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Lumpectomy Lounge....let's talk!

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Comments

  • cakes
    cakes Member Posts: 89


    Wow ndgrrl.....please keep us posted.


    Saw my Onc today and will start Femara once insurance co talks to the Onc. Get this, I was DX with BC, had a lump and rads and they STILL need to approve my hormone therapy??? SAD!


    Take care Ladies


    ((HUGS))

  • L2girl
    L2girl Member Posts: 58


    ndgrrl,


    What a situation. I'm sure your appt. Wednesday can't come soon enough for you. I hope they get some answers for you.


    Just know that we are all here for you. Lots of ((((((hugs)))).

  • bounce
    bounce Member Posts: 215


    Hang in there ndgrrl.


    Breathe and stay calm. Make sure everyone knows you had internal rads and a bleed and maybe a seroma before doing any tests - just say they all know.


    Also ask how Tamoxifen can affect cysts. I have lots of cycts in my left breast - not the lumpectomy side - and I wondered if that had something to do with MO's decision to put me on Tamoxifen so quickly.


    Once you have all your answers you shoud let the doctor know how you feel about not being informed sooner about the cyst.


    Ultrasound is also a good test for looking at cysts. Do you have them?


    Hugs

  • ndgrrl
    ndgrrl Member Posts: 645


    I have what I found out today a- complicated cyst in the 11:00 position in the same breast I had the lumpectomy. The doctor was aware of it in July when she did my biopsy . My cancer was in the 12:00 poistion in the same breast. Why would they take a wait and watch approach when I was having a lumpectomy already. Wouldn't they have just biopsied it then? THey said I should have it ultra sounded in January - What then if it looks suspicious? Do I start all over again? :( I guess I should be happy they are watching it- but really why couldn't they have just did something when I already had surgery?


    Wed I should find out if the NP agrees that I have a Seroma and I Hope hope hope they can get me in for an ultra sound shoultly to find out more as it has become quite painful. I found out Seroma's are quite common with internal rads or so the internet tells me - its as if the medical community where I go are unsure of how to handle my situation. I am getting tired of the 4 hour round trips and thought I was close to the end of all these twice weekly appts :(

  • summergal
    summergal Member Posts: 65


    Oh, ndgrrl - hate to sound cynical, but sometimes I think we are all either experiments or dollar signs. I have yet to have had even one doctor say to me, "I am so glad we caught this; you are important and we're going to do everything we can to help you survive this."


    Did you have an MRI or ultrasound after your initial biopsy? I had both after being diagnosed after my first biopsy (on my left breast) - then when they saw "suspicious findings" on my MRI, they referred me for an ultrasound biopsy on the suspicious findings and that's when they discovered the cancer in the right breast, too. My surgeon had explained that after the first biopsy, they wanted to get a more extensive look at both breasts, since they had only done a diagnostic mammogram on the left based on the microcalcs seen last year. That's what turned up the additional tumors. I'm shocked that your people waited. At this point, I would demand that they fit you in to see about the mass. You shouldn't have to go back twice, or wait until six months (would that be six months post surgery, or six months post mammogram? My surgeon wants me to have my first mammogram six months post surgery).


    In the meantime, I hope you can find a way to relax. Blowing bubbles (little kid bubbles with the wand?) always helped me. It forces you to breathe and gives you something pretty to distract you. Unfortunately, I'm learning that the treatment of cancer has a long way to go before it's perfect in this world. Hang in there. Thinking of you.

  • bounce
    bounce Member Posts: 215


    Hi Summergal


    Blowing bubbles sounds calming. Blowing up something with dynamite sounds better. I think I would feel very relaxed if I could send my MO and RO's cars sky high. BOOM. That would snap them to attention.


    I think I have entered my "angry phase". Maybe its just a SE of Tamoxifen. Don't panic - I am usually quite docile and just thinking about exploding cars (nobody getting hurt of course) made me feel better.


    Jokes aside concentrating on breathing is one of the best ways to calm down and release tension so thanks for bringing it up.


    I am going to visit my Mom now, who I love but who is driving me crazy lately because everyone is driving me crazy lately (cliche of the day - its me not them :-) ).


    I am going to concentrate on my breathing while listening to her. Or I will be thinking of blowing things up!

  • kch0827
    kch0827 Member Posts: 1


    Hello everyone! I'm new to this so I'm not sure if this is the correct area to post a question?? I'm 31 and had a lump removed from my right breast about a year ago. They first did a biopsy, it was benign but contained lymphocytes. The doctor said he really didn't have an explanation for the lymphocytes and said I should follow up with a pcp. He said lymphocytes could be a sign of lupus or diabetes among other things. I had blood tests done and everything came back normal. I decided I wanted it out anyway so I underwent surgery and had it removed. The thing is the lump never seemed to completely go away! It now seems to be getting bigger again and I really don't know what to do. I have been getting regular mammograms (which seems odd given my age) and ultrasounds but they only show "dense" breasts.


    My question is...should I go to another surgeon and request a MRI or CT be done? I really don't want to find out 5 years from now I have some rare type of breast cancer that should have been treated from the start.


    Thank you all :)

  • summergal
    summergal Member Posts: 65


    kch0827 - welcome! You said you had surgery to remove the lump - how extensive was the surgery (i.e., did they call it a lumpectomy?) - the reason I ask is because I'm wondering if the lump could be a seroma or scar tissue? Have you had it evaluated recently? Given that you are getting regular mammograms and you already know that you have dense breasts, if I were you, I would definitely seek a second opinion from a breast surgeon (i.e, one that specializes in surgery of the breast) to get a breast MRI done. I have dense tissue also. It makes it VERY difficult to see the cancer on a mammogram, because the dense tissue appears white on the mammogram and so does any cancer. It's like trying to find a snowflake in a snowstorm. The MRI can help, because it can "see" through the dense tissue - be prepared though for some pushback - doctors are sometimes reluctant to order breast MRIs because they are like turning a high-powered telescope on the night sky - all of a sudden they can see EVERYTHING, and not everything that they can see is cancerous, but they (and you) might feel compelled to do more biopsies, just to determine if what they see on MRI is cancer or not. And it can lead to a lot of false positives, is what they'll tell you. BUT...a breast MRI is what detected "suspicious findings" in my right breast, which then led to an ultrasound biopsy, which revealed that I had cancer in my right breast as well as my left. Even if you seek a second opinion and that surgeon says no to MRIs, I still think it's a great idea to get a second set of eyes looking at your recent mammogram as well as performing an examination of the lump, to establish a baseline. If you are not sure how to get a second opinion, consider if there are any cancer centers located near you and go to their website. Usually there is a place on the website where you can register online for a second opinion appt.

  • TeamKim
    TeamKim Member Posts: 301


    kch0827 -- I think it is time to get a second opinion from another surgeon and see if someone will refer you for an MRI. Given your age, it is peculiar to have regular mammograms. And mammograms are not that effective with dense breast tissue. So many of us have gone for pre-surgery MRIs and found additional areas of cancer. In my case, I was referred to a surgeon with a diagnosis of DCIS based on microcalcifications found in my annual mammogram. But the IDC which showed up only on MRI was invisible to subsequent US and diagnostic mammogram due to the density of my breast tissue in that area. So that second area had to be biopsied under MRI guidance. As I browsed these boards, I found a lot of women with similar stories. Insurance companies don't want to pay for MRI because it is expensive, so you have to find a breast surgeon who is willing to work with you to get this resolved and who will advocate for the additional imaging. I was fortunate that my BS believes in a lot of imaging before surgery -- it gave me a lot of peace of mind that we were using all methods to know that we had the complete picture before surgery.

  • ndgrrl
    ndgrrl Member Posts: 645


    Hi all,


    I had 12 CC of fluid aspired out of my lumpectomy site today. A bit sore but I should not ache so much anymore.. The Nurse Practioner could not feel anything but at least agreed I should not be getting into more pain at this stage and they were able to fit me in for an ultra sound and the radiologist whom I had spoken to on the phone was there so she read my ultra sound and was able to aspire it right away!! Thank goodness something worked out!! The NP kept wanting me to go have an ultra sound and then refer back to the surgeon which only knows how long that would have taken. I insited I had spoken to this radiologist and I wanted her to do it as she did the original biospy. Also they checked the complex cyst that is in that breast and said it is not growing so they will do a follow up in 6 months- Just wish that was GONE too when they removed the cancer :(


    Thanks for all the advise you all gave me to see a doctor, its so hard when you don't know what the "NEW" normal is. She said she does not like to aspire to often so said she didnt want to see me " too often"- I am not sure what that meant. hmmm

  • Vicks1960
    Vicks1960 Member Posts: 393


    ndgrrl


    I rather imagine that she meant what my MO/RO/PC all say, "they prefer NOT aspirating it because of the risk of infection." I have had to have mine aspirated twice in 2 years. I go in for another 6 month check up on Nov. 1 and I suspect that my breast will again need it (been a year since the last one), because of the discomfort (sometimes just plain pain) it gives me. Will see what my RO has to say. I also see my MO the same day,.


    Vickie

  • bounce
    bounce Member Posts: 215


    ndgrrl - don't you just want to tell your doctor that you don't like being poked by needles and hope never to see her again!


    I agree with Vicks1960 read of the situation that she didn't mean anything bad but it sure makes me angry when people make comments like that.


    (A while ago I had an ENT tell me: "I don't want to see you after an episode of vertigo - I want to see you during the episode." I wanted to tell him - And I don't want to see you ever again! How did he think I was going to get to him if I couldn't stand up without falling over sideways? So funny. :-) )


    Hugs and smiles to all.

  • cakes
    cakes Member Posts: 89


    ndgrrl - I hope draining the seroma makes you a more comfortable. The docs do worry about draining seromas for various reasons but having the pain gone will allow you to get rest and heal.


    My RO told me at my last appointment he didn't want to see me there again. We just laughed and I told him if everyone did their job correctly, he wouldn't.


    Take care ladies

  • summergal
    summergal Member Posts: 65


    Hey, all. I am exactly six weeks post-surgery (bilateral lumps). Today I'm having a bit of a hard time with the way I look now. I want to preface this with my new acronym - IKISBG (I Know I Should Be Grateful) - but there's quite a difference in what I look like now vs. what I looked like coming out of surgery and a few days after when my husband and I both remarked that "Gee! It hardly looks like anything's changed!" Now the swelling has gone down, the tissue has retreated to where it's gonna be, the scars are still (and for quite some time to go) red, and I do look sort of, well, mangled. Not in all directions. But if I lean down or lift my arms up, it's very obvious that, Something Has Happened. Again, IKISBG, and I am. It's not terribly depressing at the moment, I'm realistic about it. But I know that if I keep these feelings in and don't say anything, it could get very dark. It's funny - when I was first diagnosed and trying to choose between BMX and BLX, I thought of all those times I disparaged myself and didn't measure up, and didn't think I was beautiful or even pretty, and wished I looked different. And, facing the potential loss and/or disfigurement of my breasts, it was then I realized that we are actually miraculous and beautiful in the way we are made. I guess I just have to reframe what "beauty" is now. Peace all.

  • TeamKim
    TeamKim Member Posts: 301


    Summergal -- Did you have regular lumpectomies or oncoplasty? I forget what you said earlier. And will you be having rads? My MO said that rads further change the shape of things, and plastic surgeon agreed that rads will contract the breast a bit more. But once all the treatments are said and done, PS said come back if I am not happy with the new girl (or with the old girl and want her to match the new girl) because further subtle reconstruction can be done. At this point I am happy and even fond of my girls, though the old gal is not as perky, lol! I need to finish chemo, then go through rads, then PS said things take about 6 more months to settle in to how they will be.

  • Fephna
    Fephna Member Posts: 45


    Hi ladies, I haven't posted much lately and just caught up on everyone. It's been a rough couple of weeks. I feel like Bounce and Sumergal, going thru an angry phase as well as getting used to my new look and a new normal. I have 3 rads left!!! Oh I can't wait till this part of treatment is over!! I am quite exhausted and because I had the oncoplasty I have been in pain the last 2 weeks. RO explained the rearragngement of the breast tissue just was healing and rads is hitting all that tissue. My underarm has a rash and is peeling. Also my snb area very painful, again rads hitting that area. My sensitive breast skin red but still holding up, soo greatful for that. 3 more rads!!! Oh I said that already. Lol I feel everything and everyone is bothering me. I so hope this passes when rads is over and I can heal from that. Then my oophorectomy surgery was moved a week to nov 13. That got me terribly upset as my lumpectomy surgery was moved. Why can't appts just stay put when made. Drs don't realize we have a life and make plans to coordinate around surgeries. Whatever! New plans made and again I can't wait till that part of this process is behind me. Begin another new normal. One nice thing I start pt Monday at a clinic that specalizes just in breast health. They also massage scars. My left arm so weak and now snb area hurting so much, some pt and massage will be a pleasant change.


    Gentle hugs to all!!

  • TeamKim
    TeamKim Member Posts: 301


    Thanks for checking in, Fephna -- you are near the end.... Light at the end of the tunnel!!! You have been so strong to get through the journey this far -- hang in there. What do you have planned to celebrate the end of rads?


    It helps so much to hear how rads went for you.... Once I finish chemo in December I get a 3 week reprieve and then it is on to rads.

  • ndgrrl
    ndgrrl Member Posts: 645


    Fephna you are near the end soon it will be behind you another stepping stone out of the way. You will like PT- I have been going and it does help alot- she also showed me how to massage my scars. I felt secure in asking her things and she would come up with a solution to help me feel better.


    I also hate it when doctors change appointments after you have gotten all the plans in place- its frustrating!!


    Summergirl. I know how you feel about how you now look. My poor boob just isnt the same, but she is mine and I am happy to have kept her. even if I now how to watch a cyst inside every 6 months. I still have her. :) I have thought a nice tattoo to cover the scars might be a thought.


    Cakes- I was able to rest- last night I slept on the girl and SLEPT for the first time in weeks!! I am not hurting so much anymore!!


    Vicks- Doesnt it just hurt when it needs to be drained? Mine was aching!! I am not sure if 12 cc is alot- but it felt great to have it out of there.. Can you get a mammogram if you have a seroma in there? That has been concerning to me. Will I have to have this drained before a mammo? What do you do before you have yours? I just hope hope hope this can heal now.. No one told me this could happen either..


    I never want to see that doctor again if I don't have too. I wish I had been more smart mouthed and I would have told her just that. She told me it more than once. I know there is a chance of infection and its not that pleasant to have done- but wow does it feel better.


    Thanks all for the support as always.. :)

  • Fephna
    Fephna Member Posts: 45


    Hi TeamKim, yes this part of treatment almost over! Today machine went into the 2nd position and froze. Weird buzzing noise. I said..this is not happening..again!! I'm almost done!! Lol but tech rebooted and I was able to finish. I wasn't expecting this pain, but meds are helping. In a way chemo will let you heal a little longer. Hopefully it won't happen to you. But breast still looks good. Red right now. PS left it slightly larger then the right and RO said it was a little swollen last week. She said after rads swelling will go down and possibly some shrinkage. So time will tell. Tuesday, last day of rads my family is taking me out to dinner to celebrate. I can't wait! :)


    How is chemo going?

  • TeamKim
    TeamKim Member Posts: 301


    Fephna -- Thanks for finding a silver lining in chemo, lol! Actually, I have to say that my anticipation was far worse than how chemo has actually turned out to be so far. I had a few SEs the first week, but mostly fatigue. I was able to work the week following my Thursday infusion. But then my WBC count went low and I got a "diaper rash" and a fever. Ended up getting one Neupogen shot and a 7 day course of antibiotics. So another weekend of lying around. Starting to feel more normal now, just in time for my next chemo infusion a week from today. Hair has been falling out like crazy for the past two days, and I had to break out a hat today for work. Ladies on the Oct. chemo thread have been awesome, but I still check in with the Lumpies and feel like this is my home base. Good luck with those last few rads, and enjoy your dinner out!

  • bounce
    bounce Member Posts: 215


    Hi Summergal - regarding how you look now - hang in there - things still change.


    On the emotional level of learning to cope I am not going to say anything because I see other people have answered - but I just wanted to say that after my lumpectomy my boob looked great. (I didn't know how swollen it was!) Then at about 4 weeks to a month after lumpectomy I noticed a 5cm long groove running down the side - not even close to where the incision was. No-one else seemed to have dents or divets or "missing" bits at that stage and I was quite upset - even though I didn't expect to be.


    At that point I was still wearing a bra most of the time. Well, I noticed that after I took my bra off the groove was worse and if I could leave my bra off for a while it got less noticeable. So then I tried giving my boobie more time out my bra and I am happy to say it seemed to work. I eventually got to the point where I could walk around without a bra at home - a far cry from the first week when I went around holding my boobie like a football. The groove seems to be mostly gone! I still have a hematoma and I don't know how that will or won't effect the final appearance - but hang in there - a lot of healing still has to happen.

  • starshollow
    starshollow Member Posts: 4


    I got a lumpectomy and snb yesterday. I am fortunate that I'm not in a lot of pain yet. I heard day 2 will be the most painful. Everything went really well. Just waiting for the results.

  • bounce
    bounce Member Posts: 215


    Hi starshollow. Welcome.


    Don't believe everything you hear! My own mother (who is very sweet) told me the third day would be the worst - She said - "With ANY surgery the third day is always the worst". I spent the day in fear. Honestly!!!!


    I don't know why people take one person's experience and turn it into a rule.


    I would take pain medication if you need it and start to do your physio exercises as soon as you were advised to. (For me it was from the second day.)


    And never listen to other peoples' scary predictions. We would all be rolling in pain, killed by chemo and dead from radiation if we listened to all the scary stuff people say. Instead we are running around giving the devil something to think about! :-)


    Don't expect anything bad to happen. Presume you will heal and get better and better. Tell yourself actively that you are getting healthy and strong. Listen to your body and if you think there is a problem be in touch with your doctor. If a problem arises you will know and be able to deal with it - you don't have to keep looking for problems.


    We are here to hear how you are doing. There is so much to share. Hope we can be useful. I herewith send you your very own pair of "big girl panties". You keep them close and whenever you are feeling miserable or scared or worried or down, you take them out and put them on and then you are big and strong and brave and capable of anything.

  • Vicks1960
    Vicks1960 Member Posts: 393


    ndgrrl


    The first aspiration my PC did in the office. Pain? when he inserted the needle about like getting a shot, immediately felt better when he siphoned the seroma out. That time it was 11ccs. I teased my PC that his lab gal does a more comfortable needle insertion than he does. He rebutted "give me some credit, her needle is a lot smaller than this one". We both had a chuckle (so did his nurse)...


    The 2nd time, PC tried and couldn't seem to get anything so had me go to the outpatient area at our little local hospital and the radiologist did it with ultra sound guidance. The Radiologist numbed the area before he drained it. This time he removed 12ccs.


    Yes, you can have a mammo with it in there. Seroma's don't show up real well though. An ultrasound is better at locating it.


    My RO (in Lincoln 75 miles away) says that he has some patients that have the seroma for 5+ years. Unless the Seroma causes a lot of discomfort, he says he just lets them go, eventually the body will reabsorb the fluid. I go in for my 'new normal' 6 month checkup on 11/1, am going to have a chat with him then because sometimes it is a bit painful. I also see my MO that same day.


    Having this monstor BC certainly gives us different experiences!!! Some we would rather not have, but oh well... Deal with what we are given..


    Have a great weekend..


    Vickie

  • summergal
    summergal Member Posts: 65


    Bounce - you're the greatest! Always encouraging, always real, always with a touch of humor. Love your posts! :)

  • ndgrrl
    ndgrrl Member Posts: 645


    HI Vicks, I did have the Seroma aspired and they got out 12 CC's-- How often can you have it aspired. The radiologist told me she doesnt want to see me often. She put on some topical gel then used lydocain and i got to watch it on the Ultra Sound screen. Mine is quite deep the Oncology NP couldnt even feel it- she thought it was scar tissue. Just happy she listened to me and asked for the Ultra sound and they got me fit in right away.


    Is your PC your primary physician? I didn't know they could do those in their office. I may have to check that out myself.


    I was wondering what a Mammogram would do to a seroma, or how painful it would be to have one with that in there as mine is quite painful. Squeezing it sound like OUCH !!


    I sure sure sure hope my body obsorbs this fluid, this is just something else I was not told of when I made the decision to have a lumpectomy. I also was no told I had a complex cyst in that same breast that has to be watched by Ultra Sound every 6 months for 2 years. .HMMMM :(


    Good luck on your upcoming appointment:) If you learn anything about Seromas would you share it with me plz? :)


    Thanks for all the advice...

  • Vicks1960
    Vicks1960 Member Posts: 393


    ndgrrl


    Yes, PC is my primary care physician. He doesn't do the ultrasound in his office. He sends me across the street to the local hospital to the radiation department. Fairbury, NE is a very small community (less than 4000 population). He did do the original aspiration in the office though, It was pretty evident where it was. Seromas usually are body fluids that fill space where tissue has been removed, and we knew where that was. But the 2nd aspiration the PC was unable to find the fluid after trying so sent me across the street. (had to wait a day for the appointment.)


    I am glad we do have good medical care here. They have specialists that come out from Lincoln and our local docs are not afraid to refer us to specialist, either here or elsewhere.


    Vickie

  • lisacm
    lisacm Member Posts: 8


    I was wondering why some women have lumpectomies and then have mastectomy shortly afterwards? I am newly dx with idc grade 1 no stage yet. I was opting for lumpectomy until an MRI showed a suspicious spot on the opposite breast. That is getting biopsied on Wednesday. I'm not sure now what I'm doing, but I did noticed that many women have lumpectomy then end up getting mx. Any thoughts?

  • starshollow
    starshollow Member Posts: 4


    my surgeon just called with great news. Tumor was 0.6cm. Clear margins & no lymph node involvement. I'm thrilled.

  • ndgrrl
    ndgrrl Member Posts: 645


    HAPPY HAPPY DANCE STAR!!


    I had good news today as well the fluid they aspired out of the cancer cavity was just that fluid- no cancer cells hiding in it:)

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