October 2015 Surgeries

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  • Trichick1964
    Trichick1964 Member Posts: 43
    edited November 2015

    Thanks Marijen...I haven't tried anything topical but I'll ask the PS Monday when I see him for my first fill. Lidocain cream would feel good over everything. My entire chest is nothing but nervy skin pain. I get those patches of skin pain on my arms and legs, so I'm kind of used to it and can deal with it, but this nerve pain from the lymph node biopsy is insane. I wish I like narcotic pain meds because I'd be popping them now ;). Will see what Dr says about the cream. Thanks for the suggestion.

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  • marijen
    marijen Member Posts: 3,731
    edited July 2019

    Maybe like a mini water bed. No I don't have a wave effect. It is hard where the stitching is. Stitching underneath, glue on top.

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  • monarch17
    monarch17 Member Posts: 35
    edited November 2015

    The seroma I have is because the tumor that was removed was 6 cm. Yes big..the BS said that because my breasts were larger (36C), then he felt like he could take it out with lumpectomy, and he said he took a little more because of my grade 3, younger age, necrosis and size. All four things working against me. But if you have drains so I am thinking that will be less of a chance. I didn't have drains so hence the continued sloshing sound, but it feels like the "hole" in my breast is slowly but gradual firming up. Who knows what it will eventually look like, especially after radiation.

    So the breast surgeon calls me this morning to tell me the results are in.

    As if I didn't already have enough info about this in my head to make it spin...I was just now starting to accept the idea of radiation, so go figure it was going to be a complicated diagnosis.

    So like I said, the tumor was big, 6 cm. I think when it is over 5 cm the recommendation to usually to have the breast removed, especially with the high grade. I have not read the report myself so I am just parroting what my doctor said.

    The margins are clear..by a good amount I think he said..6 mm. 2mm is the usual standard so for a second I thought I was going to get lucky - then the kicker...but there are rare isolated tumor cells in 1 of the 3 sentinel lymph nodes removed. Shit.

    So now I need to research micro-metastasis in a SLN with a DCIS with clear margins. Really? WTF?!?

    I did a quick search and found a lot of info already, but I'm in no mood to try to digest the statistics, the treatments, the recurrence, blah blah blah.

    I'm in the cancer business and know the lingo and even I am perplexed. That's why it took longer than normal, I think they were making additional sections of the SLNs after seeing tiny amounts of cancer cells in one.

    I know because I often did that myself in my profession. Patient had known cancer (of anything), and a fine needle aspiration of an enlarged node. Pretty much the same. Tons of reactive, pissed off lymphocytes spread over a glass slide, and you are looking for the needle in the haystack (aka the one or two malignant cells you can find). The Doc said 5-10 years ago the SLNs would have never been biopsied for DCIS as they are doing now...right now I'm still in a fog so can't figure if that was a "good thing" comment.

    I will see my doctor Tuesday, then the radiation oncologist soon. I will get my path report too and will have more questions, but this was a tough day. Not really sure if they will recommend additional surgery to take out the axillary lymph node. Not sure if radiation now includes the whole breast and lymph node (if I don't have it removed), or chemo..which just the though terrifies me. Or worse yet, all of it.

    I know I am lucky to still have both breasts at this point, and not experiencing too much post-op pain like many of you - but I feel this diagnosis of "micro-metastasis" just means "it" has gotten out. How do you start thinking that "maybe a few isolated tumor cells were only in that one sentinel lymph node and I am lucky they took it out" vs. "what if there is more circulating in my body and when and where is it going to come back"?

    Time to stop thinking about this and go to bed...good night.

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  • marijen
    marijen Member Posts: 3,731
    edited July 2019

    Monarch, I'm sorry, not good news. It sounds like you might have a missing primary tumor in your breast called Occult Primary Breast Cancer - there is a topic here, I posted there tonight and remember I had the DCIS/IDC confusion? DCIS is not a tumor, at least that's what I think. Anyways, it's late. My guess is you will need an ANLD too. Will be here after Dr. tomorrow afternoon. Remember chemo only raises your chances 3%? Not worth it to me. Unless that percentage is wrong. I will also know more tomorrow. Good night.

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  • PMR53
    PMR53 Member Posts: 452
    edited November 2015

    Monarch- I had a 5cm tumor too. I got a right MX because I didn't want to do RX. I had chemo though. I have a Seroma behind my TE and had it drained last Thursday. Waiting for culture report. With those micro cells found it may be possible that they can get them with RX. I am not a doctor but I thought I read that some where. You have choices though don't forget that. We are here for you . Every one of us has some weird path it's never textbook. Please let us know when you see Dr. 

    PMR53

    Oh ya pathology showed DCIS by the nipple. That was far away from tumor. So MX was a good choice. 

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  • Gabby56b
    Gabby56b Member Posts: 82
    edited November 2015

    PMR53...

    Have you had any fills on your TE's. How did that go for you?. I had my mastectomy on Oct 13...right side only with TE placement. 2.5 cm in 1 sentinal node, DCIS and 1.2 cm lump removed from 11:00 location. Going for fill tomorrow.

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  • mvspaulding
    mvspaulding Member Posts: 446
    edited November 2015

    yes, I am anxious to find out how the fills are going to feel as well.

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  • PMR53
    PMR53 Member Posts: 452
    edited November 2015

    Gabby, 

    I did have 1 fill. It was 50 cc. Could barely feel it going in. Achy later that night. Took pain med and muscle relaxant as prescribed.  I had a small Seroma behind TE they drained 30 cc the next week. No infection though. I just found out today. You can chose amount. I recommend low and slow. I am not getting another for 2 weeks. I am in no hurry. It's not bad at all though. 

    PMR53

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  • marijen
    marijen Member Posts: 3,731
    edited July 2019

    My original DX has changed to a lesser know form of BC that has no primary tumor. My DCIS has changed from grade 3 to grade 2 post surgery, I only had one lymph node out of 12 that "had a few" cancer cells, it was mostly fibrous. And I have to go back because they want a clearer margin on .3cm DCIS that was removed. Or Maybe there was a primary tumor and the Letrozole killed it. I have spent weeks trying to wrap my head around it. I am also supposed to still have radiation which is now moved back to make time for second 15 min surgery and healing. My drain keeps on draining so they wouldn't take it out today. Surgery again Nov. 20. : P My surgeon also agreed to give me a CTC (circulating tumor cell) test so see what the blood says. I still want the genetic testing either through Color Gen or a genetic counselor. There's always going to be that recurrence fear. Radiation still scares me. I don't know what to make of all this.

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  • monarch17
    monarch17 Member Posts: 35
    edited November 2015

    Hi Everyone,

    Thanks for the continuing support. Hearing other women's experiences certainly does help me make better decisions.

    Marijen - Glad your DX was downgraded to a 2!. Yes I was having the same trouble wrapping my head around the DX that has "isolated tumor cells" in a lymph node but with clear margins. I also think that is great news that only one of your 12 nodes had a few cancer cells in it, especially considering you had a lump in your armpit. I would do what you are doing considering the newer results - try to get the rest cut out and hope that it's all out, then add the radiation to lessen the chance of recurrence.

    After speaking to my BS today he said a few things that made me feel more at ease:

    You do want the clear margins to try to get it all out as much as possible. One reason they usually suggest Mast at a tumor at 5 cm or larger is because if you have smaller breasts, then it will be very disfiguring. I got lucky that the scoop he took out of me is healing and looks surprisingly close to the other breast (minus the scars). Even the BS said, "Damn, that looks good.." I took it as a compliment :)

    Treatment for a high grade DCIS is the same with isolated tumor cells in one sentinel node. He said because there are only small amounts of tumor cells in one SLN, they don't recommend dissection of the axillary lymph node. He said you would rather have those large nodes still fighting for your immune system rather than taking any more out. If you have several lymph nodes involved then that would be a different story.

    Also, additional axillary LN radiation is not recommended in my case either, just whole breast radiation as indicated in the beginning. They hope that radiation will get any of the little buggers still left behind. No chemo recommended either (because the side effects will be worse than the benefit in my case), and he said the radiation side effects are relatively minimal. The scariest side effects are rare, but include a new breast cancer or angiosarcoma from the radiation..but he said that was rare and most women have a sunburn, skin sloughing, discoloration. He said the breast should not shrink too much, so I am hopeful after all this is done I may be able to have a minor breast lift on the other side if needed.

    I know now I feel lucky that the treatment is radiation only at this point. Taxomifen is not an option for this tumor (ER -), but the Hematology Oncologist may suggest taking it for prevention of another primary breast cancer that could be estrogen receptor positive, either in the same breast or the other. All of us are at an increased rate for recurrence than other women anyway..that's just a fact. I will listen to the Hem Onc and Rad Onc recommendations at my appointments next week.

    Follow-up for me will be flip-flop of MRI and mammograms every 6 months, and they usually monitor for 5 years. The palpable lump was never seen on Mammogram because of my dense breast tissue so not sure how mush faith I put in that anyway. He said it is crucial to keep monitoring after 5 years because he has seen it come back even after 10-15 years - so don't become complacent. As we all know now, the key is to try to find it early enough and treat it, and your prognosis is good for long term survival. As shitty as it may be to have to go back and keep having things cut out, I believe it would be so much worse if it spreads.

    We have to stay strong and fight this F-in' cancer - make it our bitch as opposed to the other way around.

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  • marijen
    marijen Member Posts: 3,731
    edited July 2019

    Hi Monarch. Thanks for reviewing my case and giving your input. But there's something not right here because my pathology report says that I had (they took it out) DCIS, which the surgeon told me yesterday is not invasive and because they didn't find a PRIMARY tumor to explain the cancer cells in one axillary node, then it must have either gone away with the Letrozole or I have Cancer of Unknown Primary or Occult Primary Cancer. I've been reading at Medscape - you have to sign in but no charge. It's a great source. All about this new development. Treatment for Axillary metastasis and CUP are the same as treatment for stage II - lumpectomy and axillary node dissection with radiation. Tomato tomato? So the question is - did they find a primary tumor in your breast? BTW I'm glad you are happy with the surgical finished product. You can't tell any difference with mine either. A new cancer from radiation is due to a genetic issue. I think it falls under TP53. Let me know what you think next time you come around. I'm glad you're feeling good now. Sounds like it anyways. Going to watch the debates :) Be back later. P.S. I don't know why they listed Nuclear stage 2 on pathology report? Here's my main question. If they only removed one node for you, how do they know if the others are positive. Thanks again!

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  • KickinBootay
    KickinBootay Member Posts: 38
    edited November 2015

    Monarch I hear you and that does SUCK! I thought after my second surgery with clear margins and still beautiful breasts if I do say so myself I'd have to do a little radiation and be good too go, well that's what the surgeon told me when we discussed my second pathology report.....BUT NOPE! Saw the oncologist on Friday night WILL NEVER RUIN another weekend with a Friday evening appointment! He said to me well since there was Micro blah blah cancer cells found in one lymph node we need to do 12 rounds of taxol.....taxol rhythms with FU right? All jokes aside I see the surgeon on Monday for a sx follow up and I have another appointment for a second opinion with another oncologist even if just for my piece of mind before we inject more hell into my body! UGH! I did neoadjuvant therapy 4 A/Cs....I thought I would be done by the 1st of the year.....love strength and hugs my friends :)

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited November 2015

    kickin...if it's any help, I did the neoadjuvant A/C treatment followed by taxotere and carboplatin...the A/C was by far the nastiest of the bunch. Biggest thing to watch out for is the neuropathy. I had some heinous mouth issues on the taxotere, but everyone else that did the taxol didn't really have them so much. If you survived the A/C, you can cope with taxol...but it does suck to have to go back for more chemo at this point. I'm so sorry that you have to take another turn on that ride.

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  • Smurfette26
    Smurfette26 Member Posts: 730
    edited November 2015

    monarch17 I was pleased to read that your surgeon doesn't automatically recommend an axillary node clearance.

    My surgeon told me the same thing. He said in the past it was standard practice but now he feels it creates more problems. He said most often the vast majority of cleared nodes came back negative and in some cases women were left with terrible problems with lymphodema. He said every day he feels more confident that the best practice is to monitor closely. In all of his patients he has treated this way in the past 5 and a half years, only 2 have required further surgery for more cancerous nodes and their outcomes were no different to those women who didn't need more surgery.

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  • Acjeffrey
    Acjeffrey Member Posts: 9
    edited November 2015

    I am greatful for this website! Thank you for accepting me. My bmx was October 26. Everything went well as expected. I could not believe when my breast surgeon not even 24 hours after surgery, tells me I could go come if I wanted. He found no medical reason to keep me. I could hardly move, go to the bathroom and the pain level was intense. I chose to stay. I found out the reason for the early release, the dr doesn't want me to be in an environment full of germs. I think he should have told me that. Recovery has been ok. I'm thankful for my family! My expanders are very uncomfortable, the drain tubes are cumbersome, trying to move around, exercise my arms and get my life back to normal. I'm a bit discouraged with why my bs didn't order the oncotype test. I was given an oncologists name and was told, she wasn't accepting patients till December 15. I was not going to wait. I got a younger female oncologist from the same practice, that I like. However, I now how to wait two more weeks to determine if I need chemo. I follow through with the plastic surgeon tomorrow. Going to ask when I can go back to work. I hope everyone is recouperating well!!!



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  • mvspaulding
    mvspaulding Member Posts: 446
    edited November 2015

    Welcome AC, my BMX was the day after yours. I went home the next day after my surgery because I wanted to even though my hubby was adamant that he thought I should stay. I am a little surprised that your surgeon didn't order the Oncotype right away. Mine did, however I am still waiting for my results. My BS said no matter what they don't want any treatments to start until 4 weeks after surgery so my body can heal first. It's funny how everyone gets different instructions. My drains came out last Friday (best day) but my PS has told me not to do any unnecessary arm movements yet. Definitely no exercising. I go back to her this Monday so that may change then. I am a little concerned that I can't raise my arms straight up right now. Do we get some exercises to work that out or does that pretty much happen with healing time? Not sure if anyone knows since we are all in the same boat. Did they give you an estimated time off work, mine is 6 weeks. I will eventually have to take a little more time when I have the permanent implants put in

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited November 2015

    mvs, as far as rehab for range of motion, I was told that once the drains were out, I could begin stretching to regain my flexability again. There were no restrictions on stretching my arms above my head at all. However, I was restricted to avoid any weighty lifting until the 4th week and then to start off with very light amounts. Each week I am 'allowed' to increase the weight that I lift. I believe my p.s. and rehab specialist are more liberal in terms of what they allow. Many p.s. are much more conservative. However, I will say that I have about 80% of my range of motion back already (surgery 10/19). In the a.m. I do still wake up with some major stiffness...hoping that improves soon.

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  • PezGal
    PezGal Member Posts: 99
    edited November 2015

    Hey - been following but haven't posted yet. I had BMX on October 20th. My surgeon said (haha) that if I was bored enough I could go back to work 1 week after surgery, but she gave me a note to be off till mid November. I ended up going back this past Monday, just short of three weeks. I have a desk job so it's definitely manageable but tiring. Anxiety about my situation and crappy pathology results has me taking "meditative walks" at lunch time. I clocked 3 miles yesterday! I can appreciate you all are so positive, but I am freaking out over here.

    Oops. My 30 minutes of breastcancer.org is over for today. Must try to focus on something else now.... Big sigh...

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited November 2015

    Welcome Pez. Sorry you've joined us under the circumstances. Glad that you seem to be healing from surgery. It looks like the path moved you from dcis to idc...? So sorry to see that. Do you know your next step in treatment? We are here for you when you need to vent or freak out. Freaking out is completely okay and normal.

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  • KCinMN
    KCinMN Member Posts: 81
    edited November 2015

    Welcome to the new ladies!

    Range of motion.... Mine is terrible! I have 5 exercises I'm supposed to work on 3x a day. Mostly to get those arms stretched out and back to normal. No weights, just stretching. I feel like I'm not getting very far though!

    I meet with the PT/Lymph. specialist next week. I had an ALND, so I'm def at risk. I'm anxious to hear what they say/recommend. I enjoy exercise and used to lift weights daily. I'll miss that!

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  • Gabby56b
    Gabby56b Member Posts: 82
    edited November 2015

    Heading to the oncologist tomorrow to get a plan for my chemo. 1 month after surgery, so now the next steps start. Will probably will be on AC/T for the next 5 months, just anxious for all the details and to get this show on the road...

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  • mvspaulding
    mvspaulding Member Posts: 446
    edited November 2015

    hoping when I go to my PS appt on Monday that I will get some exercises for range of motion then.

    Gabby, sorry to hear that. Have you known from the beginning that you would need cheno

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  • LiLNutmeg
    LiLNutmeg Member Posts: 30
    edited November 2015

    Gabby56b - Same here .. had my BMX Oct 21st .. just got the last drain out. Surgical oncologist is now passing me over for consults for chemo and radiation plans. Having an echo in the morning prior to treatment starting.


    I also will likely be starting A/C in the next couple of weeks .... I'm buckling up for the ride .. and expecting it to be bumpy along the way.

    Perhaps we can compare notes as the insomnia sets in and we have hours to fill

    Hugs and thoughts are with you .. /Beth

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  • LiLNutmeg
    LiLNutmeg Member Posts: 30
    edited November 2015

    On a lighter note ... it was pointed out I may be becoming a celebrity in reverse .... these are the odd thoughts that come to mind at 4:00 am .. comments not meant to offend .. I still feel very womanly .. just some random musings from an insomniac .. :)

    I figure now that I've joined this cancer battle .. I've had a previous hysterectomy, now a BMX, I'll have chemo .. will lose my hair and be bald .. .. my tummy is bigger than my boobs ... I'll be on hormone therapy .... I'm dressing more like a lumberjack each day ...

    And then it dawned on me ... I think I'm doing a reverse Caitlyn Jenner!!!!!

    Sheesh .. .Just call me Bruce! LOL

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  • jbdayton
    jbdayton Member Posts: 700
    edited November 2015

    Welcome to PezGal, glad to hear you are recovering at a fast pace. Remember you do need rest for a good recovery so please do not overdo it.

    My prayers are with all the ladies continuing with further treatments in addition to continued healing. This is a long and challenging battle but I have faith in everyone making it through the process.

    I am moving along again. I saw my PS today and have planned one more revision. Lefty is now smaller than righty. I am out of available fat and I refuse to put in an implant. We are going to remove fat on the side and toward the armpit to reduce the volume and shape with Lipo to even it out and do the nipples. The end is really in sight. Late next year tattoos to finish this journey. Hope to travel to Vinny's and make a vacation out of it. Maybe next fall when the leaves are changing colors.

    Now to plan next year, I will start with the Physical Therapist and get range of motion back. She is also a trained Lymphedema specialist. Then I am going to apply to the Y and sign up for the Livestrong program for cancer patients and start getting back in shape . I need to lose the 25 lbs I gained due to lots of down time with all my surgeries.

    I will see my MO on the 22nd of this month and my RO in Dec. I am almost 3 years from diagnosis and feeling good about the future.

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited November 2015

    Those of you moving on to chemo or rads, make sure to keep an eye out for a groupd starting the same time as you here on BCO. My April chemo support group has been essentual in getting me through my treatment. aif nothing else, you'll see what side effects everyone else is having and how they are coping.

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  • PezGal
    PezGal Member Posts: 99
    edited November 2015

    Thanks jbdayton, I'm not pushing too hard. Trying to find a balance between my mental and physical needs/limits. I could have stayed home from work more but that wont help me pay my bills. I ran out of leave so I'm on FMLA. I may be sick, but daycare still wants to get paid!

    DizzParkMom - Yeah. The upgrade I never wanted. The quick and dirty SNB during the surgery came back clean so I was feeling pretty good with DCIS and no nodes. At my post-op check up... the other shoe dropped. Needless to say, we did not have the planned celebratory steaks for dinner that night. :( Next steps - Lets see, Friday I have an appt with genetic counselor and gyno to test to see if I have ovarian cancer (BRAC1+) and discuss what I need to remove "down south". Monday I have a PET/CT scan which I am beyond nervous/scared about (a good friend of mine is that 10% that got diagnosed State 4 right off the bat - so I have a personal story to freak me out even more). Will most likely start chemo the first week of December for 20 weeks then one year of herceptin.

    I guess I'm still in shock. Just two months ago I was a normal person. I cannot believe this is happening to me. My husband is solid as a rock and very positive but he keeps looking at houses to buy (we moved to the state this past summer) and I'm like "We can't buy a house." I don't know if we ever can as I feel like my future is forever a question mark. Maybe 10 years from now I'll feel like I'm really "out of the woods". Are you all making life/future plans or just dealing with the current situation?

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  • KickinBootay
    KickinBootay Member Posts: 38
    edited November 2015

    DizzPark thank you! Im just bummed! I am going to get a 2nd opinion prior to starting taxol. Just because it would make me more at ease and give me piece of mind. I see the surgeon for a follow up on Monday and will talk to him a little more about what the oncologist said. Welcome Newbies! STAY POSITIVE!

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  • marijen
    marijen Member Posts: 3,731
    edited November 2015

    Has anyone heard from MissBee

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited November 2015

    Breast Cancer has a way of sucking you into a vortex where time stops. This nightmare started for me back in March of this year. I spent a good part of the days since alternating between panic, depression, and....well, just a plain old stupor. Now that chemo is over and my main surgery is over, I am suddenly thrust back out of the vortex and expected to pick up back where I left off. It is going to be hard, but I relish the opportunity that I can try to get back to 'the new normal'. My parents had planned to move across the country right before my diagnosis. They still sold their house, but moved in with us instead. Their plan was to help out here until I was recovered (whatever that is) and they would then make their move. Well...apparently I am recovered as of today, because they have hit the road. Funny, I don't feel recovered. I feel altered. Not only did I go through 8 rounds of chemo and some major surgery, a ton of my daily routine was done by someone else for the majority of the last 6+ months. Now, it's all back on my lap....as it should be. It's just weird. Oh, and on top of all that...they will now be on the other side of the country. It's all just too much to try to absorb some days. Some days, you just have to reject the anxiety, tell yourself it's all going to be okay, and fling yourself into a chore, hobby or horribly bad reality TV show.

    Those of you still at the onset of this horrible journey, let anxiety take an hour or two here and there. And when it's had it's time, reject it. Tell it to take a hike. Tell it you are not letting it have anymore of your time. Tell yourself 10 times a day that you will be okay. You will get to the other side of this tunnel. The light will shine brighter and brighter until one day, you find yourself near the end. I've had some really nasty, horrible days since my diagnosis. In the midst of it, I didn't know how I could ever make it to the end of treatment. Well, here I am. And you will make it too.

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