what I can do in Yoga, or else I get a trucal fair.
However, I must admit, as much as I hate the permanent side effects of rads for me, I also think to myself, well, I did everything they told me to do medically, so far, every single thing. So while there is some comfort in that, this far out, with my life back, and more prespective, I wonder if I was too aggressive. We can look at statistics but we really never know if a particular treatment really "worked" for us. I do know, however, that every medical treatment I've had was certainly harmful to my body.
After all my treatment was over, I started looking at what I could do to increase my odds. I read the "Anti-cancer" book (and many other sources) and now I focus on clean eating, exercise (which is REALLY important with continuing evidence that it's effective, even during treatment) and serenity practices to lower stress. There is no down side to these things! They are not harmful to your body, they are good for your body. Food for thought for you all going forward!
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Morning all --
Moved to Homewood Suites yesterday ... SCSH was jumpin'! Other than being constipated and my hands, lower legs and face swollen, not doing too badly. Had a bit of a scare on Thurs night, but all ended well.
Maggie-2, sorry to hear of the flap loss, but the good news is that there are still options and a whole team ready to take you there. Marty, sorry we haven't connected. I really think that everyone on here should carry a card to hang outside her door at SCSH with our handles on it. HIPPA prevents SCSH from posting names! But, I did meet a few ladies who weren't on the forum and the may be joining us soon.
Seem to be needing LOTS of sleep, so walk around and then rest. Heading home Tuesdaay Am after a post-op Monday afternoon with Dr. D.
As I heal, I send out the healing strength to others. Thanks for all of the PMs ... gives incredible strength to me. Thanks for all the support here ... stokes the healing for sure. Time for a nap! Later ...
M.
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Jenifer.. I think everyone wonders about their treatment...
Beverly... I had a micromet and was supposed to have rads with my lumpectomy, but when I opted for MX, 4 doctors told me I didn't need it. Which was great news to me, but of course I wonder if I have left myself open to a regional recurrance (like in the nodes).
I think its human nature to second guess even when we have followed all directives from our doctors, or in my case went above and beyond what was recommended.
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Maggie, I've suggested a set daily social time at SCSH so that more patients can meet other ladies on the same journey. I used to tape my real name and screen name on my door (made a sign at home before heading to NOLA) and met a lot of other gals by that means, but that doesn't help the women who don't know about this forum.
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On all of my trips, including 3 surgical trips and 2 consult trips, I have met many many women from this forum, just from knowing to look for them prior to my leaving, and I also met women who were not on this forum. In all I have met probably more than 20 women and I love the fact that I can put a face to a name... If you go to the hospital and just want to visit someone and don't know their name, you are out of luck (privacy issues), so I suggest pre-arranging your visits. And some of the women like Rhonda and Liz Anderson, I met at the hotel or a bar.. and I met others at restaurants like Leigh Ann and Cheryl (prior to her surgery)- most I met at the hospital.
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On way home after two long weeks...not the outcome we had hoped but keepin my chin up and going to get myself ready for March!!! Thank you all for yoir amazing support..makes it all easier to deal with..thanks cherrie for the visit..wishing you the very best this week
Maggie-20 -
I ran into that problem too during stage 1, but a few of us did schedule ahead of time and post our room numbers when we could.
For stage 2, I met two ladies in the waiting rooms of the center and the hospital. I REALLY enjoyed all of y'all :-)
Did anyone on here have to take a diuretic to help control swelling and did it work? How long till you saw results on your body? Just curious as I am not expecting immediate results but just curious if anyone else has done this.0 -
I began oral prednisone today to try to get rid of the contact dermatitis /rash I have around all my incisions...which are a lot: completely around my waist, under breasts, up to nipples, around nipples, and eight lipo openings. Oh boy does it itch, burn, feel warm, tingly and swollen, and worry me. My breasts are almost completely pink and rashy / kind of mottled. First tried Benadryl, then a big dose of Claritin and hydrocortisone cream, and now the steroids. Please someone tell me their bodies are (ridiculously) sensitive like mine & everything was okay.
On a postive note, I get to stop the antibiotics which may be contributing to this yuck because we pulled all three drains. Part of me thinks the rash is minor but part of me is struggling with this bump in the road. Peace to you all.
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Jane...this may or may not relate to your situation at all but I developed a similar rash, caused by antibacterial soap. As soon as I stopped using it the rash began to heal. My skin is very sensitive to laundry detergent and moisturizers with heavy fragrance, so I guess it shouldn't be a surprise that when the skin has been compromised by surgery it becomes even more sensitive.
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I became allergic to the neosporin. Used it for over a month without a problem and then developed an allergy to it.
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I have issues with lyphedema (even though only three nodes were removed) and my RO feels it's partly attributable to the rads, at least he is honest..>"
Springtime......
They dont know!
Honestly.I had 2 nodes removed and only LX/SNB . NO rads, but WAS recommended so I am probably more at risk for recurrence than you .
I had breast truncal, then left arm and hand, now somehow is in the right also ( WTH?!)
My husband had 24 nodes out for colon cancer ( stage 4) .He is fine . Oh, one node was cancerous btw.
Has NO issues at all. None. Nada. 3 yrs out. NED. No LE and like me, never got any instructions to avoid LE- none. That same year ,we tooka 4 hr flight.Nobody suggested compression. No matter. he is fine.
We were told he would always have to eat bananas , applesause, mild foods etc ...
Eats pizza, sausage grinders, chili, you name it. Its like he never had cancer at all,
Had the max rads you could get and went on to MGH to get proton rads as well.
He is fine.
CRAP SHOOT!
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Purple, very good point. I beieve it was Nordy who had an LE Therapist who had developed a sort of "risk factor list" because, as you point out, not everyone is the same risk for LE. I don't remember most of it, but a lot of the things rang true for me, like did you swell up during pregnancy. I did , and I tend to swell up in ankels, etc., if I sit too long or eat the wrong foods.
Thanks for your perspective...
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springtime
Would have been nice to have both the risk list as well as the prevention brochure prior to LX. A darn pamphlet seems in order for something so simple.
For me personally, I would NOT have had the LX.
Yep, I would have skipped it.And NOPE, sure not recommending that to ANYBODY else.
I have other illnesses that probably would have been at least as likely to cause my death and the BC could be found in my autopsy. I just didnt need another chronic condition!
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