NOLA in September?
Comments
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Cherrie, Happy Boobsday (plural for both). You have been an inspiration to me since I started my journey not long ago, and you continue to be.
Momof5, we definitely will get together. I didn't stay at the Hope Lodge last time, but may consider it this time. If not, I'm sure we can still arrange some time together.0 -
mom- if you have a date, call the center and remind them that you want the HopeLodge. I filled out paper work and they sent it in and arranged it for me. Getting a room with a hospital bed is a GREAT idea. Wish I had known that. It really is a nice place, but rent a car so you can do things to get out.
Zenful- I am honored to be an inspiration to you. It sounds like you are doing great. Yay!!!!
I love boobsday!!!!!!0 -
Pat - good advice on the hospital bed!! I will be sure to ask. I am happy that they let you pull the drains yourself as opposed to having to arrange to visit and GP or something to have them pulled. This will be my third surgery that required drains, so DH and I should be pros at this
I am so thankful that he is not squeamish!
MartyJ - More good information. I won't be offended at all, but I have to say I don't envy the TSA person having to swab them...how gross for them LOL.
Zenful - will you be overnight in the hospital, or outpatient?
Cherrie - I already emailed them regarding hope lodge
I was afraid of it filling up quickly. Someone from the office is supposed to contact me with the information. We are going to try to fly in the Saturday before, so DH will be renting a car for sure. NOLA has always been on my list of places to visit, so I definitely want to do some "touristy" things a few days before, and I am hoping my hips won't hurt too bad, so maybe I can at least get out the days after surgery.
And yet another question - do they have pathologists on staff in NOLA? I was just wondering, in case the new lumps I have turn out to be "something". I saw my MO in August, and I had two small hard lumps, so she said they could be stitches. I saw my BS in September, he agreed with the MO, but passed the buck back to her and said to show them to the MO at my next visit. Since then they have grown, and now I have two more. They are all on the same foob, the other side has nothing. Odds are they are nothing, but was just wondering if they find anything out of the ordinary if they take them out and have a pathologist look at them. I see my MO next month and I will see what she says. I just don't like this "they could be" or "they may be" stuff.
(edited for horrible grammar)0 -
Mom, yes they have pathology available. It is really a full service hospital, though small.0 -
If you have lumps, they need to be checked out TODAY. Do not wait until surgery. Your key words are: they have grown and now I have two more. Call your Mo with this news and get an MRI or US this week. I don't say this to scare you, but we are learning to be aggressive with our own health. It could and probably is nothing, but don't take that chance.
You will get path reports from NOLA.0 -
Flappy Birthday Cherrie!
Mom of 5.....I wouldn't wait until your surgery to get the lumps checked out or even until next month when you see your MO. February is still far out...3 months. I agree with Cherrie...do something about it now.
My CT scan showed nothing, which is good, no seroma or hematoma, but there is SOMETHING there and it's big and it's painful. Could it be my abdominal muscles swelling? Do muscles even swell?0 -
So, three years ago today I heard the words "you have cancer"... so how did I "celebrate" this day? I had my biannual visit with my MO.... He thinks I look good, complimented my recon (even though he wasn't in favor of me going to NOLA)... We also discussed the follow up, how to monitor for a recurrance. I asked once again about MRIs and he said an MRI looks for microcalcifications. He said a recurrance is a mass, not a microcalcification which takes years to grow. Still not sure I follow the logic. If, God forbid, I had a mass on my chest wall, beneath my flap, am I to wait till I can feel it? Wouldn't it be pretty huge by then? So he suggested asking Dr D again, or Dr Stolier, if they would go along with it. I know Dr M uses MRI. So why the difference in opinion.
Good luck Maggie... will be thinking of you. Tomorow while you are under the knife, I will be under the needle (getting my fluid-filled thing aspirated.
Maggie2... sorry for the swelling... ugh.
Mom... no pathologist on staff, but they do send the tissue to a pathologist, and you'll get a report. I agree to get it checked out now though. TSI is no biggie... even the swab is nothing. They ask you to touch your bulbs and then they swab your hands.
Sure wish they had had the hospital beds at HL when I stayed there... I heard they were getting them... the word was that Drew Breese was donating them.0 -
Betsy, my BS in NOLA also said MRI as did my MO and PS. my BS here in MI wanted me to get a mammo. Dr. M freaked when I told her about that. How does your MO want to watch you then? I don't know why they say a MRI as I am not in the medical field and am doing what I am told. I figure 3 pot of 4 is a good number. Iwill be interested in knowing why too!0 -
momto5 I forgot to mention the drains!
When I went through TSA I had my letter but did not show it to them.
I went into that scanner thing and since the drains are plastic it did not show on the scan, so no problem. I machine if I had presented the letter telling them about my drains I might have been swabbed?
When I went to Vegas later in the month, after losing my drains and now wearing compression I set off the scanner (the metal zippers showed) and had to get a pat down. The girl asked me I was wearing something and I told her surgical compression, she then asked if I was tender anywhere so I pointed to those areas and she was gentle. On my way home from Vegas they didn't ask anything, just patted me down after the scanner.
Oh, don't forget to order a wheelchair for your return flight home when you book your plane tickets. They will bring you from check in, through security and to your gate. (They will even come back and board you if necessary,I waived them off for that part) . Same at the other end when you get off the plane. It's a long walk from terminals to luggage etc.
Btw, when I booked jetblue to NY from NOLA I had to call customer service due to an issue booking. I wound up with a really nice woman who booked me over the phone (waived that fee) AND placed me in 1st row, more leg room seats that cost more on jetblue. I had told her I needed the wheelchair for my return flight and she noticed it wasn't on my flight down, so I told her I was going there for surgery...she made a point to give me the legroom seats! At no extra cost. I'm tall,I would have gladly paid! Sorry so wordy!
Pat0 -
When bookng our flight we asked for extra leg room on the way back. They did this at no extra cost, however I would have had to give up those seats for a leader dog and owner or a military person. Thank goodness I kept those seats as I could not have shuffled into those seats. I used wheelchair assistance and I was treated wonderful. Even zipped to the front of the line. I was patted and swabbed. No problems. They were respectful.0 -
well I saw my GYN today for a follow up to see what is causing my irratic periods and heavy bleeding. She wants to do an endmetrial biopsy once this next surgery is done. May be getting that oorphectomy or hysterectomy after all. She looked at the arm and said there was no visble swelling and no redness so probably not cellulitis. Keeping my eyes posted!!! I most likely did too much yesterday at work and injured the elbow...does not want to bend well. Ibuprphen did help but cannot take it after today as I will be in the 3 week window. She allowed me to take it today to see if it would help an it really did for the pain.
I flew home from Chicago with drains and my LE wrap on the arm. They were more concerned about the wrap then the drains. Think I looked pretty aweful too with that big neck scar.
Maggie -20 -
Betsy, not sure what your MO means. It is mammograms that are better at detecting microcalcifications. MRIs are better at detecting lesions, and after administering contrast material, the amount of dye uptake within the lesion is evaluated for suspicion of malignancy. My MO has suggested an MRI one year after my bmx and every year thereafter for the purpose of detecting any chest wall lesions, which he said are very rare, but following reconstruction, there is no other way to monitor. You might want to get another opinion. Couldn't hurt.0 -
Lots going on here. Thanks for the info Vinnie! See ya Dec. 3rd:) Cherrie so happy you found some new bras:) Audrella...thinking of you sweet friend!!!I
Your date will be here before you know it Momof5.
Mags...I hope this already went away!!!0 -
damn it....the arm is now all red and hot....this sucks....sugery will probably be cancelled now. Gotta figure out whether to wait for a docs office to open or head to the ER
Maggie-20 -
So I never thought about the wheelchair....do you really think I will need it? I wonder how my butt will feel LOL. And good advice about the airline seats. I was looking at airfare yesterday. Would be nice to have the extra leg room.
Thank you for the advice on the lumps. I know they are there, yes they have grown, but I don't think four weeks is going to make a difference at this point....I will see what my MO says in December. It's not in the recent cancer breast, it is in old lumpectomy breast. My MO is a lot more "concerned/cautious" about things than my BS (he's the one that told me four weeks post MX that he is sure I am "cured"....I looked at him like he was nuts, since I did not know they had a cure for cancer; apparently HE has discovered it). Maybe she will order an MRI or something along with my labs.
Good to know the doctors in NOLA will send anything they find out to a pathologist.0 -
Oh Maggie!!!!!! I am sorry.0 -
Maggie - so sorry. So frustrating!
Mom - get the wheelchair. It really helps you navigate the airports more easily without getting overly tired. You will have checked most of your luggage, but NOLA will be giving you lots of "supplies" to take home so bring an extra collapsible tote or there may be a bit of shopping in NOLA. You won't need a lot of clothing while there. Keep it simple.
Not sure where you are flying from, but if you can fly Southwest you get 2 free checked bags per passenger and you can easily change flights if needed without having to pay a premium. SW is really helpful to people with disabilities and will let you board first so you can get the extra legroom seats easily. We were supposed to fly to NYC a few weeks after my last surgery, but couldn't go because of my DH's surgery. We were booked on Delta. We now have 2 tickets that cost $225 each, but to use them we will have to pay a $200 per ticket change fee plus the new fair difference.0 -
martyJ did you contact the airline and ask them to waive that fee due to unexpected surgery? They just might. What is that about getting the seats you want from southwest, is it NOT reserved seats? So it's first come first sit?
With Jetblue I had tickets booked for a reunion in Florida. Well, then chemo came along. I called, just to see about what the fee would be to change the tickets for a future date. When I explained the situation they put me on hold for a second came back, asked for docotrs name and phone number and gave me a full credit to use within a year, no fee! Jetblue also allows one checked bag free. They were way cheaper than delta and southwest (for me, coming from NY) AND if there is a delay on their service you get a $50 credit backin to your travel account, good for a year. (Yes, I shouldn't be raving about delays! But it is a nice bonus)
Momof5 DEFINITELY do the wheelchair. Mine was just a DIEP, it was very helpful to have that wheelchair. Of course I felt silly, but I wasn't sore or exhausted from all that distance I would have walked! When I got out of the chair to sit by the gate I told them to not bother coming back to wheel me on the plane, I knew I could do that walk.
Pathology from NOLA...be sure to ask for your copy when there if you remember. Same for your operative reports. I was making phone calls to get them sent. Luckily I reached "nice people"...because one day I received a call from someone in medical records telling me I had to fill out an authorization to get any copies of my reports (she might have been from hospital side?). I told her to never mind, I had them.
You should also request a copy of your CT disc and report.
my CT showed some suspicious things, but no one told me anything about it. Suddenly the reportshowed up in the mail at home a few weeks after surgery. Honestly, just as well, I had to go for MRI and another CT and I don't think I was physically ready for that. And mentally, Had I had to wait for testing, which I did because I had a trip planned, the idea of metastasis would have driven me nuts (which it did). Anyhow, look for your CT report, but don't look for it too early! If it was like mine it could drive you crazy! (I did my 2 tests, liver is a benign tumor) and my lung has "infinitesimal nodules" that mo says are likely inflammation, follow up scan in 3 months.
It sure is a learning experience. Take lots of notes from here!
Pat0 -
OK...I will get the wheelchair You ladies are awesome. I was looking at tickets...found some good prices, but like MartyJ said, they come with a "change" fee of $200 each, which is almost the price of the darn ticket to begin with. Very annoying. We are flying out of DC, and I am trying to find something nonstop, especially for the flight home, so it seems I am limited as far as airlines.
Pat - good info on the CT report. I hate tests. Lately mine have been finding stuff as well. I have been on a roll for the past 18 months LOL. I am happy to hear your biopsies were clear.0 -
Momof5Kids, I added your Feb surgery date.
Betsy, I too thought mammo's were good at small calcificaitons, and not MRIs. That's how some docs argue for Mammos vs. MRI.
My Onc won't recommend any scans. On the one hand, it would be nice to confirm all is well. But honestly, I don't want all that contrast crap in me either. The further out I get, the less I worry about this. Denial? I don't know. Just feels like living my life. But it's a journey for all of us, to find the right path that gives peace of mind!!!0 -
back from doc...spoke with Dr M this morn...got a shot in the behind to give healing a jumpstart. now antibiotcs for the next two weeks. She said keep surgery date so that is good! going to bed now...I ache all over
Maggie20 -
Mom, forgot you are in my hometown. You probably won't get a non-stop, but the change is not bad as long as you are not going through Charlotte. We flew USAir from NOLA as I used air miles for the tickets. Plane from NOLA got to CLT late and then it was a challenge in a crowded to make the connection. Every 85+ year old lady wanted handicap transportation and wheel chairs. Some were changing gates with a 2 hour layover. We had to be really strong in insisting that we needed to take the golf cart shuttle because we had a time crunch and that even if they couldn't tell, I had just had major surgery. Just a bit of stress.
Pat - yes, SW doesn't reserve seats, but when you get to the gate you go to the agent and let him/her know you need special boarding. If you are in a wheelchair there won't even be a question. My dh had a back brace after his major surgery and we flew to DC at 5 weeks. The SW gate agent just told us to stand to the side and allowed all passengers with disabilities to board first (no extra fee or anything). They were really great and helpful. We used the service round trip. So much nicer since he still had a lot of restrictions.0 -
Back from my aspiration... 40cc of blood.... hmmm.. hematoma? Doctor couldn't guarantee it wouldn't return, but due to it being blood it is more confident. I have had a spider web looking blood vessels on that hip since stage I, so maybe a broken blood vessel? The web seems to be gone now. Odd.
Flying SW next week with my 82 year old mom... so I intend to ask for pre-boarding for her going down. Coming back, I will be in the wheelchair, so shouldn't be an issue. For me, I find the wheelchair not as necessary in NOLA cause the airport is small... but in Newark, very necessary. I remember coming back after my first stage I and not getting the wheelchair, and I was exhausted by the time we got to the shuttle. Live and learn.0 -
After my last surgery in Sept. when I flew back and our connecting flight was in Houston, I was in a wheelchair right along side of Mickey Gilley. But I have had wheelchair assistance on the way back on all 3 of my surgeries and it was most certainly needed and all three were SW flights.0 -
I have found a non-stop to/from DC with US Airways. Once I get the paper work from NOLA (should be here this week) with the dates in writing, I think I will book. Just have to remember to call to get the wheelchair0 -
hi ladies! Out of surgery and actually walked to the bathroom. For our "last dance" Dr. D. Did a number! Pushing my pain button, you betcha!
Thinking of Amy and KaseyAnne! And to those coming up ... This is THE place with THE docs and staff. So grateful ...0 -
I wanted to chime in on the mammogram vs MRI discussion. I've had cancer twice, both times it was NOT visible on a mammogram and was clearly visible on an MRI. First time it was barely palpable and there was a small shadow on the sonogram. The radiologist was not concerned and recommended to wait and see. The only reason we biopsied was because I was getting ready to do IVF. It was clear as day on the MRI, 3 cm tumor. Second time it was neither palpable or visible on sonogram but caught on my annual MRI.
Mammograms are not an effective screening tool for women under 45 years old who have denser breast tissue. I was 37 when first diagnosed, and 43 the second time. Mammograms do have more areas of concern identified that turn out to be nothing, and can cause unnecessary biopsies. They are not standard of care and require preauthorization.
My last mammogram pulled muscles that caused cording in my axilla and TMJ that took me months to recover from. I suspect it may also have causes a vascular disturbance that contributed to me having permanent vision loss during my DIEP surgery. There are just too many risks for me personally to risk having a mammogram again.
Marsha0 -
Dear Marsha,
thank you kindly for sharing your story. I completely agree with you that an MRI can be a much better screening tool from a similar experience.
On another note, I need help and advice from you lovely ladies out there.
I have an issue that has been upsetting me so much and causes much embarrassment even to talk about it and I am hoping you can help me.
I had a bilateral mastectomy: on one breast they could not save the nipple and on the other they did a nipple sparing but for some reason the nipple has gone into overdrive since the surgery and is erected, hard, and protruding through clothes and bras 24/7.
I am not sure what happened at the time of surgery but it's like the nerve endings were triggered in such a fashion after the surgery that now that nipple is always erected which against the other breast looks hideous and unnatural, etc. Also, I am limited as to what clothes I can wear so I cover up, not ideal emotionally after all I have already been through.
There is a part of me that thinks I should go under the knife again and get the PS to remove the overactive nipple. When I told the oncologist that he flipped, "what?? He said, surgery for that?" He was against it.
Anyhow, has anyone out there experienced this too with the weird acting out nipple?
I have no promise as to what the PS can do, remove nerve endings under the nipple tissue? Or remove tissue so it does not look so huge? Wish I could say I feel something in that erected nipple but no, there is no sensAtion, nada, zero. So even from a sensory point of view there is no need for it as I am completely numb in that area.
Please advise. Feeling really down....
Lulu0 -
Lulu - I was cruising the Breast Reconstruction area and noticed a thread discussing this very issue. I am sorry I don't still remember the link, but apparently an erect nipple following a nipple sparing MX is not that unusual. Some of the girls were using a padded bra and others using 'silicone" dimmers. Wish I could help more!0 -
Yea, Celtic Maggie!! So glad you are doing so well so far! I enjoyed meeting you a year ago.
Lulu, I have no info - I wish I could help. Have you asked the Center for input on your situation?0
