December 2020 Surgery Group
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I wish I had said something about my IV for surgery. It was immediately painful when she put it in, but she was rushing like we were late and I'd never had one in that location before so I thought maybe it was just a sensitive location. Also, she never asked me if it felt ok like they normally do.
This photo is six days out. I normally have no bruise after an IV. My lesson to speak up for myself.
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iamloved: I am anxious to have my meeting with my radiologist...I’m a planner and being in limbo is not fun! I have done some searching for places to stay and I can rent a very nice furnished condo for $1800 for 5 weeks. There are some that are less, but I want to be in a safe area. Only being 2 hours, I plan on driving home probably wednesdays and fridays as long as the weather is nice. It’s so great that you will have lots of visitors...think of it as an extended vacation maybe! Maybe I should look at doing radiation some places warm!
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Positively, my wrist hurts just looking at that photo! I'm sorry that happened to you, ouch. I've had some bruising from IVs before but never that bad.
Hopeful, I know a few posts back you were feeling discouraged about not being "tough" and I'm going to throw the advice you gave me earlier right back at ya: You ARE tough. You are fighting cancer. If you feel down, or discouraged, or in pain, that is just part of the fight. You will get through this. You're not only a tough person, you're a tough person who takes the time and energy to support and encourage others. So I hope you feel that support when it's your turn to get lifted up.
As for me, I'm still struggling with a lot of nerve pain -- I feel like a bore talking about it. I have to remind myself to tell my husband that I'm in pain because otherwise he doesn't know (duh, why can't he just read my mind?). I think it's getting a little better? The progress is so incremental I feel like I can't see it but the Occupational Therapist came yesterday and said I'd made a lot of progress in range of motion from last week so that's nice, to have that perspective. It gives me hope that maybe I am getting better.
I got my first fill on Monday and it was not at all painful, so that was a nice surprise. 60 ccs. And my breasts look a little more like actual breasts, though kind of square spaped. Spongebob SquareBoobs. Also I sort of stood up to the plastic surgeon when she said my "discomfort" was something I might have to get used to. ("It's not discomfort, it's PAIN.") And she prescribed me something stronger. I haven't tried it yet but I'm glad I have the option. And I'm proud of myself because it's not always easy for me to speak up to authority figures/doctors.
Saw the oncologist on Tuesday and another pleasant surprise, she was very... human, which is not a trait she'd really shown before. Tentatively scheduled to start chemo (AC+T) on Jan. 20, so I'm just focusing on trying to heal/get stronger before then. Also I'm going to see another oncologist Friday for a second opinion, just in case he recommends something wildly different for treatment.
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hopeful - Did your breast turn leathery or shrink from the radiation
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Twinkle, my lumpectomy was on 12/30. By 1/4, I mostly had some achiness which was easily managed with ibuprofen. I also started to get stabbing/tingly pains. I spoke with my nurse navigator and she reassured me that is completely normal. Surgery severs and injures a lot of nerves, and the nerves complain as they heal. She said "basically, you're going to have nerves throwing temper tantrums for the next 6 weeks or so." She advised tylenol for the nerve pain, as it seems to work better than ibuprofen. Today, it's mostly just weird and distracting. I experienced very similar pain after my wrist surgery in 2015, but I'd forgotten about it. I'm taking comfort in that this is actually a sign of the nerves healing.
What may drive me absolutely mad is the hives/rash/skin reaction from the antiseptic! I have very sensitive skin. I've been struggling with eczema for about 5 years since my allergies worsened, so I was already worried about my skin from the pre-surgery showers. Fortunately, my surgeon used surgical glue, so I didn't have to worry about any tape reactions. In hindsight, I should have wiped off the antiseptic as soon as I got home from the surgery center. I was way too dopey with anesthesia hangover to think of it.
Has anyone else had a skin reaction to the antiseptic like this? I'm trying to decide how worried to be.
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mtspacekace, when is your radiation oncology appt? I hope you get any questions you have answered.
Positivelyhalffull, your poor arm! I hope it's feeling better! The return to work question is a tough one. Even if you feel up to it, if you return early will you continue to feel good and continue the speediest possible full recovery? It sure is difficult to know.
Blue1002, thank you for your post. I am feeling better, both physically and mentally, although I didn't get my last drain out at my appt today. It was disappointing, but I'm just gonna move right on past the disappointment. I got my first fill of 50cc (currently at 200cc). I'm right there with you on the Spongebob Squareboobs. Describes mine quite well, too! The nerve pain is definitely the most difficult for me. My PS told me it will go away in time and the best thing to do is to massage the area, which for me is under my armpit to collarbone. I so appreciate your encouragement. Thank you!
Twinkle, my skin did not get leathery or shrink. There was absolutely no evident difference between my radiated breast and the untreated one. I was likely very fortunate, but I did treat it with lots of care during radiation and made sure to ask my radiation oncologist any questions I had.
ToadNae, I have so much empathy for your rash! I had a rash from neck to under my breast after my lumpectomy. The surgeon said it was from the chlorhexidine they use to cleanse the skin prior to the surgery. I did not have the rash on the breast itself (thank goodness) as they must have rinsed that area when surgery was completed. I also had wished I had rinsed my skin, but I had been told not to shower for 24 hours so i didn't even think about it. The surgeon did tell me not to itch the rash as it could cause an infection. I now have chlorhexidine in my medical records as a sensitivity/allergy. For my recent mastectomy, I have had no rashissues. I also did not use the HIbiclens they have people shower presurgery with as they told me it has chlorhexidine in it. Instead I used Dial soap. Hang in there! It will get better!
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ToadNae- I had it but thought it was a reaction to antibiotics. My NP thought it was eczema. It was blistery and scaly and painful. I still have it and it’s hard not to rub it.
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Toadnae - Thank you for letting me know about your lumpectomy experience so far. It makes sense what you were told about the nerves. My nurse also told me to make sure my bra was supportive enough. Today has been much better. I’m sorry about your skin issues. I hope it clears up quickly!
Thank you to everyone who has supported me and answered my questions. I’m amazed at the fortitude you have even though you’re going through so much pain and discomfort.
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hopeful23...Thank you for your radiation experience. I am glad to hear you had little fatigue and the creams worked. Great tip to put it on immediately after treatment.
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anyone else have wounds that look scary and gross? I had surgery 21 December and have a wound next to my left nipple that is fairly deep and wide. My plastic surgeon’s PA told me to apply neosporin and keep it covered with gauze, but didn’t seem overly concerned — although she did look a little surprised when she first saw it.
I assume it will heal eventually, although will probably leave a gnarly scar, which mostly doesn’t bother me. In my deepest paranoid fantasies though I worry that it won’t heal, causing my nipple to fall off, and forcing me to get a mastectomy after all. The only part that bothers me about the idea of a mastectomy is I really don’t want more surgery, especially after mostly recovering from the first surgery.
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Melbo - Yes, my incision has been ugly! I had surgery on 12/30, and I was certain it was infected after about 4 days. I sent pictures to my nurse and surgeon and they said it looked great. I cannot imagine what an infected/non healing incision would look like. It finally started to look a little better and start to get smaller about 7 days after surgery.
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well it never ends.. when I had my lumpectomy I had to have it redone because the margins weren’t clear. Now after my mastectomy (12/18) I have to go back into surgery on Tuesday (1/12) because I have an infection. A seroma burst yesterday, which apparently is common but talk about panic setting in when you see bloody water fluids leaking out of your breast. So after 3 days of fever, chills and nausea I feel better but man I don’t want another surgery!! So ladies, if you’re concerned about your scars ask your doctor what they think don’t play doctor we all have to be our own patient advocates. Keep your incisions clean (although I did) be extra cautious. Surgeon said she didn’t remove enough skin that was radiated the last time. I keep telling myself one day at a time.. it’s about all that’s keeping me going.. stay he
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StaceyG6368
I can relate, I had a lumpectomy and SNL biopsy but it turned into axillary disection. They did not see any positive lymph nodes in any of my scans but detected it with the radioactive scan during surgery. Very scary when things go unexpected
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Blue - Great job advocating for yourself with your Plastic Surgeon. That's not easy to do, but it's so important because we're the only ones who really know how we are feeling. I'm striving to be better at that.
ToadNae - Thank you for sharing that Tylenol may work better for this nerve pain. I too had a skin rash everywhere the antiseptic had been after my hysterectomy. It went away fairly quickly, but I mentioned it to the doctor at my followup and he put in my chart not to use that kind. I had no trouble with this surgery, but I think I washed it off sooner too.
Hopeful - I'm sorry you weren't able to get your last drain out, hopefully soon.
Melbo and Twinkle - It's so hard not to worry when it seems like things aren't healing like they should. I still haven't been able to see my incisions because of the Steri-strips which is probably a good thing.
Stacey - I'm so sorry you're not only having to go through cancer treatment a second time, but having complications. I hope things turn around for you soon and that your next surgery goes well.
AB45 - I'm sure it's discouraging to have more extensive surgery than expected, but it's good that they caught it.
My surgeon called today and my chemo worked. They found no cancer in the tissue they removed during my lumpectomy. Prayers for good news all around!
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Thank you for the radiation information, I was told before surgery that I had two options; lumpectomy + radiation or mastectomy, after mastectomy I’m told that the margins are too small, so I need radiation, also because the node they biopsy was damaged by previos SAVI radiation, thanks to your info, I know what questions I need to ask. Thanks again
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Has anyone being told that you need to have the ovaries removed, as a preventive measure?
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Veronica - I’m sorry you’ll need radiation after your mastectomy. Praying for you
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Stacey - I’m so sorry you need more surgery! Praying it will go well and you can be done with surgery and start healing.
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Hi Veronica, We're sorry you need to get radiation . As for getting your ovaries removed, it really depends on a great number of factors. You may want to read here for more information (https://www.breastcancer.org/treatment/surgery/pro..._/. Do you know if you have a genetic mutation? So many factors to consider! We're here for you in this decision-making time.
Warmly,
The Mods
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I've just learned that I'll be able to take my radiation treatments at a local hospital 16 minutes away instead of having to travel 1 1/2 hours each way to my breast cancer clinic. It makes me a little nervous because I have so much confidence in the treatment I've received at the clinic so far, but I think that travel time daily would be too much for me. Anyone else doing radiation at a different facility?
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positivelyhalffull: I will be doing rads at a different facility, it is 2 hours away... I live in a small town and the place I go is basically a satellite of the hospital in the larger town. I got my chemo there, and blood draws, and my oncologist comes down once a month for appointments. I love my nurses, when I had surgery at the main hospital I wish I could have taken them with me. I will find out tomorrow what the plan is going forward for therapy, as I had residual disease left after chemo...I’m thinking it will be kadcyla, and I hope I don’t have to get it while doing rads at the other clinic...I will most likely be staying with a cousin while doing radiation, and coming home on weekends...I just love my infusion nurses at home
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Mtspacekace - I'm sorry you had residual disease. I'm sure that's dishearting after going through chemo. Are you doing Herceptin and Perjeta for the rest of the year? It's nice that you'll have someone to stay with for your rads and that it's close enough for you to go home on weekends. I do think that will be good to have consistent nurses at the local hospital. I've never had the same infusion nurse twice at my infusion center.
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Hi All
I wanted to give an update after my lumpectony surgery. After my surgical pathology report, I had a surprise, welcome to breast cancer. My pathology showed positive lymph nodes that no scans detected or saw. My stage 1 went to a stage 3. I am not trying to scare anyone but only posting to prepare others, it can and does happen. This journey is unpredictable and truly no one knows what turn is next. Buckle up for the journey and try to take one day at a time.
Sending positive vibes for healing to everyone!
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AB45 — that’s awful. I’m sorry. Does the change in stage change your treatment plan at all?
After my surgery they determined that one of my nodes was also positive. In my case that node showed up funny on the ultra sound and was biopsied, but the biopsy didn’t show any cancer. Technically the positive node moved me from stage 2A to stage 2B (and practically to stage 3A since my tumor was 2.9 cm) — but when I asked my MO about it yesterday he said it didn’t matter since the cancer in the node was dead and I had a PCR to chemo. While I know he’s technically correct, finding out the node had been positive and my stage was higher than expected really threw me for a loop.
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I can relate, my original plans were surgery, radiation, and hormone therapy. Due to positive nodes, I now have chemo, radiation, and hormone therapy. I am freaking out about chemo to be honest. The port surgery and then side effects of chemo, it all has me so anxious. The jump of stages also rocked my world
Wishing u the best
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AB45 — chemo does suck a lot, but it most likely doesn’t suck as much as you think it will. The word I used was “tolerable” — none of it was pleasant or fun, and some of it was awful — but the awful parts generally didn’t last that long and there was almost always something you could take for the side effects.
If you know which chemo drugs you will be on I recommend reading through some of the monthly chemo forums here to see what other people experienced. The chemo group here (I participated in the July 2020 group) was a life saver for me since several women were on the same chemo regime and we were going through it at the same time.
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AB45: lots of positive vibes sent your way! Chemo isn’t fun...but it’s not as bad as the movies make it. They have so many great drugs to help it not suck as bad. And some people tolerate it very very well! My neighbor is going thru chemo right now, and I’m extremely jealous of her as she has not had any loss of taste, nausea, diarrhea, nothing like I have had...and we were on a lot of the same chemo drugs!
Met with my oncologist today, I will be doing kadcyla for 14 cycles. On one hand I’m glad they have this drug, and I pray I will tolerate it well...on the other hand, I was looking forward to being done with herceptin in August. With any luck I will finish kadcyla, radiation, and reconstruction this year. 2021 will be spent kicking what they found in 2020’s ass!
Also got to see my nurses today, I don’t know what I would do with a different one each time, they’ve become truly good friends. I told them about the struggles the nurses at the other place had with my port. I will be having my first kadcyla infusion at the different place and my nurse here said I could come and have her access the port, (since I plan on coming home once per week during rads, as long as the weather is good, I’ll just plan my trip so that she can access it the day before infusion).
All the talk of staging, and I don’t even know. I’m sure I could dig around and find it...but I know right now it’s not 4, so I’m just going to keep running on the hamster 🐹 wheel of cancer as someone put it in another thread.
Also, found out I get to have the rona shot tomorrow!!!! Happy dance! Very excited to have that weight off my shoulders.
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rmh2744, I had good luck with switching from using cortisone cream to using benadryl cream. Once the rash stopped spreading and being itchy, I switched back to cortisone cream to help the skin heal.
hopeful23, it is good to know there are other options. I made sure to ask for my surgeon's report on my surgery, which listed the antiseptic. If I ever need another surgery, I can tell them which one was used.
Now, I meet with the medical oncologist on 1/19, have a full pelvic ultrasound on 1/20, and meet with the radiation oncologist on 1/21. Busy week next week!
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Hi All and much love and healing!
So....It has been an exhausting and frustrating time dealing with health issues, insurance...finances, loneliness, covid..(like us all!) imaginations, fears,...I need not go on.
We are in a time of uncertainty. It has been difficult from our most precious new humans to our oldest.. Most of us have loved and for of us.. recently lost those close to us. Many are in the midst of dealing with some nasty health situations themselves or live in the fear of "what next"? (Dont get stuck in the WHAT IF'S)!)
Many have not been able to go to a restaurant or go shopping for more than a year. It at times feels like more than a prison term on house arrest...some out of fear...others because the necessity of health protection .Many cannot go out to hug families or give a kind word to a stranger.
If its not bad enough attempting to make life decisions and heal due to comorbidities ( I HATE THAT WORD)...choices before, during and after any surgery..then add ANY complications.....I know how it feels to have a life threating illness and spend almost 3 months ALONE in a hospital room. Feeling like a plague...when no one calls or attempts to contact you. You are invisible.....During this time of the pandemic there are so many people who have become invisible. I endured that sensation years ago. All out hearts must hold them up despite our personal situations.
WE endure, get stronger, wiser and OVERCOME! Sometimes it is those who think they are the weakest can give the greatest strength to someone in need. There is such a need now for all of us to speak up...not in protest but in love! It is hard enough to endure any form of illness. Cancer sucks! Illness sucks...Covid sucks....sometimes life just does!
I find when I am pressed....and pressed....and PRESSED beyond my perceived or believed capabilities....other qualities come out. Fine wine comes from the hardest pressed berries!
2020 was hard for us all...some more than others! Remember we gain strength AS we look outward and lend a helping hand to others!
.This fragmented appearance of the world will not go on forever! Link arms and we will find we are not alone...even though it sure feels like we are separate......LOVE does not separate it knits us together!!!... Love can conquer or divide...it is our choice! Many have been alone for far too long and desire the need to be together!
Reach out and I GUARENTEE there will be someone so unexpected to touch your heart! Send a card...flower or note....anything. There is nothing worse than being alone when you wonder if your life is gone......I DO know that with faith and support....hmmmm....YES...there is life and LOVE beyond ANY present situation!
T.
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Hi guys..anyone know about micropapillary carcinoma with autoimmune zebra generational stuff? Drs and us all are dumbfounded...No direction
Huggs...we sure need them!
T....
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