Lumpectomy Lounge....let's talk!
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Thanks so much LaurieParr. It is so nice to have a place where everyone can relate to what I am going through. Thanks again and I hope you are feeling better. I'm sending you get well wishes and prayers.
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Laurie, you asked about Arimidex. I've been on it a year and, like many others, have joint pain and stiffness, from my fingers to knees and shoulders. From your photo, you look young, so maybe you're still a candidate for Tamoxifen??
Radiation was no big deal, easy to get through. If you do end up on Arimidex or another of the hormanals, there are several threads devoted to those, which I monitor almost daily.
Good luck!0 -
Havel:
I am so sorry. That is terrible: give you good news and then take it away.
Schoolmarm: I was talking about the lymphedema massage techniques to move fluid from the area which isn't draining to the other side. You have to open up the side which isn't damaged first so the fluid will have somewhere to go.
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Thank you WaveWhisperer,
I am 45, but had a total hysterectomy when I was 30, so Tamoxifen wouldn't be for me. Thank you so much for your response.
XOXOXOX
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havel: big big hugs coming your way, since words will never suffice.
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helped with teaching me manual techniques, which are very simple, but you must be careful depending on your age. After age 60, you don't want to rub your neck
Manual Lymphatic Drainage ( aka MLD) does indeed involve an area by the neck, but there is not a rubbing or what one would normally think of as massage by any means. MLD has the lightest touch imaginable. In fact, it would be contraindicated to 'rub' into the skin of one had LE or a high LE (lymphedema ) risk.For more info, see.
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purple32:
Sorry for using the wrong word, "rub." I felt the info about staying away from the neck was more important. And having a licensed occupational therapist would definitely be a plus since she/he can teach you how to properly do it. I didn't think I deserved the tone; just trying to be helpful.
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Della
I'm very sorry you thought I had a tone. Please let me assure you, I did not. Any " bolds' or anything like that is strictly for emphasis. I am very passionate about LE and the correct techniques because I have it. It is chronic and devastating and we are all at risk . It's very upsetting.
As for the neck area, this is in fact, an area normally emphasized in MLD, but again- the touch is so very light, it is not generally considered harmful. A LANA certified LE therapist is usually the best one to teach the method.Again, I apologize for how my post might have come off. I truly did not intend it as a tone toward you or anyone else for that matter.
We all have enough garbage on our plates- I have NO desire to add to the heap.
Best Wishes.0 -
Purple: Thanks. No harm, no foul.
Some people think that the manual drainage is all hoakum and it has made me defensive when I shouldn't be, but it is very effective.
You are correct; it is a light touch, but I can't seem to get that through my head. I go at everything in life "hell for leather." It seems like if a little helps, a lot should really help, but that's not the case. I need to get that through MY head, soft touch.
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I have an apppointment Wednesday with a lymphedema therapist ...thanks for the info.My arm hurts so bad..nobody told me about this.Now all i hear is excerise ,and use it...noone should have to deal with this...just saying....
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this.Now all i hear is excerise ,and use it...noone
SO glad you have an appt! Exercise is good or LE , but must be done very gradually and with some cautions. On the step up speak out website , there is a fully comprehensive doc there about exercise. Please check it our and let your LE therapist see it as well.Della
I do understand ! I too get defensive when it comes to LE.
Peace ~
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I got good news today! My cancer markers are good and my estradiol levels have gone from 180 to 91. Boo yaaaa!
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YAY Della! Wonderful!!!
Ok ladies...just laying around 6 days post surgery and I just found my part of my pathology reports online. Says margins are "clear, but close". Give it to me straight.....what are my odds of having a re-do?
Node was clear....no Oncotype scores or anything yet.
Thanks girls...love to all.
XOXOXOX
Laurie
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Hi Laurie -
Yeah clear nodes! Not so sure about the close margins. My BS said that he wants 0.5 cm to 1.0 cm for margins. But my t was deep and BS was only able to get 0.4 cm interior margin against chest wall...rads for sure.
Where is your margin close? Chest wall, nipple, skin! Call and discuss with BS so issues is off your mine. Path report comes in slowly a piece at a time...breathe.
Good BS go in for clear margins all the time....use the same incision so no need for wire loco!
Focus on blessings of today...trusting your angles to carry you through!
(((Hugs)))
Cindy0 -
Yay Della!
Good for you !!!!! Any idea of how the estradiol levels changed so much?
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Hi Miss Cindy,
My margins are .01
They just changed my appointment to 6/5, so I get to talk to BS sooner. Yay!
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Yay, Wednesday will be here in a blink!
God is good and He is BIGGER than any of our margins!
Standing with you:)))0 -
Last year, after lumpectomy, my margins were close. My BS scheduled a reexcision, but before I could have the surgery a medical paper was released that basically confirmed what doctors had believed for a while: close margins are as effective as clean margins. That said, I don't remember what the margins were.
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Ladies- I just wanted to say a big thank you to all of you. Just listening to everybody's stories has helped me stay strong. I had been struggling with which surgery to choose, my BS is confident she could get everything out with a lumpectomy and I finally decided that was the best choice for me. Friends and family however are not very supportive. They all say,take it all off to be safe and never have to worry again, like the famous people do. I just don't want to have to choose such a drastic option unless that is my only choice, I so admire those that are brave enough to make that decision. I am on week 8 of 12 Taxol/Herceptin, I expect to have a lumpectomy/auxillary node dissection in early August.(I have 1 known node involvement and 2 tumors near nipple 3cm/1cm). I will follow all of your progress and jump in your pockets for support
and know where to come when my surgery time is near. We are warriors and will win this battle. Thank you again for your insight and honesty.0 -
Michelle, you have to make the decision that is right for you. Forget the advice and pressures from friends. If your BS feels a lumpectomy plus rads is right for you, that's great. It's no picnic, but many of my BC sisters have had BMX's and reconstruction, and, 1.5 years later, they're still having surgeries for nipples, etc. Many have had complications or aren't really happy with their results. AND having both breasts lopped off does NOT mean you never have to worry again. Your chances of a recurrence in the breast are minimal but that doesn't mean it couldn't show up somewhere else.
Hope all goes well.0 -
Michelle - I agree: go with the least drastic option you can, based on your surgeon's recommendation and your gut. You might ask your surgeon if he participates in any kind of "tumor conference". If she does, it's like getting a second opinion without having to find one, go to another office, wait for their exam, etc. If she does, you have more ammunition when dealing with your family and friends: "all my doctors recommend the lumpectomy" is a little stronger for you to stand on. If not, just say "this is what my surgeon recommends, and I trust her".
If that doesn't work, ignore them. You don't need to spend your energy arguing with your family.
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Michelle68 - welcome and we are so glad you have found the Lumpies! We will be in your pocket during your time in chemo land. (((Squeeze)))
Week 8 of 12 you are almost through and your c getting smaller and smaller each day. Hang in there brave warrior!
Yes, the choices we face
, but we are fortunate to live in a time of choices! Medicine is improving and thus we each are able to make the best informed choice at the time.
And it is a personal decision...we choose! There is power in our choices.
Sending you calm confident thoughts...minimal SEs...smiles and laughter!
Fight fierce warrior sister!
(((Hugs)))
Cindy0 -
Steph, Thank you so much for your information. I appreciate you sharing.
Michelle-thank you also for sharing. You are very brave. HUGS to you!
I told my husband about the sketchy margins. He said, " I know I don't know much about the details, but I don't think you should have a re-do." I was quiet. I get it. He just wants it to be over. He thought after this surgery it would be over. He doesn't like inconclusive answers. Neither do it, but it is what it is. I will decide what is best for me and my mental and physical health.
Love to you all....will post tomorrow after I see the BS. Ha haa...BS looks like bull-%$*$*$. All that we have to go through IS BS. Hahaaaaa. :0
OXOXOXO
Laurie
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I think we forget sometimes that it can be really hard for a man to watch his "girl" going through all this. I remember after my thyroid surgery a few years ago, my husband told me that I looked like "death" when he first saw me after surgery. I think it really scared him.
Laurie - Don't assume that your guy just wants it to be over because he's ready to be done. He probably doesn't want to see you go through any more than you have to.
After we met with the breast surgeon, who "strongly recommended" bilateral masectomy, my husband said to me that he didn't see any reason to go through the more difficult "autologous" surgery, since it is so much more insult to the body. I explained my reasons for not wanting implants, and he totally got on board with me. Even though it's totally crazy. (my reasons)
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Thanks again Steph. I think you are right. And I love that your husband supported your very personal decision.
Blessings...
XOXOXO
Laurie
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Michelle...sending you peaceful thoughts. At first I had a difficult time deciding between surgery options and asked my surgeon multiple times what she would do. Of course she would only say that she would not give me options that were not "equal" and a woman has to decide which option will help them sleep best at night. When my BCRA test came back negative (I was diagnosed at 43 so my ins covered this test) I knew I would pick the lumpectomy. My hubby did not agree at first because he wanted me to do the most aggressive treatments possible...until I explained the pro and cons of all the procedures. There is so much that goes into the decision that someone who is not going through it personally can understand. They love us and think they are helping us with these opinions. Keep us posted how everything moves forward for you.
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Laurie...I think your appt with your BS about all this BS (: is tomorrow. Hoping he gives you the guidance you need to make your decision.
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Hi everyone, I have been reading this thread for the past several days, I have finally decided to join in. I just had a lumpectomy on May 30, Just found out today that I have clean margins and node negative, yay! I was just reading about everyones experience getting the lumpectomy. Mine wasn't too bad I guess, the Surgeon had told me about the wires and radioactive dye, but I didn't really understand what was going to happen. I had such a burage of info. Getting the 4 dye needles was very painful, was not expecting it at all. She was very nice but took me in the room had to pull up my shirt and bra, gave me the painful needles, then I had to pull my bra back down then go back out to the waiting room. I wanted to cry and say I can't go back out there my boob is on fire!
The wire insertion wasn't too bad, I got to do it with ultrasound instead of with the mammogram for which I was greatful. The actual surgery was pretty quick and painless. The pain later was pretty bad, worse than I expected. I had a breast reduction about 7 years ago so figured I knew what I was in for, but the pain was a lot worse. I'm feeing better now, overall, but still very sore. Much bigger incision than I expected, about 5-6inches and another 2-3inch incision for my lymph nodes. I had 3 removed, no one has really talked to me much about lymphedemia, I was hoping with just 3 taken I wouldn;t have too much problem, but seems like that may not be the case.
Sorry to go on and on but just trying to give a little of my background. I had a question, it seems many of you have not had Chemo, what were you factors in deciding? My Dr. said I would probably need it, prob because I am 43. If it comes back borderline, I feel like I want it, from what I have researched it think I would feel better having it. What are your opinions? Does it sound crazy that I would want it?
The other thing I was not expecting is the big difference in the size of my boobs now, anyone else have this problem and what do you do about it, I feel like it is really noticeable. Not sure of the cup size difference just wearing sports bras for now. Now that the surgery is over I keep second guessing myself if I made the right decision, it was all such a whirlwind that I didn't do a lot of research on the exact SE of radiation. Esp long term side effects. Any comments there? Guess I have said enough for my first post, lol it has been building up as I have been reading all of your posts and experiences.
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Puppymama09
I had my surgery in Oct 2011 (hospital called it a partial mastectomy, but I think it was about the same as a lumpectomy). Also had to have 2nd surgery (4 days after original) to drain 1000cc of hematoma. Surgeon told me later it would be months before the breast would feel normal.. he was right. It did take a long time. He also had removed 5 nodes and all were clean. That boob ended up being about 1 cup size smaller than the other one... until...I developed a seroma 9 months later. Had it aspirated 2 different times, because it was causing pain. Since then I think it has come back but doesn't bother me and the bra is fitting better now.
I was 68 at the time of my diagnosis, and the oncotype score was 18 (12%) chance of recurrance. The medical oncologist said with that low a score and my age that he thought chemo would not be of much benefit. I did have the Brachytherapy radiation, twice a day for 5 days, where they inserted a balloon into the site where the tumor had been took several months for skin to look normal, and the RO had me massage it with a cream for several months.
I go back to both oncologists every 6 months for follow up and so far I am cancer free..
I have been on Letrozole now for 19 months, have a few SEs but nothing that I can't handle.
I wish you the best of luck in your healing.
Vickie
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Puppymama09 - welcome to the Lumpies. Glad you found us, but sorry your procedure and healing has been difficult. There are a lot of different factors that determine if chemo would be beneficial. This site does a great job discussing. Make a last of questions for your appointment with your MO.
Age, size, oncotype, nodes, grade, history,...goes on and on. If my MO had said chemo I would have said yes, but he said no ...rads&HT. So rads done and taking HT.
Our cancers are all different ... So all the different tx profiles.
Yes, my lx girl is a B and the old girl is a D. Went for a fitting and look much better in clothes. Got a little chick filet to help! But it's nice to have the feeling...same girl just a little smaller:)
Rads...would do them again. My c was near chest wall so margin was less than BS desired. Rads were not option. My RO team is greatest...I would have been more worried of the SEs of NOT doing rads...recurrence and mets.
Now that I'm a month post rads and the PTSD seems to be easing ... I'm just so thankful and grateful for my tx and my new normal...I love life:))) more please!
Hang in there warrior it does get better:)))
(((Hugs)))
Cindy
At gym today 4 different strangers came up and told we they were 5, 7, 10, 23 yr survivors ...guess I will wear my compression sleeve proudly with my sisters! Roar!0
