Lumpectomy Lounge....let's talk!
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Schoolmom....this 2nd for sharing the great news about you CT. I am joining in on the happy dance.
Steph. How a tech doing after your surgery?0 -
Schoolmom - Yippee Happy Dance! All Clear:))
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Yay Schoolmom!!! Yay to clear reports! This is such a victory and makes us all so happy for you! Blessings!!
Well friends, I made it to Omaha to watch my son pitch in front of all of the scouts. He is young (15), but the exposure is great for him. I am only two weeks post op from the 2 surgeries, but I wouldn't have missed this for the world. All of the walking around (as people do on vacation) has been tough, but I am taking my meds in a timely manner and icing and wrapping at night. Last night the pain was horrible and I couldn't help but wince and cry. My husband just held me and said, "I'm so sorry honey. I promise it will get better." He did and said everything right. People don't seem to understand why I am not healed yet. I'm realizing that I may not be able to return to work by mid July as planned. I can barely raise my arm over my head or touch the skin under my armpit. With clothes on we all look "normal" don't we? No one could ever know the raw scars we are walking around with. I am curious about the radiation that I will be receiving. How will it affect me and such. I will find out soon enough.
We truly all are warriors. I respect each one of you and the journey that you are on.
Peace and love to you all,
XOXOXOXO
Laurie0 -
Laurie,
Your story brought tear to my eyes....You are correct in the assumption that others think you should be healed...It has been 20 months since my 2 surgeries, and I know how you feel. Somedays are good some so-so, some just plain rotten...We are strong and can rise above them though. Sometimes, after this type of surgery, our emotional coping leaves a lot to be desired, I know for a while I could just be sitting here at the computer and all of a sudden the tears would just start running... no particular reason. I have found the little book called "After Breast Cancer: by Hester Hill Schnipper informative and quite a bit of help in this recovery phase. She is a 2 time survivor of BC and also a therapist. I ordered it from Amazon, and I think it was something like $9.00.
You have been on a emotional and now on a physical rollercoaster. Glad you too have a supportive husband. Mine was a rock for me, yet a soft place to fall when I needed it..
Good luck girlfriend.
Vickie
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Hi Laurie - Glad you were able to make it to your son's games and watch the arm:)
Do not be so hard on yourself or discouraged. Our bodies are all different and so is our healing.
)your hubby saying and doing and just being there for you!
I babied my arm for weeks and rads was my 1st time to raise my arm. Yes, I protected arm for months...did not want LE. Just in the past few weeks have I begun to exercise my arm...going slow. I want to play tennis and kayak...but not going to rush and hurt myself.
Before rads I used neosporin and miaderm/aloe 2X a day. My scars looked good.
Rads does not hurt...it is more mental and the daily grind of showing up and getting on the table. Check out the beginning of 2013 Spring Rads & then Summer Rads.
Make your list of questions and concerns and ask your RO. Your team wants rads to go well for you so ask ask ask. Breathing and mediation prior to help you relax prior is good.
Light of His Presence healing your body:)
Yes, with clothes, hair, makeup our scars don't show and we don't look like shell shocked warriors...adjusting to our new normal. Chin up it will get better....promise brave warrior
(((Hugs)))
Cindy0 -
Laurie,like you ,i had my lumpectomy surgery on May14,and my arm was just like yours.Im into my second week of lemp therapy.Three days a week.Yesterday she put the bandage on,and i think its too tight.Will see her tomorrow..tg.Tues.i see a chemo dr.to set up a plan for me..im scared to pieces,but i know i have too.Take care,and i really do know how you feel.I see we are not alone...
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Thank you dear Cindy. Thank you for everything. XOXOXOXOX
Miss Vickie, thank you too. Your note made me cry....but with happiness. You said it all so perfectly. It is so healing to be validated and understood by all of you.
I am so very grateful to all of you. Of all of the boards I could have chosen from to follow, I found this one early in my journey. I KNOW that God guided me to all of you.
Sweet dreams friends,
XOXOXOXO
Laurie0 -
Thank you kayezzy66! I will pray for you and gain strength knowing we are walking beside each other on this journey.
Xoxoxox0 -
Laurie: we all heal differently. Don't beat yourself up for not being healed to where you thought you should be. (Just guessing here, but) the pain you felt was probably nothing next to the joy you received in watching your son pitch. The pain from your over exertion will last hours, or maybe days, but the pain from not seeing your son pitch would have lasted forever. I do want to suggest to you physical therapy. When I had my lumpectomy last June, I healed quickly, but the pain in my arm persisted until I finally gave in and went to pt. (9 months later) it made a world of difference, and I sooooo wish I had done it sooner!
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Elkatho: I am one of the lucky ones. I am doing VERY well. Still sleeping in the recliner, and still walking like an old lady (hunched over), but haven't had any narcotics since early yesterday am. I had my first lone shower today (with mom close by in case I needed anything) and I THANK GOD for helping man invent the 40 gallon hot water tank! 😊 Soooo lovely to feel clean. I even shaved my legs! I have a really good support group that probably wants to sit on me to keep me from over-doing, but I am ready! My parents are going home for a few days, which will probably give my out of town hubby fits, but I have promised to behave myself, at least until my doctor's appt next week.
Anyway, as you can see: I am healing very fast, and am very grateful for it!0 -
Thank you Steph. You are a very special woman and your strength shines through! What an inspiration you are! I'm sorry you ended up having to have a MX after what you went through last year.
You are very right about my son. The physical pain of the surgeries would be nothing to the years of regret at missing out on my son's experience. I told people that I wouldn't miss it no matter what and I meant it.
Thanks to all of you for sharing your experiences here.
Love and light to all of you.
XOXOXOXO
Laurie0 -
Yaaah Steph, so happy for you
Thanks for the update.0 -
Laurie, just read your most recent post, although I have not had the chance to read your history, I totally agree with you-we are warriors! and yes, noone except probably our husbands have seen our battlescars. I pray you will heal quickly. Keep fighting on!
from a fellow warrior
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Hi ladies....after lumpectomy and re-excision and radiation, I'm kind of hesitating for some reason to start arimidex (feeling like 10 years could equal taking it for life! Ha.) Finished radiation May 16th, took time for a vacation, and waiting to feel kind of normal following the radiation before starting meds, but could just be procrastination, you think? I've been disappointed that all the various doctors don't tell you the possible or probable healing path that will be happening. My lumpectomy site is still hard, red, itchy, some pain, etc. A month ago went back to surgeon to have lump drained (that was fun), so it's a bit smaller, but mostly the same. So my concern is, what is normal in the healing process? And is this any excuse for not starting the meds? I'd love advice.
good thoughts for us all
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Pamalams - A rough 6 months...that none of us saw coming. Sorry that yours has been so difficult and filled with disappointment:(
Guess Im a lucky one...had time to form an excellent team and while I have challenge them at times and been out right 'not going to do that'...I know that they have my best interests at heart. And that is why I chose them.
Im a reader...engineer...so I need to understand. Just completed AnitCancer - most excellent and now in the heart of After Breast Cancer: A Common Sense Guide to Life After Treatment. A new normal...getting my life back what does it mean how do I do that, is there a right, a wrong...help. I have found it most helpful and have asked my husband to read parts that hit a nerve so he can understand better where my head is at this time.
Yes, I am humbled and grateful by this journey. My margins were clear, but not the depth BS wanted by the chest wall, my skin did excellent in Rads...thanks to 2.5% hyrdocortizone and emu oil which I used for 4 weeks post rads...and still baby the girl. I had a major confrontation BP 143/90 anxiety attack in MOs office on HT! Told him no way no how...but after a vacation from active treatment, reading, and soul searching...I did fill my RX and GULP did take my tiny white pill...Aromasin! Just completed wk 3 all good:)MO said it would be a see how it goes and I could change at any time...no pressure so Im trying.
Also determined that if I was going to take that tiny white pill (3-5yrs), I was going to pound my bones on the pavement, lift weights with due caution, modify my diet, improve my terrain, and embrace many of the intergrated services offered at my cancer center. Working because my endorphins are high:)
I know this is a journey of odds, a crap shot, but cancer is not going to rob me of enjoying the gift of living well meaningful. So Im thankful for today and desire to live each and everyday fully.
To Life (((hugs)))
Cindy
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Thanks RMlulu for the kind reply. Guess I'll mark my calendar, June 26th, the start of AI's. And I see now that I'm not babying Lefty nearly enough. Actually, accidentally got a bit of a sun burn thru clothing the other day, so will use 50 sunblock also. Thanks for the book referrals, as I have a tendancy to "put things behind me" to a fault. Good luck to you, and maybe I'll check in with you in a few months.....
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Thank you Nissi! Love and peace to you too!
pamalams-I wondering about passing on the Arimidex too. I will cross that bridge when I come to it I guess. Excellent question about the healing process. All of the my non-cancer friends can't seem to understand why with "just a lumpectomy" (wow...."JUST") that I did not bounce right back. I am three weeks post op from the second of my two lumpies and I am not even CLOSE to being healed. I still ice pack at least twice a day and I have the other things you spoke about. My skin is SO tender to the touch and it feels like it's been hit with a baseball bat. I look every day for the signs of infection because it FEELS like it should LOOK so much worse! Thankfully, there are no signs of infection. If I try to raise my arm above my head, I feel pulling and discomfort. I have yet to begin radiation and I am a bit nervous on how that will affect me as I seem to have had a rocky time so far. I will deal with it, I'm just venting.
I guess my point here is, is that there is no clear cut answer on recovery. We all run our own race. I wish there were black and white answers, but BC just seems to be an all around "grey area."
My love and hugs to all of you,
XOXOXOXO
Laurie
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Just had to share that I had my lumpectomy and got the final path report yesterday. Clear margins and no node involvement. Yay! I am so happy I did the lumpectomy instead of the mastectomy. Despite a dip where my tumor was, it looks good - almost the same as the other breast.
Yay. I go back to work Monday, when my cancation (cancer + vacation) will end. Boo. Haha.
I still have pain when I move my arm a certain direction from the node biopsy. Did you gals' go away with time?
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Hi Lumpies
Yippee! GlobalGirlyGirl - Happy Dancing:))) twist and shout! All clear...Ooo who...
Pamper yourself and be kind to your arm...give it time. Follow the LE booklet advice your BS has in his office or use the Havard School of Medicine book on exercising after BC surgery...different exercises for each procedure...excellent
No over head stuff no real girlie girl purse either...use a coin purse..don't overdo:)
Yes, my lx&snd is still tender...puffy,swollen, but better each day...rom is improving slowly...I'll take steady and slow because I want to play...tennis, kayaking...soon.
Laurie - yes, our bodies are amazing, but they have their limits and heal differently. Be special take good care of yourself...don't push. This has been a major assault to body and mind. Breathe, it will get better.
I took a 6 wk break to heal before rads and made it a no c zone...really off limits...just focus on today...grateful for today. Did not get ahead of myself...did not want to do 40yrs walking around a mountain to place that should only take 11 days...exodus...ya get the idea...otherwise grumble, fear, doubt, depression get the enter of you...stay focus on today:)
Tx vacations help regroup recoup and give strength for each step:)
Pamalams - Best Wises for healing and moving forward in HT! Happy reading and hope to hear you have a great summer:)
(((Lumpies)))
Cindy0 -
Fellow lumpies...
I am back...finally...
It's been a crazy couple of months with a lot of happiness, but some sadness as well...
We sold our house in Oklahoma and I went to my dad's in Omaha to spend some time...While in Omaha, our house in CO was put up for sale and we finally got an offer on that as well...
I had 2 sisters give birth within the time I was gone....one in Tennessee and one in Oklahoma...We were actually at the hospital when the E5 hit Moore, OK and we were about 15 miles north of it all... The devastation was horrible, but the people of Oklahoma are amazing and will come back as strong as ever...Then, I was still in OK when the other E5 hit in a more unpopulated area of OK...so thankful that it wasn't near any big cities...
I also found out that my baby brother, who is 32 was diagnosed with testicular cancer. F*&K CANCER! He had surgery and is now currently going through chemo treatments. He has one down and 3 to go, so I will be going out there soon to help out in any way I can. His second tx was delayed a week because his WBC was low...so I would appreciate any prayers anyone can say for him...
Hubby is still deployed (been gone since December), but I will see him in July for his midtour break for 2 whole weeks, so I'm really excited about that!
I took the time to read over the last 10 pages of this thread and am just thrilled that you are all making this a thread that is compassionate to every one. I am humbled at the generosity of everyone...
RMlulu---You are an angel...thank you for coming back so often and keeping the thread bumped and being such an incredible person to everyone that comes this way.
Me? Well, I don't have another appt until September, when I will just go in for bloodwork and a mammogram of my "bad" boobie...I"m not nervous yet, but as it gets closer, I'll start to freak out a little...
Honestly, with everything going on lately, I haven't had that much time to think about anything...although, I have been keeping you all in my nightly prayers...
I pray you are all doing well..recovering nicely, having minimal side effects with treatments and hormonal therapies and just taking the time to be good to yourselves.
Much love and hugs to all you lumpies!
Tori
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(((ToriGirl))) - Welcome home! We've missed you and glad to hear from you:)
Wow, what challenges and what grace and mercy...your family is so fortunate to have you near during the good...ahh babies...and bad...£#*€ cancer.
Yippee, July is almost here. Heart pounding anticipation of hubbies return...enjoy:)))
Sending happy thoughts with lots of smiles. We're in your pocket and you are in our prayers!
(((Cindy)))0 -
Globalgirly, everyone heals differently. Me, I heal very fast, but 9 months after my lumpectomy in 2012, I finally went to PT for a pain in the back of my arm. Seven visits later, I was as good as new. So, my suggestion is, give it 6-8 weeks, make sure you are physically healed, and if you still hurt get a referral for PT.
Good luck!0 -
Hi, I had my lumpectomy in Oct 2012 and now I am having a burning pain almost constant, to the right of the nipple and above the incision. Have any of you ladies experienced such a pain. I don't feel anything unusual but it sure hurts. I go to my ObGyn on July 8 so I will mention it, 1st mammo not until Aug.
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Never had anything like that. My dr. ordered a follow up mammo six months after surgery on my surgical side. If I were you, I'd ask your gyn to order one. I'm sure it's probably nothing, but why chance it?
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Loral,
I would encourage you to have one of your doctors order a diagnostic mammogram. It could give you peace of mind... I see both my RO and MO every 6 months and they always have me get a diagnostic mammo first on the "bad boob", and every other time regular mammo on the "good Boob".
When I have had problems in between these appointments I see my PCP. Had to have aspirations done twice. Been fine now...The seroma was identified via and ultrasound. 2nd aspiration was done by radiologist with US guidence..
I certainly hope you soon feel better..
Vickie
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Thanks Vickie and Steph...I have a diagnostic mammogram scheduled in Aug. , that will be my first mammo. since surgery, I don't know why they didn't want me to have a 6month mammo. but BS gave me a prescription for my yearly mammo in Aug. I see my MO every 3 months he checks blood, and does a breast exam, that's about it. I see my BS every 6months. I did not have radiation or chemo my choice. Hopefully it's just nerve pain....
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I went to my annual well woman yesterday. My tumor was found last Aug in a routine mammogram but was just about 1 cm. She ordered a diagnostic mammogram and breast ultrasound as well as a colonoscopy so will have that about 5 years after the last one. I have had 2 CT scans since then and a thryoid ultrasound/biopsy so I think I am covered. My onc ordered another CT in 3 mos. It is never ending. The good thing is I am at 100 % on my insurance so I say go ahead and order anything.
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Hi ladies,
I am sending all of my love and prayers to you.
I had my first MO appointment the other day. This the letter that I have drawn up since that appointment. I thought you all would find my experience interesting. Here it is:
This is to document my experience with my first doctor’s appointment with Dr. K. It was my first time as his patient and the following was my experience. I believe it was harsh enough that he and others should be made aware of how he treated me and how he made me feel.
I would like to preface this documentation by saying that as a fairly new cancer patient, it has been quite a journey. When you are told that you have cancer, no matter how small or what stage it is, it is devastating and scary. There is so very much that a patient has to learn and go through. We need the help and care of our medical staff to guide us through the journey. Up to this point, I have had the most amazing care. I have encountered the most caring and educated doctors and nurses. Until I met Dr. K. The following was my experience:
On Friday 6/28/13 Dr. K entered the room without shaking our hands or greeting us. He pointed to his name on his jacket and said, “This is my name.” He repeated the action. He went to the computer and without looking at us he said, “Why are you here?” I was shocked, but I said, “Because I have Breast Cancer.” He said, “What kind?” I was a little taken aback as I didn’t understand why he didn’t know that answer. I said, “DCIS.” He said, “Where?” I said, “My right breast.” He said, “Well you know that that is not really cancer. That is a pre-cancer and so you are lucky.” I was shocked that he would approach me that way. I said, “Yes, I am lucky.” He then said, “So what are you looking for me to do for you? You don’t have invasive cancer and so you won’t be getting chemo. What is it that you want me to do?” NOW I was really stunned. I said, “Isn’t that what YOU are supposed to tell ME? I was sent to you for the next step in my treatment.” He looked annoyed and said, “Who sent you here?” I felt like I was in the Twilight Zone. I said, “Dr. B. My breast surgeon.” He said, “Well, he should just take it out.” At this point I raised my voice a bit and said, “He did. I have had two Lumpectomies in the past three weeks that did not clear my margins and THAT is why I am here!” I looked at my husband all exasperated. HOW could this doctor NOT know anything about me? The appointment got worse. I asked him what my Oncotype Score was. (I had asked Dr. B and he told me that the medical oncologist would give me that information.) Dr. K replied, “You don’t have invasive cancer. We don’t do Oncotype Scores on people like you.” On people like me? I know that is not true and so this made me very angry. He was very dismissive and insensitive. My husband then patiently detailed to him what I had been through in the month previous. My husband then asked him, “What do we do from here? What is your part in her future treatment?” Dr. K said, “I give you the little white pill.” WHAT?!?!?!?!?!? So my husband says, “Are you referring to Arimidex?” Dr. K said, “No, Tamoxifen.” At that point I lost it. I said, “Why would you give me Tamoxifen if I had a hysterectomy 15 years ago! You didn’t research anything about me!” His next statement blew me out of the water. He replied, “Because you still have your ovaries.” I yelled at him exasperated, “NO I DON’T! ARE YOU KIDDING ME? HOW DO YOU KNOW? YOU NEVER EVEN ASKED ME!! YOU DIDN’T EVEN HAVE THE COURTESY TO REVIEW MY CHART BEFORE YOU WALKED IN HERE! I DO NOT HAVE ANY OVARIES AND THEREFORE TAMOXIFEN DOES NOT APPLY!!” He looked at me with no emotion, shrugged his shoulders and said, “Ok.” I said, “Okay what?” He said, “Since you know everything, I guess you don’t need me.” At that point, my husband took over and calmly and slowly said, “We were referred to you. I’m assuming we wouldn’t be if that were not the next step in her treatment. What is supposed to happen with this appointment? Is she supposed to get a blood test?” Dr. K replied, “Yes.” My husband then said, “Can you explain the Arimidex a little? Can you tell us what benefit it would be to her to take it? Does she need to take it for five years or less? In your opinion, would it help her?” Again Dr. K shrugged his shoulders and said, “It’s totally up to her. It’s preventative to help ensure the DCIS does not return.” My husband dug deeper. He asked, “Ok….what percentage do they say it would help her?” Dr. K said, “It gives her a 25% extra chance of non-reoccurrence.” My husband said, “Okay….so in YOUR opinion…should she take it?” Dr. K replied, “It’s up to her.” We were so frustrated at this point. I said to him, “So, once I have the radiation, how do we know that the cancer is gone?” He said, “It will be.” I exhaled and said, “I’m asking you HOW WE WILL KNOW. “ He said, “You will ask your Radiology Oncologist.” I said, “But how will they know? If they aren’t drawing my blood and there is no pathology because there is no further surgery, how will they know that the radiation worked?” He just stared at me. I continued, “Is this why I am here with you? Is that how this works? You check my cancer markers before radiation and then after?” He again looked at me with no emotion and said, “Yes.” I felt like we had to drag the answers out of him. I said, “Do I get the blood test today? Do I do it here?” He said, “No, you go to Quest. Now, I will see you again in two weeks. You will come on 7/25.” I sat silent. He got up and walked out.
I can tell you that I fell apart in the parking lot. I have never been made to feel so insignificant and dismissed. He treated me as if because I don’t have invasive cancer that I was wasting his time. He was uninformed, insulting and insensitive. I NEVER want another patient to ever have to be treated that way ever again. I will not return as his patient. He is a doctor that is dealing with a highly delicate disease. Cancer changes people’s lives, especially when they are going through the process. Cancer patients deserve compassion, kindness and answers. He is void of that.
Sincerely,
Laurie Parr
Ladies, thank you for letting me vent. I will be making sure that his office gets my documentation and I will be assigned a new MO.
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Laurie -
I just wanted to say how sorry I am that you had such a horrible experience. I received much the same information from my MO (no oncotype done on DCIS and/or such a small invasion; whether or not to take Tamoxifen would be pretty much up to me; no blood work done on cancer markers since the possibility of invasion was so low, etc.) but it was given in a much more compassionate manner by someone who had clearly read my file. He did ask me to explain why I was there when I came in, but I had the impression it was more to assess my understanding of the situation than because he didn't do his homework, so very similar information but a completely different experience!
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About the post-surgery mammogram schedule, I recently had my first one on the "bad" boob, 6 months after surgery, and will be repeating that every 6 months for 2 years switching to yearly afterwards. The other boob will be scanned yearly, so at every other of the 6 month appointments. Where I go, if it is a short-term follow-up (which 6 months counts as) it is automatically a diagnostic, not a screening mammo.
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