May 2018 Surgery Support Group
Comments
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Hello my sister Warriors! Just thought I’d check in. I’m 4 weeks out of DMX with reconstruction. After going back and forth on whether I really wanted to finish the reconstruction and a good heart to heart with my DH as well as my PS I decided to give it a chance. I got my first fill on Tuesday. That night was pretty rough but I was given muscle relaxers to take at night and a low dose Valium for during the day. So far they are working pretty well. I get my port on Monday the 11th and my first chemo treatment will be on Tuesday the 12th. While I’m nervous about chemo I’m also ready to get these 8 rounds done!! No radiation so once chemo is done I can get my exchange done and get on with my life!!! Hugs to you all!!
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what’s everyone’s next steps? I meet with my mo for the first time Tuesday and will find out my oncotype number. I feel like no matter what it comes back at they’re going to recommend chemo solely because of my age, 33. I really don’t want chemo! And I know a few people on tamoxifen and the side effects are feel mild to none, isn’t rather just go that way. Big decisions and the file puzzle pieces coming this week
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SPDGirl. The ON Q pump lasted only 5 days. I think it worked fine but it was made of metal and my allergy to metal was rough.
Faithsmom. The is no way I was going to get more pain meds. The doctors in Florida are freaked out and the pharmacies are being fined for the perceived overuse by patients.
New about my pathology report. I had a different type of cancer in my breast than I did in my one node on left side. The doctor took 22 nodes on the left side. I think it was overkill. Only one node had cancer. But in know she has lost 2 patients in the past month and she doesn't won't to leave anything to chance. We bonded and since we are about the same age it is good. The margins of the tumor in my left breast were clear.
Plastic surgeon said everyone looks good. He pulled one drain and only two left. Hopefully next Thursday at that appointment will they come out. I think things will improve once they are gone.
The pain I am having is mostly in my armpits. I've decided it could be the expanders. I am trying a mix of Tynolnol and advil. It seems to take the edge off.
I was able to take a real shower today. It felt good but wore me out.
I can tell you that so far my sense of 'what the crap', is still in place. I still feel like I will wake up and this nightmare will be over.
The breast surgeon wants to put a port in for chemo. I told her to wait and let's see what the Oncotest tells us and than we will see. I see the oncologist again on the 14th. The breast surgeon and Oncologist are friends.
Wishing all of you a speedy recovery.
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Eo2378: that is great news!!!! Congratulations! What oils have you been using for deodarant? I have been diffusing some each day and have been trying to come up with something that will relax my muscles either diffused or topical.
HikingLady:
so sorry to hear you have had to go through this twice! How did you do with Tamoxofin originally? My next step is MO appt in 2 weeks when Oncotype test will be back. Prior to surgery I was told no chemo, no rads unless nodes showed something. Nodes were clear, but my tumor size was expected to be under .5cm and turned out to be .7 which BS said now put me into Oncotype testing and slight chance of potential chemo. I knew in advance that Tamoxifen would be recommended, but I have had so many considerations running through my head.
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SPD Girl: I didn't have any trouble with Tamoxifen; tolerated it just fine. It was when I was ages 45-50, so its perimenopausal side effects were not possible to distinguish from my own perimenopause, which had started several years before. Perhaps that meant more years of hot flashes and those discomforts than I otherwise would have had; I'll never know!
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sll10985: I too am awaiting my oncotype results. My oncologist is hinting at radiation, chemo and hormone therapy. I don’t want any of it! I hear ya on that one.
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SpdGirl...
I have been using melaleuca (tea tree oil), frankincense, and Copaiba. The melaleuca is good for helping kill off any stink (bacteria) of body odor and Frank and Copaiba are supposed to help support good cellular health, and I need all the help I can get in that department
I have also been taking an essential oil "morphine bomb" for pain. It's frankincense, oregano, Marjoram, and Lemongrass in a veggie cap 2-3 times a day. I also have a roller with this oil combo that I'm applying topically. I'm on day 3 with no pain meds (and 1 week post surgery) and I'm feeling amazingly good, no pain or discomfort. I feel like I'm starting get good range of motion back in my arm after the SNB, could be time healing or the oils,but I'll take it! I saw the BS today and she was pleased with how I'm healing and getting around. I've been diffusing lavender, wild orange, vetiver, and Cedarwood and the combo has been helpful with relaxing myself to sleep. I'm told all essential oils are not made the same, and to use caution with the oils I apply topically or use internally, I've been using dōTERRA and so far so good. I've been saying that I'm waiting for the rug to be pulled out from underneath me, because it seems to good to be true that I'm feeling almost 100% a week after a major surgery. Tomorrow will be the true test, I'm having my last 2 drains removed and the wound vac removed. I'm told the wound vac is a bit painful, but I'm going to try the oil combo in a capsule vs my pain meds and see how I manage! What oils have you been using to help with your recovery?
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EO2378 - I have been diffusing Frankincense primarily with occasional extras to give me a little variety. I have trouble swallowing capsules, but I have been adding (Young Living) Frankincense, Copiaba, and Idaho Balsam Fir to juice each day. I have topically put Copiaba on the bottom of my feet, but have been hesitant to know where else to apply topically to get the most relief. I would say my extreme chest tightness is my biggest complaint.
How did everything go at your appointment today????
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Hi;
I see my PS Tues for a fill and have first appt w MO on Wednesday. I'm in Canada and while I'm grateful for the free access to health care I'm frustrated by the wait. I doubt I'll have my Oncotype results on Weds, and am grouchy about waiting another 3 weeks or so for the results. All this waiting is gruelling - turns out I am more of a control freak than I thought. Chalk it up to one of the many lessons in this experience. I've been pretty stoic about the whole 'thing' but my impatience gets the better of me. Was hoping to know next steps next week. If I'm getting chemo I want to plow through it like surgery.
I hope others are finding some zen...
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SpdGirl
I'm told Frank and Copaiba are supposed to be excellent for healthy cellular support and function,so that's awesome to hear you're using both. I was having that same tightness in my chest earlier this week. I was thinking there's no way I can manage to deal with this until my implant exchange surgery! I've felt a huge improvement with this over the past few days. My oil friend told me that "morphine bomb" combo helps reduce inflammation. It makes sense that our bodies are inflamed after such a major surgery. I've been applying topically and also taking in the caps, not taking any pain meds, and I'm feeling almost 100%! I've also been eating very healthy and healing foods. Lots of veggies and protein. I don't know if it's a combination of both diet and the oils that are helping, but I feel great, so I'm definitely going to continue doing what I'm doing. My oil friend suggested that I put 2 drops of frank under my tongue every day, so I've also been doing that. I'll be honest, it's an acquired taste, but I'm open to any suggestions that might keep me cancer free and in good health!
My appointment went well, thanks for asking! I didn't take any pain meds before, but I did take a capsule of the oil combo. I had the wound vac and one of the two drains left removed. I felt ZERO pain or discomfort! I'm a big baby, and have no pain tolerance. My friend had also given me a roller she calls "hot mess" to help with anixtey. I tend to get very anxious with just the thought of possibly having pain, and that didn't happen today. The PS was very pleased with how I'm healing and how well I handled the wound vac removal. He was a bit concerned with my skin being too thin, from the years of weight of my breast, to be viable. Fortunately, the skin is doing better than he'd expected and seems to be very viable. The last drain has to stay until next Friday. Not because of the output, because it's the drain that is going to the TE. Apparently 2 weeks with this drain provides the best results with the aladerm success.
I'm feeling much better now than when I was taking the pain meds. My range of motion has improved drastically in the past few days and the tenderness from the SNB is almost nonexistent. The pain meds made me so fuzzy and tired, so I'm happy to be feeling comfortable and clear minded.
My incision sites aren't very tender. I'm applying my roller right over the incision site when I do dressing changes. Maybe this would be an option for you if you're having difficulty swallowing the pill form? Or possibly frank or Copaiba under the tongue would helpful too?
Looking forward to hearing what you try and if you find any relief from the tightness feeling!
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SpdGirl..
I meant to mention, my PS also gave me the green light to shave my arm pits today! No restrictions with this request!
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Eo2378: I’m so glad things went well for you on this last visit! It looks like we have a similar diagnosis as you had two different types of cancer, one positive and one negative. I’ ll be interested to hear what your oncotype is. Still awaiting results on mine.
Everyone who is having difficulty with chest tightness; I am now on week 3 post MSX with TE. I went on my first hike today. 3 miles. I was nervous. Even so, I woke up in the morning and immediately noticed a relief of a good degree of the tightness. It’s still there. But MUCH less then it has been. I enjoyed a long day of activity. I took just one muscle relaxer the entire day. I go in Monday for a fill, so this relief may be short lived. Nonetheless, I will take it and enjoy the brief reprieve. Those of you, not quite 3 week’s post surgery yet, it gets better!
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Kandyhunt: 22 Nodes and NO painkillers!! That seems almost criminal! I am so sorry!! I can imagine your underarm pain may be a result of the node removal. That is quite a shock to your system. I hope your oncotype comes back soon with good news.
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Kandyhunt- I’d agree the arm pit soreness is from the nodes! I had 5 removed, all on my left side, and my surgeon accessed them through the same incision as my mastectomy. Just this past week the soreness has gone down quite a bit, I’m 2.5 weeks out from surgery. Since I don’t have an incision in my arm pit I know it’s From the nodes.
I also went to the store this morning (first time alone since surgery!) and bought one of those little battery powered shavers you see advertised for your upper lip/face to use in my node arm pit! Itried to shave it and it’s so sensitive! I’ll let you ladies know how that works!!!
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I attempted arm pit shaving today...so much work! I used ReadyAbout's tip of using a mirror and was mostly successful, but the side with the node removal looks like I have no idea what I am doing
It is encouraging to hear that so many of you are getting some relief from the Chest tightness. I am almost at 4 weeks post BMX and last night was the 1st I noticed a bit of relief on my non-node side, but it was super intermittent. It appeared that when I had my arm in certain positions I would notice some relief, but the tightness would return whenever my arm was in normal day to day positions. I am praying that this might be step 1 and more continued relief is on the horizon...
Eo2378 - That is amazing on having the vac/drain removals without pain or discomfort!!!! Way to go!!! I plan on making up some rollers today for topical use.
FaithsMama - was the relief you felt in your chest tightness before or after your hike? I am so glad to hear this news!
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Thanks everyone for sharing next steps -holding hope for positive outcomes for all. I'm especially enjoying the homeopathic resources for pain & healing, as well as the grooming tips (very hairy & “aromatic" arm pits here)!
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SPDgirl: I had 20 nodes removed from my dominant side. The "without drains" exercise sheets (last one came out Thursday) are challenging as I try to regain my full range of motion but range is improving. My arm continues to tingle in my tricep area and feels sensitive to touch - not a shooting pain but a tender, irritated feeling.
Eo2378: If you are ER+ check to see if any of the essential oils are phytoestrogens. Some sources say us ER+ gals should avoid phytoestrogens.
Good luck to all of you. Thanks for being such a source of support. I did not get the hoped for pCR but my residual cancer was greatly reduced. Hoping the oncologist has encouraging words when we meet next week.
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SPDGirl: The relief in my chest was prior to the hike, during the hike and most of the day! I did take a muscle relaxer just prior to the hike. I will say, TODAY, I am back to PRESSURE. Sadly. I DON'T wear a bra. I've always hated them, and I still do. The itch like crazy. I got pretty tired of the post surgery camisole. So, the last several days, maybe a week now. I am braless. I wore a bra on my hike and I will wear one when I go someplace. But, take it off immediately when I get home. I am wondering if this is bad for my healing process? Could be contributing to the pressure?
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I ventured out today for the first time other than a doctor's apppointment. Walked around a parking lot sale and had a quick bite to eat out for dinner. It felt so good to be out! I had to take a two hour nap afterwards but it was worth it. My drains also decreased in the last day. I'm hoping next Thursday they are low enough to be pulled.
I've tried shaving my armpits with an electric razor but it is too sensitive to do so. I'll just be hairy for awhile
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Tomorrow is my last day of hyperbaric oxygen therapy (yay!) and the next day I start PT for cording/webbing in my SNB arm. Did anyone else have cording? Tight cords go from my armpit to below my elbow and I can't straighten my arm or reach for things without significant pain. I did one session of PT last week and one of the cords popped and while it was a little unpleasant, it was nice to have that release. I'm still having nerve pain/hypersensitivity but doctor wouldn't prescribe nerve pain medicine. I have been taking a half dose of Percocet when I wake up and then Advil the rest of the day, but I'm on the verge of tears by late afternoon and I'm not a crier. Wearing no shirt/bra provides instant relief but I can only do that around the house. (: I will see the PS on Friday and if I'm still having the nerve pain, we are going to have a little "Come to Jesus" talk.
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Hi ladies, this is my first post. I had surgery early May and went back to work last week. I felt like it was time to get back to a normal routine. I work part time, but long days. I am still really tired all the time. How is everyone else doing with energy? I also have a 3 and 5 year old so that might have something to do with lack of energy.
I have Tamoxefin in my future and hope I end up being able to tolerate it. I have read that getting vitamin D level and magnesium level to normal may help with decreasing side effects. Does anyone else have any insight on preventing side effects. I just found this thread and it is helpful to read about everyone’s journey
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Faithsmama, I didn't have oncotype testing completed, because I wasn't open to rads or chemo. I figured it wouldn't change my mind so why do it.
TriplePHtow, I was ER-/PR-, but I had read about the phytoestrogen. My understanding is synthetic phytoestrogens should be avoided, and oils are naturally occurring phytoestrogens? However, for those who are positive this is definitely something to consider and do your research just to be on the safe side.
Skiboots42, I was experiencing that same exhaustion prior to surgery. I could have slept all day long and it still wasn't enough to give me a normal energy level. Since surgery, I have noticed a huge improvement with my energy. I've been walking daily, eating foods that naturally increase energy, and resting when I feel tired. I didn't walk yesterday and I noticed that I felt more exhausted than I have in the past week.
ReadyAbout, this is the first time I've heard of the cording. It sounds very uncomfortable. I know how tender I was from the SNB, and I couldn't imagine cording on top of that. Hoping you find some relief from this pain.
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Hello all!
As of this Wednesday I will be 6 weeks post-surgery and wanted to check in. I had my first full week back at work last week and honestly, though my energy was great all week, my body feels worn out. In fact, I feel a little bit like a did some major physical event, which I didn't, and I've been moving slowly. I must also say that I've started using a standing desk at work and I am sure that this is part of it, but I think that the biggest issues is using muscles that I haven't for four-weeks. Secondly, after the extreme tightness I experienced during my radiation set-up appointment, I started doing the post-surgery exercises that were in handout from my doctors office. I found that I was able to do them all without much problem, but I also took a solo airplane trip and did way too much lifting of my carry-on bag, and when I returned I had a throbbing ache from my right shoulder to my elbow.
I finally met with a Physical Therapist who specializes in lymphedema last Monday and she gave me a different set of exercises to do and told me that my surgeon's advice to start walking my hand up a wall once I got home from surgery was a no-no, as they don't want you moving your arm up over your shoulder, and that they have told this to the surgery department before! Thankfully I was only doing it once a day, and I hope that it didn't impact anything too much. I have noticed that my right arm (the one with the 23 missing nodes) has a crook to it when I raise it to the sky and when I try to straighten it out I feel a definite uncomfortable tug. I'm wondering if that is the same feeling that ReadyAbout describes and if that means that I have cording too? My PTs advice with all my exercises was to stop if it hurts, but I will have to ask her if that also applies to the feeling of pulling something. What I have noticed today is the rubber band feeling around the top of my chest (front and back) has returned, although not as tight as it was before. I chalk this up to laying absolutely still with my arm up on a caddy for 20 plus minutes for my first radiation treatment on Friday, but I wondering if others are noticing the same feeling returning even several weeks out from surgery?
For those of you with Mastectomy w/o reconstruction, I have been seeing lots of posts about the use of compression bandages and wondered if you were told to do that? I had a tight surgical bandage that was taped from both sides of my back to the front for 10 days, but had it removed because I developed a horrible itchy rash and terrible sores on my back and have had nothing since. I have since learned that allergy to surgical tape is a thing, even though the ER doc seemed to think it unlikely
Since it was removed I have had very noticeable swelling on both sides, right next to the breast bone, to the point that I have little mini-boobs which I call my fauxbees. At my two week check up my doctor saw this and said that I'm just still swelling and it should eventually (hopefully) subside, but I'm now six weeks and they are as perky as ever. I am also wondering if anyone was told/prescribed anything to help lessen scarring? I'm starting to get to the point where I'm ready to start focusing on things that are less life and death and more vanity, and I was thinking that I probably should start doing something now.Finally, I know that everyone is at different levels of pain management, but for myself I have always tried to take the least amount of medication possible and have been able to just take extra-strength Tylenol for the past four weeks. I was taking 1000 in the morning and 1000 at night, up till last week, mostly because of what I have read about inflammation and the connection to breast cancer https://www.mdvip.com/about-mdvip/blog/connection-between-inflammation-and-breast-cancer, but now I'm more worried about the impact of taking large does of Tylenol for long duration and wondered if anyone else had discussed this with their doctor? I have an appointment on Monday to see my regular doctor for some hearing issues I'm having, and I will definitely ask him, but I always think that is way more helpful to hear what others are being told by their docs.
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- TriplePHtown - I am sorry to hear that your report was not all good news When do you meet with the MO?
- FaithsMama - I am so very sorry to hear that the tightness came back. Do the muscle relaxers help with that at all? I was not prescribed any and have been curious. I too do not wear a bra and haven't been using anything under my loose shirt since surgery. I had tape and dressings for 1 week and that was it. I have only had a few moments of relief here and there on my non node removal side and it is mostly when my arm is in a certain position (like behind my back). Not having noticeable improvement is wearing on me.
- ReadyAbout - is the cording visible? I have not had anyone mention anything to me about the possibility of what to watch for. ☹ I am very sorry to hear about the continued sensitivity.
- SkiBoots42 - I have had low energy for years now, so I haven't been able to tell much of a difference after surgery.
- Missmelissa90 - tomorrow I will be 4 weeks post BMX w/o reconstruction. I have had extreme chest tightness since surgery that has not dissipated enough to be comfortable. That being said, I have Sensory Processing Disorder and I am very sensitive to restriction (why I haven't worn a bra for years) so, the discomfort might more pronounced to me than it truly is. I had tape and bandages for 7 days post surgery and that has been it. I had pain bulbs for a week following surgery that administered local anesthetic to my chest, and altho I had a narcotic available, I was fine with just taking Motrin and Tylenol. I have been having a jaw issue from dental work before surgery so the Motrin was doing double duty and I was taking it pretty regularly. My BS mentioned concern over the continual use of ibuprofen and wanted me to tone it down pretty quickly, but didn't seem to have any concerns with a couple doses of Tylenol each day. Truthfully, however, neither seem to help with the chest tightness, which is what is doing me in. I have not been given any instructions on caring for the incision or scar, but mine is still covered by surgical glue and I have been wondering how that eventually comes off and when.
0 - TriplePHtown - I am sorry to hear that your report was not all good news
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Here is a picture of what cording can look like and it is exactly what my arm looks like. Another term for it is "axillary webbing. Cords in armpit and at inside elbow - a quick test to see if you have cording is to simply raise your arm above your head and the cords should be visible. The PT is not going to be fun but I want my *&$(*%&@ arm back.
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I have a question for those of you with expanders. What size did they put in for you? Mine hold 700ccs. I'm 5'9" and was a 40DD prior to surgery. I have no desire to be that size again. I asked for a full C. Just curious what others have in them.
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Mine hold 500 ccs and my PS said he put in 200 at the time of my surgery. I asked him to go easy; he says he usually puts in 250. I was 36DD before surgery and I'm 5'2." Also, he told me that he tries to match the size of the TE's with the rib cage and build of each woman, as well as trying to match what the woman wants as a final size.
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I was a small B prior to surgery and my expanders hold 350. I’m looking to end up with implants in the 300cc area. I don’t care to be even a little bigger than before and if I end up actually looking smaller I’m ok with that too but at my age I was definitely not ready to go flat! I barely have anything in them, maybe 50cc of air?
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mine are size 500 expanders filled to 400 at surgery and I’ve had one fill of 60, doing another today. My PS can and will overfill the TE up to double if needed. I’m getting close to happy now so I’ll likely stop after this considering I was in pain for 4 days following my first fill. I’m 5’11 and was size small D prior to surgery. While I’d like to be a C since I’m so tall, not sure I’ll be able to get there as my previous cosmetic implants she took out had a shocking 800 CCs on one side and 700 in the other. I had gained some weight since 22, when I first had what were then small Cs put in. Fast forward two kids, ect..guess I was a D.
I’m curious how they will end up looking size wise compared to the TE’s
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ReadyAbout - thank you for the picture of cording. That helps a lot and wow! I am so sorry. I can't imagine the discomfort ☹ does the physical therapist think that all can be resolved?
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