NOLA in September?
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Hey Ladies, popping in really quick - just had my 6 month stage 2 surgery-aversary! Still working 80 hour weeks and dealing with a manager who I think has it in for me from the time I took off for the two surgeries last year - no way to prove it though so I'm still slogging away and trying to move to another group - sigh. Sad that I barely have time to post or read but hope everyone is okay!
Just wanted to say I spoke to Tamara (Jane123)'s friend this evening and she said she was out of surgery and Dr. D said everything went great. She was still in recovery and won't have access to email until Thursday or so but all sounds good...hope we hear from her in a couple of days with good news...
{{{hugs}}}
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Caitlin... I had a lot of skin issues... blisters, raw skin. All my blisters eventually broke and the skin scabbed over. I also had an incision open up and so they flew me back to do a debridement (cut away dead tissue) and wound vac me. But this was mostly because it was a leaky mess, and not because of the skin. I think they felt that the skin would eventually heal and they could pretty it up at stage II... But because I was there getting all teh wound surgery, they just removed the skin and patched me up with ab skin during a DIEP re-over... so I can't tell you what happens down the road. I was blistery and raw for about 2 weeks, then scabby and leaking for another 2 weeks, then back to surgery.
Dana... Sorry to hear that work hasn't improved. BTW, about tats, I am in a holding pattern... waiting for a surgery 2b before I tat myself... but if you decide to come out and see Vinnie, please know you are welcome here.
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Re: Jane123 - just got an email from her husband that she is in her room and doing well. I will give her a call tomorrow.
Denoument - Sorry about the 80 hr thing and your ^&*hole manager. Do you work for a Fortune 500? Any recourse with HR or is that not where you want to go? Wish you strength to get through all this.
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Wow, now I'm all worried about the skin. Nothing's popped open so far but I do have a lot of peeling going on. I asked if I could put something on it like vit. E oil or something and they said No, just maybe a little bacitracin on the nips if I wanted to. Dr. D doesn't seem to want betadyne on anything but holes, so I've only been using that on the drain sites. Eeps.
My biggest frustration at this point is that the breast pain is pretty unmanageable. I take a pain pill every four hours around the clock but it only dulls the pain a bit. The nerve endings all around and under my breasts are hypersensitive and it feels like they're in a hot vise. I don't think there's anything wrong. I have no fever and the pain is even - no hot spots. But I was not expecting this much pain at this point. I feel like a wuss to complain though. Other than the pain, it's all been pretty smooth sailing so far. Tomorrow is three weeks for both me and Caitlin.
Oh, and Need2new, awesome limerick! Thanks!
Eva
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Eva... I wouldn't worry about your skin... The minute I came out of surgery, they were concerned about my skin... big blisters and raw. Dr D told me that they got too close to the skin during the MX, like scooping out the tissue and taking some skin along with it. And one reason my iscision opened up is because they had my putting ointment on the raw skin... and so things were to moist... Keep in dry.
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Eva - the nerve stuff and vise feeling stops soon, I promise. Had the same feelings and it does taper off. Also the peeling skin. Swelling will go down and vise feeling subsides.
I found that the fleece next to my skin helped the really annoying places and when I sleep at night I sleep naked on top. Getting to take off the bra at night was heaven
Hang in there, I am at almost 6 weeks (thurs) and turned another corner on Monday.
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Nerve pain is scary. Post Mastectomy Pain Syndrome is real, and not often discussed as it is not well understood. Eva, I sent you a PM.
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Cait - I "popped" a hole too, probably as big as a pinhead. I officially FREAKED OUT, emailed my PS (he was awesome, emailed me back at 10:45 on a Saturday night!). It postponed my rads, but he feels that it will heal itself, from the inside out. Probably what you have heard as well. Keep us posted.
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Anne, thank you - and thanks for the PM. I never heard of it before! But I'm going to ask about it today. It's three weeks, so I'm expecting a call. The pain really is constant, though it seems worse in the late afternoon and evening into the night. It's more manageable in the mornings, though never absent. I'm trying not to freak out about it, but the thought is pretty discouraging.
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Hi everyone, Packing up to head to New Orleans Saturday. I keep thinking of these little questions. How big of a role did your "Helper Dr" play in your post op progress? I know this is going to vary greatly case by case but I would still appreciate hearing from you. Thanks
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Good luck to you, Downey. You're having the same surgery as I did, it looks like. I don't really have a "helper Dr" at home. I've been to my primary doctor (unrelated to the surgery) and showed her my stuff and talked about it. She was highly impressed and said her nurse would be available for things like removing stitches or drains or whatever. I don't even really have a GYN. I probably should. But so far it's been all right. You're in good hands there, as you know. The donor site (same as yours) has been remarkably pain-free. It's felt a bit bruised at times, but no problems sleeping on my back or sitting. I was very nervous about flying, but that went smoothly too. If you haven't done it, arrange for a wheelchair for your trip home for every step of the way. You'll be able to walk, but you'll get to skip waiting in lines which is fatiguing and no risk of being rushed or bumped. Go ahead and let yourself be babied. Travel is tiring, but manageable. I don't know how far you're going. I emptied my drains in the plane lavatory which was kind of icky, but not any real problem.
Jeanine from the clinic called today to check in with me, as expected. I asked her about the pain and she said it was completely normal and too soon to worry about. She said a few lucky women are off or cutting bac pain meds at three weeks but most are not. She did say I could add some ibuprofen at bedtime for extra relief and it would also help reduce inflamation. So I'm taking the pills, resting a lot, taking a walk every day and have started working an hour or so a day, trying to catch up (desk job and I work from home, but it's still hard to focus). Trying to be patient! I had based my recovery expectations on the hysterectomy I had two months ago which was an easy peasy recovery. But apparently this is a whole different ball of wax.
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Eva, I had the hyper sensitive skin issues, could not even blow air on my skin or it hurt. People told me maybe it is the nerves working to heal up. It stopped after about the 5-6 week mark I think. It slowly started changing. I can't remember the order but there was pain, burning, etc. I think when it went to burning feeling it was getting better.
I called the center and asked them about this, and they said they never heard of it (??)
But I asked Dr. D. when I went back for Stage 2, and he said there is a lot of "attention" to the skin so it sometimes happens. For me, it was like an upside down T, between and below my breasts. I wore no bras NOTHING. I could not stand it on my skin.
It got better!!!! It does not stay like that! (Thank goodness!!)
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Hi Eva, thanks so much for your reply. It's good for me not to expect too much too soon. I had a great and fast recovery from my hysterectomy also. I was on my horse "just walking" at two and a half weeks......In know very STUPID! It sounds like you have the hard part over and just have to let your body heal. I know that I'll be needing this same advice in a few weeks. Healing hugs being sent your way.
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Downey... I also had a GAP flap... and for me, I never had any pain... stopped pain meds before I left the hospital, so maybe I was one of the lucky ones. I had lots of other issues (skin issues, lung issues...) but no pain. Oh.. and about a home helper, I had spoken with my local BS and Internist prior... they both agreed to do whatever they could... In the end, I never needed my BS, but I dis end up seeing my Internist, for my lung issues, and an infected port, but nothing all that connected to the surgery.I used photos and made phone calls back to the Center, and they were very helpful.
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Hi hipsters--Did/do any of you still have pains (ranging from dull to sometimes quite sharp) near your hip/bottom incisions? I'm 2 months post-stage 1 and sometimes it really hurts! I don't see or feel any seromas (the one I had originally seems to have gone away on its own).
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Eva where is your pain? I had pain in my sternum area for quite a while. In fact, it still feels tight and sore at times and I am almost 6 months post op. My lower abdominal area where they cut for DIEP is SORE when I do sit ups. A bit worried but I canʻt really do much about but hope it continues to lesson over the years?
Anyone with nipple recon? I have a huge scab about the size of 1/2 a nickel under the reconstructed nipple. I may only have half a nipple after it all heals? I am 8 weeks post op. Does anyone know when this huge scab is supposed to come off?
This time around my healing has been slow. I have areas on the breast where the incision is with 3 small pin holes and a larger one about the size of a pin head. I love the ocean and have been holding off though Stacey at the Center says I can go ahead a swim.
Well, Iʻm a bit stressed that my oncologist has switched me to Arimidex. Didnʻt take any yet. So afraid of the bone loss. Was on tamoxifen for 4 years now and had non cancerous polyps. Anyone on arimidex? I also have a bad knee with arthritis, I think the arimidex will make it worse. But, what are my options? Cancer or knee replacement? Arrgghhh!
Thank you for letting me share my stress. On a positive note, I did go to zumba today.
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DJ, I'm three weeks out and have not really had pain in the donor site. Some bruisy ache and some tightness when I bend over, but no pain to speak of. What do they say when you ask them at the center? Has it hurt all along or did it start after a while?
SurfaGrl, the sharper pain is all around the perimeter of my breasts, where the numbness ends. It's hypersensitive. I also have pain inside that's duller - a pulling tightness like a vise or like they're attatched to an anchor. It's enough to wake me out of a sound sleep when the meds wear off. Here it is 3:20 am. I woke up at 3 and can't take a pill untl 4. So here I am killing time.
I'm awake when I should be in bed
Want a pill but I'm surfing instead
My cat is so near
That I'm starting to fear
If she walks on my chest she is deadThese pin holes. How hard are they to see? My eyes aren't great. I look at the incisions with a magnifying mirror and there are pin size dots and a dark line of varying width but it doesn't look like anything is obviously an opening. Would it be obvious?
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Oh, you girls. Don't go looking for problems! Follow the docs directions, keep things clean and dry, wear what you're supposed to wear... it'll all be fine.
Sometimes the pinholes are the result of a stitch not dissolving or your body trying to push it through from the inside. Your body sees it as a foreign body and creates a little infection around it to soften the skin so it'll fall out. If you see a stitch in the center of a little irritated area you may be able to clip it shorter or pull it, and your skin will heal right up.
Just keep things clean and dry. If you do have any tiny open areas the betadine will keep it disinfected, the dryness will keep it from getting bigger by allowing a scab to form. Dress it, get dressed, and forgettaboutit!
Sternum pain: that's from where they took cartilage, to get to blood vessels. It'll lessen over time but you may be feeling it on and off for months, especially if your flaps are heavy like mine. Might help to wear a light bra to bed, if you aren't doing that already.
P.S. Of course, keep in touch with the doc about any concerns. Some things are best left alone, some things are best nipped in the bud. But having had 20" of incision x2, plus breast incisions x4, plus nipples x3--everything heals eventually. You mostly just want to keep it from getting infected, and keep it from getting bigger. Your body will take care of the rest. Extra protein and vitamin C will help move things along more quickly.
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Oho, sanity and reason? Where's the fun in that?
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Ha!
My "waterbed" butt is very sloshy....... can't wait for March 15!
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Surfa... no scabs here... Never did have anything like that... have you asked the doc??
And butt pain?? I never had pain. I had a feeling like I had worked out hard, but no pain. I am now 3.5 months post stage II and have no pain at all ever.
Breast pain? I still have some discomfort around the flap edge... I think it is a little necrosis, and will see what happens over the months, and will have Dr D deal with it later. Initially after Stage I, I had some discomfort under the breast and was told that was where the flap was stitched to the chest wall... so that might explain your pain Eva... It will pass.
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Hi Adey - If your waterbed butt is bugging you, you might consider having it aspirated once. Aspiration really isn't a big deal. For me, it was completely painless because my hip area was still numb, and it was much more comfortable than carrying a lot of fluid in my body. I had 10 aspirations over about three months and eventually the seroma stopped refilling.
Re hip or breast pain, I had soreness but little actual pain after two-three weeks. The soreness and stiffness lasted for a long time and I had kind of a straddled-legged walk for quite a while. Now, almost six months out of Stage 1 (no Stage 2 yet), I have no pain in my breasts and just a sore spot on one side of my butt that hurts a little from bouncing when I run. Eva, I really hope your pain resolves and you start seeing some improvement. I did have a lot of cramping in my chest wall muscles in the first month or two and that was pretty uncomfortable. That has entirely gone away except a little bit if I swim breaststroke.
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Thanks RfS! Wow, that's almost once a week. I don't have pain just some crazy jiggles. (c: I have less than two weeks so I am going to tough it out. Basically I'm lazy and don't feel like going to get it aspirated! Hope I don't grow out of my pants! I am curious, what made you decide to wait so long for stage two? I am so impatient. I guess I'm feeling that after stage two I'm pretty much done except for tweaking. Although Marga has said that I will need a 2B. Do you have your stage two scheduled yet?
jeskachi- I have the same attitude. Probably has something to do with my not getting my waterbed butt aspirated. I know it will be taken care of March 15. Woot!
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Hi Ladies,
More bad news yesterday. It turns out from my path report that I have a 9/9 in terms of agressive cancer; likely to come back in less than 5 years and spread. I am keeping my fingers crossed for the PET scan that it hasn't spread anywhere other than the two lymph nodes.
Anyone with highly aggressive cancer that has made it 5 years or more?
The doc said that I have two options in terms of chemo, but if it comes back it cannot be cured. I haven't researched either option yet, but I am leaning toward Andrimycin and Cytoxan. I would do four cycles of that. The other option would be Taxolene, Carboplaton and Herceptin x 6. In the first case it would be followed by Taxol and Herceptin weekly for the balance of a year. In the TCH would be followed by Herceptin for the balance of a year. Thoughts?
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Correction: Adriamycin
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Scary news, Caitlin. Don't let yourself go too far in your brain about this. Get the PET. We'll be visualizing a clean scan for you. I didn't have chemo, so I'm of no help here. But I'd probably hit it hard, hard, hard. Go big or go home...
Hang in there.
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Thank you, Anne! Thank you for your kind thoughts. I am visualizing all good things, too.
Corrections on the chemo: Taxotere and Carboplatin--sorry, couldn't read my doc's writing, lol!
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Caitlin - I had stage 2 triple negative cancer in 2000. I did adriamycin and cytoxan. I did have a DCIS ER/PR+ in 2011 which is why i had surgery for NOLA but I didnt need chemo for that. I also have the breast cancer gene BRCA2. Hang in there. So just yesterday it was 12 years since my initial diagnosis.
Denouement - sorry to hear about the long work hours and evil manager. hang in there too!
edited - I forgot to add that I think I am ready for my tattooing......anyone know what I do to contact Vinnie? I read that he does work at a hospital near me so I probably won't fly back down to Nola.
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What difficult decisions Caitlin. Prayers for peace, strength and guidance. I did TAC chemo, taxotere, adriamycin, and cytoxan. Six treatments every three weeks. I was her2- so didn't need the herceptin. Healing vibes coming your way and I too will be visualizing clean scans.
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Caitlin, I too had a very aggressive cancer. Er/pr- her2+3. I had 4cycles of AC then weekly taxol with herceptin. I was actually on a clinical trail for herceptin before it was approved for BC that had her2. I was stage 3. That was over ten years ago! Those stats your onc gave you are just that ....stats. You are going to be the one who surpasses that!! I know it is hard to think that but stay positive! If you need to chat ever let me know. Hugs!!!!
Michelle0
