January 2016 Surgeries

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  • BlueHeron
    BlueHeron Member Posts: 154
    edited February 2016

    Balthus, I kind of pursued the OT/PT thing myself. I requested a referral from my BS office and they were happy to give it to me. Then I called around to find a OT or PT with training in lymphedema (the swelling in my armpit is making me so nervous) and scar work, mastectomy, etc. I followed a few leads with phone calls and found this OT who does all this kind of work.

    Sometimes I can't figure out if I'm absolutely right in my concerns and trusting my instincts, or if I'm spiraling off in anxiety and perseveration and my healing is totally normal. Either way, I feel like I have to DO something proactive. I'm just so nervous about chronic issues and lymphedema.

  • DecisionFreak
    DecisionFreak Member Posts: 589
    edited February 2016

    Okay, then, in this case, the majority does not rule. One opinion against going off topic is enough for me. I have started and run some good threads, and I understand the desire and need to stay on topic.

    On topic it is for me.

    I am wondering if anyone on this thread has had home health nursing care post surgery. I am legally disabled and home bound right now, though my health may improve with the breast reduction. I have incisions all the way around my aereoles and then from my aereoles nearly all the way down to my chest. The incisions for breast reduction are way more extensive than for augmentation and maybe for recon but not sure. I told the PS I would see her at the end of March and she made me promise to come in to the clinic right away if something happens.

    I am wondering if I should get my doctor to write orders for a home health nurse to come and check these incisions once a week to make sure they are doing okay. I am also having breathing issues, and I feel I should be monitored for signs of pneumonia since I am not allowed to do much right now. Found out today that my mother has pneumonia and is being moved to the hospital ICU. She is on antibiotics, oxygen, and steroids.

  • DecisionFreak
    DecisionFreak Member Posts: 589
    edited February 2016

    BlueHeron, I have read and followed your posts. My impression is that you are spot on with everything you are doing. The doctors have limited time to think about your case, and you are being your own advocate by getting the second opinion from another RO and asking for OT help with healing and regaining your functionality.

    I think the anxiety and perseveration are common under the circumstances. They are warning signs to push you to action. As long as you dedicate time to relaxation and distraction, I think you are doing the best things you can do for yourself. I wouldn't worry about the occasional tramadol. I am very careful with narcotics and have not taken them after my last two surgeries. Addiction to pain killers is a complex topic. Tramadol does have narcotic properties and I believe it can be habit forming but it does not sound as if you are using it on a chronic basis. If I were taking tramadol or a similar drug, I would be concerned if I felt that I craved the drug or if I wanted to take higher doses than prescribed. You are right to be concerned, though it is very harmful to allow your body to experience chronic pain for very long. Enduring chronic pain can create conditions in the body where any little event can trigger a pain cascade. I have lived with chronic pain since 2003, and it is very difficult to manage once it becomes part of your neurological system. Do see a pain management doctor if you are worried about the tramadol.

  • Katja23
    Katja23 Member Posts: 46
    edited February 2016

    Coming in late here. My lump +SNB was January 20.

    The breast incision has been healing fine and has hardly been painful. The underarm incision continued to be more bothersome, due to how my skin folded, but it's fine now.

    About a week ago I became more aware of an occasional pain under my arm further to the back, almost under my shoulder blade. It's noticable when I bend over and reach for something on the floor or tie my shoes. It is also tender to press against the skin there; I notice it if I lie on that side in bed. At first I thought I had strained a muscle, but after several days, it's not getting better. At my 2-week post-surgery appointment with my surgeon, I didn't have the chance to fully decribe it, because she examined me so quickly and told me to get dressed again, before I could remember to point to it. But she did not have any explanation. (I won't see my surgeon again until after my next mammogram in 10 1/2 months.) Anyone experience anything similar?

  • DecisionFreak
    DecisionFreak Member Posts: 589
    edited February 2016

    I have not experienced anything like what you describe but I would see a physical therapist that specializes in post surgical therapy for cancer patients as soon as possible. Ask your doctor for a referral if necessary.

    The physical therapist can help you in gaining functionality and mobility and give you the information you need to avoid injuring yourself. The physical therapist can also give you the information you need to minimize your risk of lymphedema from lymph node removal.

  • Logang
    Logang Member Posts: 421
    edited February 2016

    DecisionFreak: I am a home health nurse and I have taken care of and educated post mastectomy patients. I think it is a great idea if you are homebound. It is also great for your overall well-being. I usually develop very close relationships with patients, especially when will help with such personal things at very difficult times. Try to focus on some deep breathing exercises to prevent pneumonia!

  • BlueHeron
    BlueHeron Member Posts: 154
    edited February 2016

    thanks for the reinforcement DecisionFreak! It helps to hear I not crazy.

    Katja23, I think I know what you mean. I have pulling and pain along my lateral rib cage. One of my doc friends suggested thrombophlebitis (superficial). Or maybe swelling and adhesions in a tight space. Either way, I'm trying aspirin to anticoagulate, heat, and a technique KateB67 suggested -- after heating, raising arm on affected side and using other hand to massage in circles. It does hurt. I did it yesterday and doing today I think I'm seeing some progress?


  • SVGsurvive
    SVGsurvive Member Posts: 87
    edited February 2016

    Quick note for CoolgrammieNC - as an honorary member of our January group, I know I speak for all in wishing you a successful surgery today. Please let us know how you are doing when you're ready!

  • Moondust
    Moondust Member Posts: 510
    edited February 2016

    I think we need enough off-topic material so that we can get to know each other better. Otherwise it is too clinical, and I get enough of that from all the doctors I've been seeing.

    Grandma3x, very funny about driving the dog :) But I totally understand his reaction. You are getting closer to the golden 10,000 steps! I hope your weather improves soon so you can enjoy getting outside. How are you feeling?

    Katja, my physical therapist friend told me that shoulder pain can occur because we are not using it enough and it "de-stabilizes". Mine aches sometimes in a way that isn't related to the surgical sites. I think gradually increasing your shoulder exercises as more time passes will help. But we do need to wait until the surgery is healed before we start doing too much. If you had the same surgery as me, the surgeon cuts the fascia between the parts of the pec muscle to access the lymph nodes, and that incision has to heal before it is safe to start lifting anything very heavy with that arm. My PT friend said it should be well-healed in 6 weeks. But please follow your doctor's orders as far as how much you are allowed to do.

    DecisionFreak, I think it would be a great idea to get a home health care nurse temporarily. So I guess the first doctor who looked at your mother was right about pneumonia.

    I have a call in to my surgeon's office about what I think is a seroma in the area of the lumpectomy. It does not hurt but seems larger instead of smaller. I'm 3 weeks post-surgery. Probably nothing to worry about, but I want to let them know I've got it.

  • grandma3X
    grandma3X Member Posts: 759
    edited February 2016

    Katja, I also have had pain under my shoulder blade. The massaging that Kate and BlueHeron mentioned seems to help.

    BlueHeron - I had my second PT this morning and I think it's really helping. I also asked about lymphadema, even though I had only 1 lymph node removed. The therapist said that he was a lymphadema specialist and has worked with other mastectomy patients. He did a lot more with my arm than the last PT did on Friday (she showed me how to do exercises to regain range of motion but did not manipulate my arm at all).

    DecisionFreak - Since you live so far from your surgeon, I think having a visiting nurse is an excellent idea! Maybe you could Skype with your doctor while the nurse was there so that you would not have to make so many trips.

    Moondust - thanks for the encouragement with walking! I logged about 9,000 steps yesterday, so getting close! I think one of the best things we can do to prevent a recurrence is to exercise, especially for those of us that are ER positive! I'm not overweight but also not in the best shape. I did put on a few pounds due to depression and stress after my mother died in 2014, and I think that the combination of those two may have contributed to the growth of this tumor. My goal now is not so much to lose weight, but to lose some of the fat and replace it with muscle.

    CoolgrammieNC - sending hugs and healing thoughts your way!


  • DecisionFreak
    DecisionFreak Member Posts: 589
    edited February 2016

    Grandma3X, my breast surgeon said vigorous exercise lowers cancer risk in patients by 30 percent. Go for it! I have asked patoo to visit our site and tell everyone about the fabulous exercise thread.

    My brother says my mother, who has metastatic breast cancer, is wearing a face mask in the ICU and struggling to breathe. I feel as if I have a ton of bricks on my chest. I have been crying on and off today. I don't know if my chest feels this way due to stress or if I am coming down with pneumonia too. I have worked hard to try and assure good medical care for my mother but it seems as if she still did not get the care she needed.

    Yes, I needed to be reminded to breathe. 10 deep breaths an hour.

  • Logang
    Logang Member Posts: 421
    edited February 2016

    DecisionFreak: I am sending prayers for you and your mom!

    I saw this and loved it!

    image

  • DecisionFreak
    DecisionFreak Member Posts: 589
    edited February 2016

    Very nice, Logang. It is a good metaphor for adapting to change.

  • Katja23
    Katja23 Member Posts: 46
    edited February 2016

    Yes, Moondust, perhaps I had tried to lift something too heavy (likely grocery bags) too soon after the surgery.
    Anyway, I have had absolutely full motion of the arm with only occasional minor discomfort at the incision, and I don't feel any pain at all now when I move around my arm up in all directions. I only feel it under my shoulder when I bend and reach down, so it is perhaps some muscle pulling thing in that downward direction.

  • Moondust
    Moondust Member Posts: 510
    edited February 2016

    Katja, you seem to be recovering very well! I have good range of motion too and didn't need pain meds. The first week I felt some pulling if I accidentally raised my arm too high, but at three weeks I can raise my arm all the way overhead. We are lucky to feel good, but we have to make sure we don't start doing too much too soon. Believe me, I am itching to get back to my workouts and weight lifting, but my PT friend convinced me to take it very slowly, both to let everything heal and to avoid lymphedema. Before surgery I could deadlift 100 pounds, overhead press a 30 pound dumbell and do 30 pushups. For the next three weeks I'll be limiting myself to going through some of the motions with no weights, along with a 1 minute straight-arm plank and some leg and ab exercises. Until I understood about exactly what was cut during surgery, I was tempted to pick up the weights again, but now I won't. My friend said if nerves were cut, we might feel no pain but still be doing damage by lifting too heavy.

  • DecisionFreak
    DecisionFreak Member Posts: 589
    edited February 2016

    Hi, everybody, I have been upset due to my mother being in the ICU. She has a big mask on that makes her look like Darth Vader. She cannot breathe without it.

    My DEXA scan showed normal bone stock. I do not have osteoporosis. That means I can try the AI drugs and see if I can tolerate them.

  • virginia123
    virginia123 Member Posts: 21
    edited February 2016

    DecisionFreak - I hope your mother improves soon, so much for you to bear!! Hugs to you.

    Katja and MoonDust - my fellow lumpectomy patients, I too have good range of movement, but my BS used a new technology and inserted a "Biocoil" in my space where the tumor was excised. The purpose of it is to help direct the radiation with a lesser benefit being that it fills the hole and helps with aesthetics and gives the new tissue growth something to hold on to. All sounds good, but the darn thing hurts! I hope this doesn't slow my recovery. I feel a lot of pain around it and also down my arm. I know its nerve related as the skin feels hyper-sensitive. Sounds a little different than your pain Katja. Hopefully just two more weeks until I can play tennis again - my salvation and my sanity restored :)

    I will quit complaining now because I am truly blessed. I have finally gotten a definitive answer on my HER2 and I am negative. It was the last piece of my BC puzzle and now that it is in place, it is definitive I will not need chemo. Radiation for me starting 3/23 and ending 5/6. The Susan G Komen 5K will be held in Richmond on May 7th and I CAN'T WAIT FOR THAT DAY!!!!!

  • SVGsurvive
    SVGsurvive Member Posts: 87
    edited February 2016

    Welcome Katja23 - I've got your date added to the list. I can't believe how many of us there are!!


    **************************************

    I love the walking / exercise / sports discussions here....shows that we're moving through these initial weeks of discomfort and pain, and wanting to regain our lives again.

    virginia123, congrats on not needing chemo!

    DecisionFreak, hang in there. It must be so hard to be so far away from your Mom - I'm glad your brother is there. Good news, however, re: AI clearance - let us know which you end up going on and how you fare.

  • Moondust
    Moondust Member Posts: 510
    edited February 2016

    Virginia, Hooray for no chemo!!!!

    DecisionFreak, so sorry to hear about all your Mom is going through. I hope she will improve. But glad to hear your bones are good!

    SVGSurvive, I know you probably are having a slightly more difficult recovery than the lumpectomy ladies, but hang in there!! Are you feeling okay?

  • DecisionFreak
    DecisionFreak Member Posts: 589
    edited February 2016

    Hi, everybody, to anyone having a difficult time, my thoughts and prayers are with you. I have been back home with my family since last Saturday. My mom is in the ICU of a local hospital. I wanted her family doctor to weigh in on whether or not to try and have my mom transported to a major teaching hospital that provides world class care. The intensivist doctor here in the local hospital ICU says he is doing everything possible for my mother. I told him that I believed him but that the large teaching hospital has access to the most cutting edge medicine and technology and that I did not want my mother to die in the ICU if there is the possibility she could be helped. The family doctor that my mother sees called me and he thinks there is no harm in trying to get my mother in the large teaching hospital 225 miles from here. The social worker at the local hospital was a big heap of negative thinking saying there is a long waiting list and saying my mother is so old the hospital would probably prefer to treat someone younger rather than waste time on an old woman!

  • grandma3X
    grandma3X Member Posts: 759
    edited February 2016
    DecisionFreak - so sorry to hear that your mother is still in ICU.

    4 weeks post op today and feeling good! I was able to sleep last night without any pain meds :) I contacted my BS today to start the ball rolling on my nipple removal.

    Virginia - so glad you do not need chemo!
    Tomorrow I go for my second fill and then have an appointment with the oncologist. Hoping he will put me on an AI right away, even though I don't have the Oncotype score yet. Is this how it's done, or do they wait to see if you need chemo before prescribing AI?

    Moondust - thanks for the encouragement! I'm walking every day and getting in about 4 miles each day (10,000 steps). PT is going well. I had an intern today who was a little more rough with my arm than the other therapists, but it feels ok now.
  • Mominator
    Mominator Member Posts: 1,575
    edited February 2016

    Quick shout outs to:

    CoolgrammieNC: I hope you're home and recovering.

    Stellamaris: Praying for clear margins tomorrow on your re-excision lumpectomy. Third time's the charm, right!!

    Wishing everyone peace and healing.

  • stellamaris
    stellamaris Member Posts: 384
    edited February 2016

    Grandma3x - way to go!! Mominator - thanks for your encouragement. Crossing fingers and toes! Sending best wishes and healing thoughts to everyone facing surgery or recovering. :)

  • Moondust
    Moondust Member Posts: 510
    edited February 2016

    I'm rooting for you and your surgeon, Stellamaris!

  • grandma3X
    grandma3X Member Posts: 759
    edited February 2016
    StellaMaris - I'll also be crossing fingers and toes for you! Sending hugs and well wishes!
  • DecisionFreak
    DecisionFreak Member Posts: 589
    edited February 2016

    stellamaris, ditto from me. I really hope the surgeon gets it all today!

  • woodstock99
    woodstock99 Member Posts: 338
    edited February 2016

    Nurse Practictioner vs Physician Assistant: I need to see my BS & her nurse says she is not available for weeks. I am not happy with how I am feeling or looking. She said I could see her NP or PA. Not sure if difference & if it matters. I feel like I have more swelling around my incisions and that my "mini-boob" to the righted my heart has gotten bigger. I could see the PA tomorrow but BS is not in surgery or the NP next Wed when BS had clinic. Help! Thanks.

  • DecisionFreak
    DecisionFreak Member Posts: 589
    edited February 2016

    I would see the NP if it were me. NPs have extensive nursing training and they are the doctor's right had, and she probably also has specialized experience in cancer patients. I am so sorry Balthus that you are doing poorly. I will be thinking of you.

  • woodstock99
    woodstock99 Member Posts: 338
    edited February 2016

    thanks. Will wait for NP. I think I overdid it going back to work this week. Supposed to be P/T but in the office more like 5-6 hours and then working all hours at home and not sleeping well. Woke up today with congestion and head feeling full so probably now that I am out of "isolation" & back in the world exposed to everyone's germs. My puppy had to have dental surgery Tuesday and it went well but she's almost 8 months and wanting to chew on everything and is not allowed to so since all her toys are hidden she's going after shoes and cords and driving me nuts. Trying to give her meds is a challenge. My DH became very unsympathetic this week for some reason as well. I guess fatigue catching up with him too. Sorry for whining/venting

  • virginia123
    virginia123 Member Posts: 21
    edited February 2016

    Stellamaris - Thinking of you! Hope it went great. You have a great plan AND a great back up plan! Cancer will soon be gone one way or the other. Too cold to do anything else, may as well lay out this weekend and watch movies through a pain pill fog anyway :) We hope we hear from you soon.

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