Lumpectomy Lounge....let's talk!
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Today is my post-op appointment for my re-excision! Hoping to hear those wonderful words that my margins are now HUGE! Then on to rads! Just want to get this show on the road and that one silly posterior margin being <1mm slowed me down...but now, I am on my way! (I hope..lol)
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Hi, ladies. I had a lumpectomy and SNB on my right breast in October 2011. The pre-op procedures the morning of -- mammogram, insertion of radioactive dye and guide wires to help BS locate my deep-set tumor -- were more painful than the LX. I went into surgery, thinking I would have 5 days of the internal radiation through a balloon, then be done with it. I woke up to the news that the BS found micromets in 1 of 3 nodes, so that changed everything. I had 4 rounds of Taxotere/cytoxen, which was pretty awful. I was in a clinical trial, where half the women received higher doses of rads for 15 days while others had the full 30 days. Yet another disappointment: I was randomized into the 30-day group, I burned pretty badly.
But the skin healed nicely and the RO doesn't want to see me for 15months. The BS moved tissue around inside the breast during surgery, so I have only a small indentation. I've had no trouble, altho the SNB scar, directly under my armpit, gets irritated with some bras.
I'm now on Arimidex, which is giving me a fit with joint pain and stiffness. i'm also ina clinical trial testing Metformin, a diabetes drug, on BCwomen WITHOUT diabetes. I'mpretty sure I'm getting the placebo, making me 0/3 for trials or procedures I wanted.
Oh, well. I'm 13 months past my last chemo, and that entire year is starting to seem like a bad dream. I both dread and look forward to the regular mammos and MRI's. My very first mammo, 6 months after surgery, showed something suspicious, and I had a meltdown,. I couldn't even go 6 months wihout something scary. I had a breastMRI and happily, it showed the abnormal tissue was a result of radiation and was benign. But talk about being nervous and mad!!!
It's been quite a journey, but I'm pleased with my choices. You know, 20 years or more ago, radical mastectomies were the norm. We're lucky to have had lumpectomies as an option. It makes recovery so much quicker and changes your life much less than MX, BX and reconstruction.
Good luck to the newbies. You'll do fine, The hardest part is between DX and surgery, k owing you have a tumor and just wanting it out!!! You"ll come to rely heavily on your docs. And make friends with the nurses along the way. Sometimes they're easier to reach than the docs and can answer your questions or make sure the doc gets back to you. If your cancer center has a nurse or patient coordinator, they're a godsend,,1 -
Wavewhisperer, I could not agree with you more about the nurses/patient navigators always being there for you. They have patiently answered every single question I had and I never had to bother calling the doctor. My BS is awesome and she also answers questions when I am with her but calling her...haven't even tried!
I am sorry about your micromets and having to have chemo. So far, only rads and tamox or an AI for me. Today I go for my post op for my re-excision and hoping NOW that my margins are nice and huge (one was <1mm which is why the second lumpie) and now I will be able to move forward with rads.
I am going to get second opinion on pathology just in case they missed something (happens 25-35% of the time I have read) and so will get those before beginning any hormonal tx.
When I plug in my numbers in cancermath.net, it says that taking hormones adds exactly 70 days to my survival. May not be worth it if I don't do well on them. But, the recurrence rate is what it is meant to curb so that is in the neighborhood of 45% reduction so I am hoping that I do well on them!
Glad you are doing well and thanks for stopping by!
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April - I'm ready ready to do a Happy Dance just for you... until then cheering for clear margins:)))
WaveWhisperer - thanks for sharing your journey. Glad that you are doing well and have such a great outlook...we are lucky & very blessed. Hopefully there soon will be a cure and ours will be the last throws of this scourge of a disease...
Good Morning Lumpies...time to shine
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Margins all clear! Now the small one <1mm is 2.5 cm's! Happy dance time!
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Woo Hoo, April!!!!
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Great news, April!
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Yippee April! Can you see ... Happy Dancing with you
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It is 2 years since my lump. surgery....funny thing is my daughter mentioned it to me today ....s;he said Mom did you realize that it was 2 years March 15th for your surgery......;honestly I forgot all about it.......now if the Femara was that easy......not gonna happen.......
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April,
Great news! So happy for you.
Denise51
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April...FANTABULOUS news!!! Yay! Happy Chair dancing going on over here!
Thank you for stopping by and sharing WaveWhisperer...it's great to hear how well people are doing despite a few bumps in the road during treatment. Come back anytime!
Have a great night everyone!
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Great news, April!!!
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Good morning lumpies!
Yippee it's the weekend:)) a break from rads! 7/30 and counting down.
Lisa - your first week of rads completed too:)))
I keep checking my lx massaging with aloe saying soon. Thankful for all the encouragement found here and sharing...makes it all so much more doable...(((hugs)))
Cindy0 -
Had my lumpectomy for right breast and sentinel node biopsy on 3/18. While they were there the PS came in and did a reduction and lift for both breasts, keeping the right side a little larger as the rads will shrink it. (Sounds good in theory, we will see!)
I notice some people said they had cream to numb aureole, I didn't even know they were going to touch the aureole (or I conveniently forgot) until the morning of surgery. After they did the wire localization they gave me ICE PACK to place on nipple/aureole and told me to leave it on there, it would numb the area for the nuclear medicine person to do her injections of the dye and whatever. Worked like a charm! NO PAIN when she did her work.
Woke up very nauseous from anesthesia. Prior to surgery The anesthesiologist had said she would give me a patch for behind my ear after surgery, to do away with nausea. Never happened. Don't know why, maybe because as I was going under I felt a stinging warmth in my arm that "hurt". (Or more like surprised the heck out of me)and I yelled something like bitch! Lol
Home since Tuesday and I had to go back to PS as my one "good breast" (reduction and lift) seemed enlarged and red. No sign of infection, all good. I'm convinced it was one of the post op bras, it is smaller than the other, that caused the issue because the two times I wore it I had a problem.
No heavy lifting two weeks. Careful of the SNB side, should be NO blood pressure readings on that side, could lead to lymphedema! Had to remind the nurses in the hospital, as well as the PS nurse! Advocate for yourselves, not all these people are "in the know". Same thing for blood testing, use the other arm!
Meet with the BS next week, will see if pathology is back. Have cut back pain meds, not happy how the surgical bra is sitting on my stitches, might switch to sports bra, will see if I can hold out til get to BE for opinion.
Anyone know the average wait time til radiation can begin....trying to plan summer with the kiddies, and I'm supposed to be godmother to my new niece , my SIL is trying to be so patient and wait for me to do the christening!
Good luck ladies!
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Hi Pattismiles! I had my re-excision on 3/11 and I meet with the RO on Monday the 25th who will tell me when my mapping appt will be and then I will start. Usually, they like to wait 4-6 weeks after lumpectomy before starting rads to give time for healing. Sometimes 3 weeks is ok if you healed well enough.
I am getting there soon I suspect!
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Patty - plan on starting rads in about 6 weeks. That seems to be the norm unless you have issues with healing.
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Thank you ladies. I just had my little mental recovery bubble burst! Lol. Not your fault! Ok, will have to reassess some things I had in the works. I'm a planner by nature, or is it necessity!
I'm thinking I usually take longer to heal than "normal" people, so suspect I would be at the 6week mark before starting rads. Bringing me close to summer....time to rethink those plans as well.
Lol. Then again, I know there are best case, and worst case scenarios and things like "too much info". Who knows, I'm trying to mentally plan rads when I don't even know if margins were clear or if they have any other plans for me! Better strap myself in and do my best to adapt to this roller coaster!
Thank you for the info!
Pat0 -
If you can do the christening before rads start that might be ideal. I had 3 really good weeks after I was mostly healed from LX and before rads started. Even the first couple of weeks of rads I could have traveled and dressed up. (and the RO even said I could take a long weekend and delay a treatment or two.) By the end of rads, if I couldn't do it in a sloppy sweatshirt, and have nap in between, I couldn't have done it. I was able to work throughout rads, but I worked and slept waking up to watch trashy tv now and again. When we met friends for dinner 15 minutes from home, I napped in the car...
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Oh Cindyl (did you know your name autocorrects to "Disneyland". Lol)
Thank you for sharing that.
I will see what SIL can do. She did mention having a stand in for me if I couldn't handle it. She really is so good trying to work around me and with me.
Glad you are all here to share your experiences.
Pat0 -
Patty, everyone reacts to rads differently. I never had fatigue and only got a bad burn during the last 5 treatments, but I still wore a bra and just used the burn cream the RO gave me. The only 'restriction' was having to have rads every weekday for 6 weeks, which curtailed travel except on weekends. I had rads after chemo, so, compared to that, rads were a breeze.
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First week done and so far it is a 'non-event!" I have some slight darkening but that's it. RMlulu how are you holding up? We're nearly at the same point...hoping well!
Be well everyone!!
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Ahhh Wavewhisperer, you give me hope re the fatigue! Congrats to all who are down one week and counting! I have my first RO appt tomorrow and I am expecting that sometime in April, I will start rads too...want to be done by summer!
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Hi y'all
Patty - Welcome! Oh my how are bubbles get burst and our plans get juggled crazy roller coaster ride...I'm a planner too learning to not hold on so tight ha! Thought I would be in Costa Rica for big surprise Bday for my dad...family canceled we will do a family trip next year...did you hear that cancer.
I had about 7 wks before I started rads which are very doable 7/30. A little fatigue but DH says I'm way to active and a nap never hurt anyone. Hydrate prep skin with aloe exercise relax and laugh. Do what makes your heart happy LOL!
Lisa1637 - yeah we are zapping through rads. Week one done...skin looks good moisturizing front and back...wk2 here we come:))
April485 - thinking of you at your RO appointment tomorrow. Have your list of questions ready to go and make sure you get them answered to your comfort level. You will do great!
Denise - how are you...hope you are healing well and preparing g for rads.
Beautiful Sunday...sunshine and spring is here (((hugs)))
Cindy0 -
Hello Ladies,
I want to say thank you to torigirl for creating the Lumpectomy Lounge. I am soon to have my surgery on Friday, April 12, 2012 and I am so glad and again thankful for those of you who have post their experiences. Thanks to everyone I have my long list of questions for my doctor to make sure I am not in he dark for anything.
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RMlulu and all,
Sorry I have been absent for so long. Wishing all fellow lumpies the best.
I have been waiting and waiting. My lumpectomy healed very well, but because of positive lymph node involvement, I was scheduled for chemo. I had a bone scan which turned out well, but an additional CT scan showed enlarged adrenal gland and uterus. Adrenal B9, but now I am waiting for the results of a uterine biopsy. I was mentally prepared for the chemo, and have had a port implanted (more painful than the lumpectomy) as well. Now the waiting is killing me.
If the uterine biopsy brings bad news, I will have to have a hysterectomy and chemo will be delayed 3 more weeks minimum. If the news is good, chemo will start immediately.
My best friend says that I look too good to have all of this stuff wrong with me. I also feel well physically- not so well mentally. Worrying that it is downhill from here, but trying to remain positive.
Hugs to all.
Denise51
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Denise51 - Oh my, so sorry that you are facing so many more challenges ugh this cancer:((
So sneaky, but glad you are finding out just what you are up against so you will receive the best treatment plan...nothing overlooked.
Yeah the lx is healing well and you have your port ready. Will keep fingers and toes cross for B9 results from uterine biopsy.
Sending calming positive thoughts your way (((hugs)))
Cindy0 -
Thinking of you Denise! xo
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Thanks for sharing your experiences. I have been following a few boards while I waited for the results of my BRCA testing....came back negative! In my eyes narrowed down my options and I decided on lumpectomy with SN removal. So glad I found this thread. I was only finding women who opted for mx or bmx. BS presented all options to me and is confident lump/rads is a good option for me. Scheduled surgery for April 4th. My question is....I have not met an oncologist yet. BS says I will do so after tumor is analyzed. Is this standard...normal? I am trying to take one step at a time but want to also be proactive in my treatment.
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Not sure how they do it in your neck of the woods, but back here in the Philly suburbs I met with an MO, and my RO before I had surgery........my BS set it all up for me......I did not have to do anything......I was at a Regional cancer Center, ;not sure if that makes a difference............even the pathology was done right there, my specimens never left the hospital......the only one that was sent out was the oncotype test...........maybe the other ladies can tell you their experience......hugs.
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Hi,
I am in Rhode Island and in my case I met with the BS first. Before the surgery I met with the radiation oncologist. I was told I would meet with the medical oncologist after surgery. Lumpectomy went fine, but some positive lymph nodes. When I then met with the medical oncologist she had reviewed the pathology report and discussed treatment options - in my case, chemo was now recommended followed by radiation. I guess the medical oncologist can't really do anything before the pathology report is in. So, in answer to your question, seeing the MO after surgery is probably routine in many places.
Denise51
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