NOLA in September?
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Thanks Spring! Trying to avoid a repeat of an unpleasant experience. I put it on my calendar. I will start Colace right after surgery and continue with Miralax. Whew!!
I did my 5k Komen walk yesterday. Ten years out!! They had beautiful music and released white doves at the beginning of the ceremony. I cried. I met a 40 year survivor. It was just what I needed. This year has felt like I had a BC diagnoses all over again. Two more surgeries to go then I will be celebrating BIG TIME!0 -
My mom asked - Hope Lodge has two rooms with the adjustable beds and they are both occupied. I'm still struggling to find a position where I'm not in pain. I'm trying to walk more by using a wheelchair as a walker. Otherwise it hurts my back too much from being stooped over.
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Forgot to mention - I did the miralax before surgery. After surgery one of the nurses gave me warm prune juice. That did the trick. I'm taking ducolax now.
My drain output is still really high so I might be going home with 3 of them. I meet with Dr S on Wednesday. I'm pretty miserable and bored right now. Time for a nap.0 -
Hey Ladies...
Just finished the pre-op day.... Wow, day from hell. Two nights ago my 3 year old was up all night with an ear infection...got no sleep... last night i was up packing and finishing up loose ends....Had to leave the house at 3:15am so I didn't end up going to sleep. Two flights and finally at NOLA... Non-stop appts from 10:30am to 5:30... Had PTSD when I did the CT abd. scan thing... it was weird... I was on emotional overload... no sleep... and all I could think of was my past MRI exam when I had a full blown panic attack...
Ok... I need you girls and your opinions ASAP. Something came up which I did not anticipate. History: 1 year ago on my MRI a small spot was seen... 2mm (super duper tiny)... The call was it was probably benign but to do repeat in 6 months. The repeat in December showed this spot was now 4mm... Some Drs. thought it was an infrmammary lymph node and no big deal and said do another 6 month follow up... One radiologist did try to find it on ultra sound and he couldn't find it... but did find another area to biposy which ended up being benign. So... in reality we still don't know what it is and that's part of my reason for pursuing the PBM.
Dr. Fuhrman the BS said he thinks I should do sentinal node biopsies... At least one on the "problem side"... but preferably two. I know nothing about this and the risks that go along with it..... He said worst case senario is they find something on pathology and I'll have to end up with an axillary node dissection which is way worse.....
Are there risks to doing the sentinal node biopsy? Jeannine later talked to Dr. D... and he felt that most BRCA's dont do it and it would probably be ok not to do it.... and apparently MD Anderson and Sloan Kettering don't do the Sentinel nodes with BRCAs at all... (according to Jeannine)...
I'm perplexed since I guess I have had these two MRI's with mixed readings... but I do not want any complications in healing in my arms...etc...
Please help.
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mother...removal of ANY number of lymph nodes increases your risk for lymphedema. I have it in my left arm...18 nodes gone and have had severe cording in my right arm where only a sentinel node biopsy/removal was done. You are wise to research a bit before the surgery...I know time is limited for you. Tough call I wish you all the best...not everyone gets the LE symptoms or the cording--its all a crap shoot...sleep well tonight...all will be ok and we will talk to you on the other side
klanders I am sorry you are not comfortable....no sleep is the worst...may you get some rest tonight
Hiked 2 miles and back to a waterfall today on my vaca...feeling pretty good. The pain is tolerable now and I am enjoying some wine on the balcony of our unit right now..whew...let's hope the worst is over
Maggie
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Maggie - you hiked two miles??? I can't even imagine going 10 feet without leaning on a wheelchair. That's awesome! Glad to hear you are doing so well. It gives me hope!
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Mags, you continue to inspire
Mother, hard choices, I had a ct scan in the morning of my pre op to see my veins and they called me back to do another ct scan because they saw something on my bones
they wanted me to compare with earlier ct scan, I went ahead with my planned surgery and don't regret a thing!! I am waiting for the report/ disc to be mailed to my onc, once he gets it we will compare. I have decided that this is my new normal and I am just going to live each day to the fullest and not jump everytime a test looks different. The worrying doesn't accomish anything anyway and my life is less stressful because of it.
You are already taking the steps to beat it so have faith in your choices
Good luck and we will send you lots of prayers and good energy, see you on the other side 😘0 -
I probably would do the snb if it were me. Had 17 taken out 18 years ago on rt arm and did the snb this time - one year ago. Reason I'd do it again is that it gives me comfort to know 0 nodes involved. I have heard of women who did pbmx and found ca - I'm not sure they could get the snb after you have the surgery.
However we are all so different you have to decide what works for you and them just not look back! It might be a gut feeling and even odds no matter what you decide.
Hoping all goes smoothly for you!0 -
Mother... I understand the quandry.
Option A: Just have the MX and if they find any invasive cancer they will need to remove many nodes as they would no longer know which one is the sentinel node. This could lead to major LE problems.
Option B: have a SNB now, and if its clean, then no more nodes need to be taken even if they find cancer in your pathology.
Personally, I had a SNB (and another node was attached to it) and have had no issues with LE. I think most people with SNB have no issues, but obviously there are exceptions. So, considering the fact that you have had "things" that they are watching, I can understand Dr Fuhrman suggesting it. He is the BS after all... Dr D and Jeanine are on the PS side of things. So in this case, I would trust the BS and his opinion. After my SNB I was very sore for about a month. but if you are having the MX, I assume they could do it right then, through the MX incision. For me, I had it done at the time of my lumpectomy, so I had two scars. Sometimes they do it a day ahead. But I liked that mine was done all in one surgery.
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Mother,
Here is what I learned in regards to the sentinel node biopsy. It cannot be done once you have had a masectomy.
It CAN be done prior to masectomy.
The purpose is to see if cancer has left the breast and gotten into the lymph nodes. (Which if it has would indicate it could be elsewhere)
Did the doctor indicate he will go back in for the axilliary node dissection if the pathology in your breast is cancer? (Meaning you lost your shot at "just an SNB" - since once a masectomy is done they can't do an SNB)
(SNB is determined by following dye that comes out of the breast leading to your lymph nodes...once your breast is removed they no longer have a place to inject that dye to find the SNB, so they take the axilliary nodes)
Yes, there are risks of lymphedema with any lymph node removal. I do not know if the lymphedema risks are greater if they take more nodes? Good question for the doctor.
One thing to do to AVOID the lymphedema risk is to let the nurses, etc know NO blood draws or blood pressure cuffs on the arm of the side that had the SNB....I had to let my nurses know that when I woke up in the hospital (I was NOT in NOLA). Now I have a medic alert bracelet for that warning, and I swear if I go in for a surgery I will write with a sharpie on that arm!
If the nodes are positive (have cancer in them) then it might change your follow up treatment plan, the same can be said for whatever was on your MRI, when they do the masectomy and do the pathology on that tumor it might affect your course of treatment. I am surprised no one has biopsied that area under MRI?
It is your call as to what you want to do.
In my case my doctor did 4 nodes when she did the SNB during my partial masectomy.
It was explained to me that Sloan does not do SNB, and honestly i could not understand why! One of my nodes had 18 Tumor cells in it (if it had 200 or more it is considered positive), so all 4 were considered negative. Unfortunately the characteristics of the tumors found in my breast bumped me into the chemo treatment plan, even though my cancer was considered to be stage 1. but honestly., for me, knowing there were 18 tumor cells in my SN , I was sorta relieved to be getting chemo. (Warped thinking isn't it!)
I am sorry I could not be of more help in your decision making. I hope I have given you enough info to make a more informed decision.
Hope you can get some rest and your 3 yr old is feeling better.
Wishing you the best in your surgery and future.
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Motherandchild...Are your lymphnodes under your arm palpable? If it were me, I would do the sentinal on the side of concern. My story is scary and not normal. I did the sentinal node during my bmx and dr. came out and told my hubby that thery were 95% sure there was no cancer in my nodes. Intial testing showed no cancer, but after the full testing all four had cancer in them:( I had to go back to surgery and have all 19 nodes removed. This was abou† 4 weeks after the bmx that I had to go back.12 out 19 were cancer and then had to have radiation. I have ILC which doesn't show on Mammo or ultrasound. It was only confirmed with biopsy. On my follow-up pet scan enlarged lymph nodes showed up under my other arm and it read benign appearing. I wanted a ultra-sound guided biopsy to know for sure. It was benign. Could you have a ultra-sound guided biospy? That doens't cause lymphadema. I don't have lymphadema so far. I pray everyday I don't get it. Just know all of your options so you feel right with it or it is going to drive you crazy worrying.
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Klanders,
I had a GAP surgery on Jan 23 and the first week of April walked 8 kilometers with a friend. I was really weak and couldn't do much of anything for the first 8 weeks. Between weeks 8 and 10 I saw a dramatic improvement... So hang in there. I know the DIEP is probably harder than a GAP but all the same, it will get better - I promise.0 -
klanders... I walked in the NYC Avon Walk (I completed 23 miles) in mid October after having MX and GAP in July and DIEP in August... so the walk was 7 weeks post DIEP. I felt great. The first couple of weeks are tough, but it gets better and better. Have faith.
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Mother - sorry to abbreviate but crazy how my autocorrect reacts to your screen name!🙆
Btw the snb didn't give me any pain at all while done with my bmx - the lymph node dissection was another story for 3 plus weeks!
I had snb in left arm and dissection with lumpectomy in right - I let no sticks or BP on right but have let them stick left for all my surgeries on left last year (6 surgeries).
Again, make your decision and rest well.
Hugs and sleep well.0 -
Mother, that's a tough decision. I had a SNB on my cancer side but not on my prophy side. I'm glad I have one "good" arm since I've had some signs of early lymphedema, even with just 2 nodes taken. Can they do the dye injection on the side without the suspicious spot, locate the sentinel node during the PMX, then leave one of those aluminum clips near the sentinel node in case they need to go back and check it later?
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Leigh Ann. Good idea. Did you mean on the side WITH the suspicious things?
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They want her to have SNB on both sides, so I was just thinking about the side where nothing suspicious has been found. If leaving a marker is a valid way to find the sentinel node later, then why have any taken during MX if invasive cancer has not been confirmed by biopsy? I wish I didn't have this disruption to my lymphatic system.
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I had a SNB on my prophylactic side. I did it because my cancer side had so much cancer I had to have a mx. The proph side had atypia lobular hyperplasia and did not need the SNB. I just was not comfortable letting my only chance for a SNB pass me by. I'd had 4 biopsies and was worried something was in there they couldn't find. Turns out, the proph side was clean, but the cancer side had 1 positive node. I went in thinking I did not have IDC and was not prepared for the ALND. I mean, I knew the SNB was to see if there was cancer, but I guess I never thought there was a positive node that would lead to ALND. (Dense breasts)
The good thing about having a SNB at the Center is that they are fully aware of how SNB can disrupt the lymphatics. There is less rooting around, as Dr M would say, to find the SN. It does not mean that there is no risk, just that NOLA is more conscientious than some of the surgeons we hear about. Lymphedema is still a risk with only MX.
Currently I have no LE issues at all on my SNB side, latent issues on my ALND side.0 -
Sorry to be a pest but you'all have been so helpful. Did any of you experience a change of taste buds after your flap surgery? Nothing tastes right to me still. (I've had no chemo so can't blame it on that.). I'm forcing myself to eat. My husband sent me here with wonderful healthy smoothies but I can't get them down.
I'm a bit of a mess this morning. Two nights of poor sleep, nightmares and night sweats in addition to the pain are about to do me in. I might try to see Amy today. It's hurting/burning when I breathe deeply, too. So very weary of this pain. 3 of my drains are producing a lot. One of the breast drains has never produced much so we wonder if maybe it's clogged.
Thinking/praying for Mother as she has her surgery this morning.0 -
klanders - I did and nothing tasted good at all the first week. I've also haven't been hungry since my surgery 6 weeks ago tomorrow. I have to eat really small meals or I'm really uncomfortable. I'm sure it will get better. Just keep eating as much as you can.
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Klanders you are not a pest!!! You just went through a huge ordeal and we are all here to answer as many questions as we can and offer support. The taste bud thing is more than likely the antibiotic you are on. If it bothers you can ask to have it switched, but again no guarantee the new one will be different. You have to stay on them as long as you have your drains.
As for the breathing thing, call the center. Hope you get some sleep and relief soon!!!
Praying for you Mother!!!
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Klanders... I didn't have a taste bud issue, but I didn't have an appetite, which thrilled me as I thought this would be great to lose a few pounds. But I found my appetite again
As for breathing, I did have some lung issues and while in the hosiptal they took a chest xray to see what was up and determined a corner of my lung hadn't fully inflated. Use the incentive spirometer religiously. Once I got home, it got worse one night and I couldn't take a breath without pain, so I went to my internist who sent me to the hospital for more tests (lung function tests). This required me to lift my arms high above my head for 10 minutes... Not the best thing to do just after a flap surgery.
So... be diligent, use the breathing aparatus, and be in touch with the doctors if it gets worse.
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Morning all --
Klanders, Betsy is absolutely right. Use the incentive spirometer. I actually nearly got pneumonia as I didn't use it. Truly, though to start with it may be a pain, as you gain in capacity (and it does help to rid you of the inhaled meds), it seems to work wonders!
I had SNB at the same time as my mastectomy. The BS waited for the initial biopsy (negative) and at my post-op two weeks later, the final was in (also negative). Did have some pain from the SNB, but it went away. No issues with lymphodema, but my sister is a PT specializing in lymphodema, and she read me the riot act, so I had to follow directions! LOL! And she's the "baby" sister! MX and SNB were all done at a different hospital than the Breast Center ... if I had known then what I know now! Sigh ...
Anyway, hang in there. Best wishes Mother! And Mags, YOU are an inspiration!
Maggie-1
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Kristin, I had the taste problem. It actually effected taste, smell and vision caused by minocycline. If you are on that antibiotic, ask for a change. Dr M switched me to cipro this time and told me to ad the minocycline to my allergy list. Good news is that the problem goes away about 2 days after going off.
Also, the oxy gives me nightmares, but the dilaudid didn't. I second Betsy on the incentive spirometer. Gotta use it often. It is hard and feels as if it isn't helping, but it really does.0 -
It always bugged me how the nurses (not NOLA nurses, necessarily) in charge of making you use the incentive spirometer 1) assume you know what to do with it, and 2) are so "angry drill sargeant" about it. They've never bothered to explain to me *why* I would want to use it--and that's with 4 surgeries where I was given one. After my first surgery I figured it out on my own (after not using it at all or even taking it home with me from the hospital) but geez, a little explanation goes a long way.
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I've been using the spirometer a lot but at best I get it between 500-1000. Is that okay? My antibiotic is bactrim. I tried just taking Tylenol yesterday but that didn't work so well so started taking Toradol again last night. I might have to take a flexerall (for muscle spasms) this morning because I can't stand - my back pain is so bad. It's so encouraging to me that you've made it through but it sure is hard being in the thick of things.
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Klanders, I don't think you are pestering anyone - we all want to know your progress, help in any way and I believe when we share these things it gives the newbies a more rounded idea of what might or might not happen so they can be somewhat not freaked when something like that happens to them.
When you mentioned your taste buds immediately I remembered people sharing on here about their same experience and lo and behold, it was Marty and a solution was presented (which may or may not work in your case). We are all different but we all share this journey of unknowns and new reactions to this dx.
I definitely would contact the Dr. while you are there about your lung issues. I know I contacted my Dr often when I was in town and he told me that if I wanted to come in daily I could (of course I didn't want to) while I was in town. Better to ask while you are there and can go to the office if needed than to be home and wish you were closer!!!!
Mother, of course thinking of you as well.0 -
Klanders -- and know that we've made it through is one thing ... knowing we are all there are supporting, though it isn't necessarily tangible, is another. You, too, will be where we are soon and advising and supporting others who are heading into or where you are now! Gets better every day even though some of the days it is minute baby steps!
As to the spirometer, ask the nurses, but I was pushed to get 2000-2500 and hold it there. After last surgery was particularly hard. Took it as a challenge (I am Scots-Irish) and was there before discharge.
Bactrim did make things taste funny to me, even with little appetite. They can change it ... Dr. D. did so and I was on Keflex (and that made me nauseous!). And I had to stay on the hydrocodone for quite a long time, though I was able to cut the dose in half when I got home. Tylenol has never done squat for me pain-wise. Rather take aspirin, but that was really frowned on! Each of us are different; each has her own path and needs. Just remember you are special, as each of us are, and that you need to do what is best for you right now.
I know this will sound inane, but try to "relax" into the healing ... music helped me a lot as I had no interest in reading (which should have told me something!) Hang in there ...
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Klanders, hang tough! The first few days/weeks are a rough go, but it does get better. I agree keep using the spirometer religiously. Also, keep walking through the achy back. You will notice each day, you are able to stand up a little straighter. I hope you get some sleep soon!
Good luck today mother!
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Bactrim was the antibiotic I was on to begin with and it was the cause of my nausea. After the Dr. changed it I was fine.
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