December 2016 Surgeries

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  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited December 2016

    So when we met for MO the other day, we did ask about a pet scan, she said right now it could give a false reading as my breast area will light up. She prefers a CT to be baseline etc. Lots of friends in Radiology and they agree with her. CT at this point is better than PET in my case.

    . Redememptive my back hurts also, but I am thinking it is because #1 I am lopsided now. #2 I have slept in a recliner for 10 days. #3 in my bed still hard to sleep on left side so sleeping on right and back and the pain is in my right side.

    I do get a massage once a month, and I am due for one, and my body always tells me Its time. Not quite sure if I can lay on stomach for massage, could be my reluctance right now

  • Lilo244271
    Lilo244271 Member Posts: 40
    edited December 2016

    redemptivesuferrer..my BS mentioned the PET scan. My new MO is in the same medical group with her. I have actually been seeing a different MO/Hemotologist for the past year because I have chronic high white blood cells and inflammation. He has been monitoring my blood counts every 3 mos and ran some blood cancer tests which came back negative. After being diagnosed with BC I am wondering if it might have been caught earlier had he done a PET scan. I have transfered all my medical records to this new MO so I'm not sure what the plan will be.

    I keep anticipating what is going to happen and I shouldn't do that. I am such a control freak and planner. I need to slow down and take one day at a time.

    I have noticed that my back has been hurting too but I think it is from sleeping and also holding myself stiffly when I am walking around. My son's girlfriend was just telling me that she has noticed me holding/cradling my breasts. I think I have been doing that unconsciously. It's amazing the things we don't realize we are doing.

  • pepper43
    pepper43 Member Posts: 103
    edited December 2016

    redemptivesuferrer- my MO pushed for full body PET with insurance after diagnosis. I think she routinely does this and I'm glad she did. A 6 cm mass was found in my right kidney that turned out to be most likely renal cell carcinoma per a urologist after looking through PET and follow up CT scan. Biopsy was not an option given location of mass (needle during pull-out could spread cancer elsewhere) and because of size, they decided removal was necessary. My robotic laparascopic kidney removal will be 1/11. I had a follow-up CT scan this afternoon as urologist wanted another look to better prep for surgery - make sure it hasn't grown outside kidney. I likely won't know results until I meet with him for pre-surgery appointment next Tuesday..though I will call the office on Monday to see if he'll just spill beans then as I'm on def con level 5 anxiety. Survival rates for advanced kidney cancer aren't very good at all. I've been repeatedly assured that kidney cancer is a slow growing beast but I don't find that very comforting given odds have not been in my favor during this whole BC process (you know the drill; most mammo call backs result in nothing/false alarms etc).

    I'm grateful for the PET scan as kidney cancer is a slow and silent killer- thought I should say that they do mostly throw up false alarms. I had another light-up in throat that is likely nothing. Haven't been tested or anything but during meeting with RO last week, he took a long look at area from PET scan and noted he didn't see anything. I also had area in ovaries light up but it was noted most likely a menstrual cycle kind of thing (I'll be getting an oopherectomy during hormone therapy portion of treatment and who knows? Maybe there'll be cancer there.) At this rate, nothing surprises me anymore...well the pain of tissue expanders did! I though everything after chemo &mastectomy was going to be a breeze.

  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited December 2016

    oh Pepper prayers it is not renal cell.

  • TTgirl
    TTgirl Member Posts: 2
    edited December 2016

    I had surgery on the 22nd. A lumpectomy on the left. I got word yesterday that I am cancer free. I haven't had my follow-up so all I have is the pathology report. From what I can tell this tumor was something that could have turned into cancer and I will have to be closely monitored.

    I am still in pain 8 days later and my nipple, only a portion of it, is black, crusted over and sunken in. I had some bloody discharge as well. I did NOT have this before surgery. There was no discharge. I showered to see if getting my skin moisturized would help. This might sound silly. But the nipple actually did perk up. However, much to my horror, it looks like there is a huge hole in my nipple. And there is a bit of red extending around the dark scaly part.

    Is this normal???? Any feedback at all is appreciated. I've only been reading here and never posted. This is my first.

    Thanks!

  • Kattis894
    Kattis894 Member Posts: 218
    edited December 2016

    aterry, by dead I basically mean a so called PCR (pathological complete response) that means that there are no cancer cells alive in the tumor anymore. by being triple positive I have received herceptin and perjeta before surgery. These medications directly target the cancer cells and according to my onc even though the tumor has not shrunk during treatment it could be possible that the cancer cells have died..I am not 100% I am correct with all this but I am keeping the belief that I will experience a PCR until someone tell me differently which they most likely will on the 3rd of January.

    According to my present luck I am pretty sure the cancer cells were having a party and I have to continue with treatment such as more chemo...well...nothing has gone my way so just praying that the pathology report will not be too devastating at this point.

    I am holding on to clear nodes and stage 2B like a maniac hoping that is not changing any time soon.

  • MyJourneys
    MyJourneys Member Posts: 143
    edited December 2016

    Hi everyone! I apologize for being offline so much, but I've had a lot going on. I ended up with 3 surgeries this month. My MX and lumpectomy on Dec. 5 was the only one I was expecting. The second surgery was a surprise result of my follow up, where they found some skin around the incision was dying, and lots of clotting around the implant. They removed that and inserted a tissue expander underneath my muscle. The third surgery was a sentinel node biopsy on my lumpectomy side because they found triple negative invasive lobular cancer there (instead of the hyperplasia they were expecting).

    I don't have results back from the recent sentinel node biopsy, yet, but the pathology I have so far isn't great. I have ILC, DCIS, LCIS, and lots of atypical cells roaming around having a field day, apparently. All of that (on the left side) is ER and PR positive, so I'll definitely need hormone therapy, and since 1 out of 2 nodes were positive, we were discussing chemotherapy and radiation. When the pathology came back as triple negative ILC (rare) on my right, they had to switch gears and now I'll have more aggressive chemotherapy, and if my sentinel node(s) are positive, it'll be even more aggressive still.

    I'm still stiff from my original MX and corrective MX, and was pouting about having 3 surgeries in one month, but I hope I can have a breather before making any other decisions or doing anything else. I doubt they'll let me wait long once the results from my lymph node come in, but I'm hoping...

    I know we have new members, and since the month is ending, I guess it's time to update everyone's stats in the first post. If you wouldn't mind messaging me with an update of your treatment, like this, it'll make it easier for me to copy and paste, and we can continue to cheer people on, and see if what we're feeling is normal:

    MyJourneys - 12/5, 12/14, 12/29 - MX left w/ ILC, DCIS, LCIS ER+PR+HER2-, lumpectomy right w ILC, LCIS, ER-PR-HEr2-, chemotherapy and radiation pending.

  • Lilo244271
    Lilo244271 Member Posts: 40
    edited January 2017

    Hi my myjourneys...I have been reading your old posts and am so sad you have had so many unexpected obstacles. You are in my prayers that things get brighter with the the new year. I will send you a message with my information so far. This thread has been such a sanity saver and I want to thank you for starting it.

    Happy New Year lovely ladies. May we all have a blessed 2017!!

  • Tunegrrl
    Tunegrrl Member Posts: 196
    edited January 2017

    TTgirl, that does not sound normal. How urgent it is is impossible to say, but if there is a 24/7 nurse you can call, that would be worth doing. I wouldn't want to take chances. If it doesn't look like it it is clearly improving, i'd even consider an ER visit to be safe. Black is a sign the tissue is dying. I was scared about that for myself, but then the dark areas on my nipple seemed more dark purple so seemed like just bruising. If it is necrotic, they can treat it before it spreads

  • dccancer
    dccancer Member Posts: 26
    edited January 2017

    I have a question for those with tissue expanders. I was doing ok with the pain weaning myself off the narcotics until the last couple of days when I seem to moved wrong and am having some pain near the node removal area and the valve area of the TE. Are others still needing more than OTC pain meds? I guess I will call the PS tomorrow but am wondering if I am just being a whiner :(

  • dcbc
    dcbc Member Posts: 143
    edited January 2017

    Hello December 2016 surgery sisters! I had three lumps (ILC) and 5 nodes removed on the left side on 21 December... what a crazy saga we are on. I am so fortunate that the nodes were clean... less fortunate in that my margins were not. Will be having a BMX in January (date tbd), and it appears my only option for reconstruction is expander => implants. Met with PS this week, and will have a strategy session with my surgeon this week. I dread surgery again, but want this thing gone. ILC is so sneaky... having bilateral surgery not only to nip anything lurking in the right breast in the bud, but also for symmetry... no way I'm reconstructing an F cup! ;

    Also have had almost instant problems with cording, and concerns about lymphodema... anyone else had such a quick onset for these problems? Starting PT tomorrow (initial consult was last week).

    For those of you who have already undergone the mastectomy surgery... what to expect? How does the TE feel (it looks so combersome!)? Did anyone else have itching with opioids? I ended up on Vicodin, Benadryl (for the itching) and Valium (for the cording pain), and slept through most of Christmas week... are ther opioids that are less likely to cause the itching?

    Thank the gods for this site, and a way to connect with you all. Here is to a happy and healing new year!

  • dcbc
    dcbc Member Posts: 143
    edited January 2017

    DCCancer --- wonder if we are both in DC? Are you seeing a physical therapist? I have been having the kind of pain you mention, and found out last week that I have AWS (cording) due to the lymph node removal.... might be something to ask either your surgeon or therapist if you are seeing one. In my case, the pain meds for surgery did not alleviate the muscle pain from cording, and a prescription for Valium provided relief... but if cording is the problem, therapy may be the rightcourse... there is a whole thread here, which I found so very comforting!

    https://community.breastcancer.org/forum/64/topics/850919?page=1#idx_23.


    Good luck!

  • dccancer
    dccancer Member Posts: 26
    edited January 2017

    Thanks so much! Yes I am in the dc area. I have had some success taking valium and advil so maybe you are correct. I will look into the physical therapy and the thread you posted.



  • aterry
    aterry Member Posts: 290
    edited January 2017

    katiss894, thanks for the explanation. I hope you're right and you have a PCR. It would be good to know that it is possible for a tumor to be inactive w/o shrinking. Good information for us all, really.

  • tlgio17
    tlgio17 Member Posts: 191
    edited January 2017

    Hi MyJourneys, so glad to see you back on but so sorry about all the stuff you have been going thru!  It is a whirlwind to say the least for all of us. 

    Because mine was grade 3, IDC and node positive (2/5) I have to have chemo, then radiation, then hormonal treatment.  Sounds so overwhelming and scary to me but I will forge one.

    I get my port installed on the 10th and first chemo on 12th.  I am dreading it all!

    Thinking of you and all the other ladies on here.  Hope everyone had a Happy New Years and that 2017 brings us all cancer free health!

    Traci

  • Lilo244271
    Lilo244271 Member Posts: 40
    edited January 2017

    dcbc...Vicodin makes me itch super bad. My dr gave me percecet instead. I took a percecet and Tylenol and it helped with the pain and no itching. I'm sorry you are going to have to have another surgery

    I will honestly say these TEs are irritating more than painful for me. The other night I felt like they we suffocating me and had a panic attack. I just kept thinking "how am I going to keep these in me for 6 mos". I am hoping that once I get me lower drains out it doesn't feel like there is so much foreign stuff inside of me. My bmx was 12/9 and PS is very conservative when it comes to amount of fluid draining in order to take them out. I had 4 and now only 2 (1 on each side). He wants me to be under 20 cc for at least 48 hrs before he will take them out and I am still at like 50 cc. My friend said I was doing too much which is why there was so much draining but I am afraid if I'm not active then when I am active and the drains out I will have complications.

    My nephew is a PT and he has a colleague who is doing research on MX and lymphedema. He said there is actually lots of contradicting theories out there. He's going to get me some information from her. I am still not moving my arm very much. One because my drain is still in and two I'm so afraid of causing a problem.

  • Row
    Row Member Posts: 7
    edited January 2017

    Happy New Year!

    It's been 11 days since by bilateral masectomy surgery. It was a blessing! They took two lymph nodes on each side and they were both negative.

    My husband, children, family and friends have been such a strong support for me. Especially my husband who's been on my side day and night. He helped me in/out of bed, get around, giving me my meds, feeding me, giving me sponge baths and more!

    I've been off my pain meds for over a week now. I'mean now taking Tylenol and ibuprofen.

    I've had my appointment my plastic surgeon last week. He took of my binder and all of my drains. Thank God! He added 50cc of saline on each side. I will be seeing him weekly.

    I am scheduled to also see my main surgeon, who did the Bilateral Masectomy, next week as. I think he will have the pathologist report on all of three lesions that will determine if I need further treatments. We are hoping and praying that I will not any further treatments.

    It has been a roller coaster ride since my diagnose back in October 31st. Since my surgery, it has been very difficult and enduring. I've been so uncomfortable. My stomach isn't stable. Sleeping has been inconsistent. I feel that I'm never going to be normal again.

    I still have four more weeks off until I go back to work.

    Wishing everyone a Healthy New Year!!!

  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited January 2017

    Happy New Year's ladies, not liking we are starting 2017 with all these issues. It is amazing how we are all different yet have the same disease. I had left UMX, with ALND. I asked about exercises, etc he said to continue my left arm as normal. I have had no real issues, I have been doing some exercises, but was able to wash my hair on day 2 in the sink with no issues.

    I am feeling for you ladies with TE they sound painful.

    Row I was thinking I was going back to work in January also, but not going to happen. I will be doing an aggressive Chemo so will be off at least 4 months. I work in a DR office, I can't afford to come in contact with any germs and delay my progress. Will be wig shopping this coming week and doing the look good feel good program. Here is the link if you are

    interested. http://lookgoodfeelbetter.org/programs/program-fin...

  • Tunegrrl
    Tunegrrl Member Posts: 196
    edited January 2017

    dcbc, could you not go direct to implants? I may yet require a mastectomy, but since my nodes and chest wall margins were clear, my surgeon has said i would be able to skip radiation and have immediate reconstruction. I'm not sure how they do a mastectomy and implants after a lumpectomy + lift with a lollipop incision, but i'll cross that bridge if i come to it. Best of luck

  • Srfmom
    Srfmom Member Posts: 5
    edited January 2017

    Goincrzy8,

    I had my mastectomy and ended up buying about 4 button shirts and Jammie's. Thanks for the advice!!

  • reneeCA
    reneeCA Member Posts: 45
    edited January 2017

    Hi ladies,

    RedemptiveSufferer - thanks for the words of encouragement. I'm so sorry your eyes are bothering you. That's got to be hard. It is quite amazing the collateral damage we suffer from surgeries. I have ear barotrauma from PS sending me to hyperbaric oxygen treatment - which blew out both my middle ears. 6 weeks and still not healed.

    tlgio17 - My BC dr did send me to PT with an Rx. She said I was ready and I felt that I was, too. I was going to develop strength only as I had no cording and only residual armpit pain from BMX, drain incision scars in my armpits (couldn't my PS put them a little lower away from hair & sweat!?!) and implants that feel like they are in my pits unless I stand like a Westpoint cadet. Please make sure you have gentle massage from PT/massage therapy. One bad PT messed me up with very aggressive massage/stretching. I was down to a level 4/5 pain and now I am back up to 7/8 and cannot lift anything with left arm. I kick myself that I didn't say "stop" to her. You put your trust in these people and it can backfire.

    ttgirl - I had dark purple area on incision that they thought might have to be debrided. BC doctor had me put silvadene on it 2 X day with sterile non-stick pads & tape. It was ardous but worth it as the skin finally crusted over and completely scabbed. Maybe you can snap a photo and text/email your BC or PS?

    pepper43 - prayers that the kidney spot is an incident-aloma and nothing more

  • dcbc
    dcbc Member Posts: 143
    edited January 2017

    tunegrrl: direct to implant was not mentioned as an option, but it is on my list of questions for my next appt. I think the scar ;fro my lumpectomy may have something to do with it... but thanks for the suggestion! Good luck w decision re radiation! I think I may also be able to avoid, hoping that is a silver lining of having to endure the BMX. thanks for the reply

  • dcbc
    dcbc Member Posts: 143
    edited January 2017

    Lilo, thanks for all the useful info! Keep me posted on the news from your nephew! I'm a rower, and I will be devastated if I can't get back to it... I figure I will have to miss most of next season, but not sure I can give it up forever!

    I will ask for Percocet for next surgery.... the added insult of Benadryl on top of everything else was not a good thing!

    Hope you get drains out soon... maybe best to try to slowly ramp up to activity? Good luck getting drains out asap, and hope that the discomfort abates... I agree, the idea of months and months of having them in is what bothers me most about the whole thing. Please let me know if it gets easier!



  • Kattis894
    Kattis894 Member Posts: 218
    edited January 2017

    My Journeys,

    Sorry to hear about all your complications...I am waiting for my pathology report tomorrow afternoon...arghh...anyway I do not understand all your "letter combinations" and would like to. Like ILC, DCIS, LCIS and so forth. Is there anyway you can explain or is there a page with explanations for short names on this site? Sorry for my confusion.

  • Kattis894
    Kattis894 Member Posts: 218
    edited January 2017

    Oh. and I like to say to those who did not put in an expander at this point. I decided not too since my cancer is so..well we do not know yet at all...so I did not dear too...but there are so many different types of reconstructions more than expanders and silicon. They can do flaps, flips and dieps (sorry can´t remember all the different names) and so many different alternatives so do not worry about that at this point is my advice

  • Kattis894
    Kattis894 Member Posts: 218
    edited January 2017

    Oh, sorry for posting again, but after reading threw some posts noticed some will have a port installed. I can reassure you it is not a big deal. The operation takes less than 15 minutes and the port unlike the one you have in the arm does not need flushing out every week. I like my port...:) The only thing to be aware off is risk of infection, I have had none so far.

  • Row
    Row Member Posts: 7
    edited January 2017

    Thank you "Goincrzy8"! I'm so sorry that you're going through an aggressive chemo. May God bless you!!! I'm here for you as well as the rest of us.

  • Keiki
    Keiki Member Posts: 51
    edited January 2017

    Kattis

    go to top of page, look at bottom of blue menu items down left side. After "jump to forum" go button. Help with abbreviations.

    Good luck with your battle. I will be watching your success


  • tlgio17
    tlgio17 Member Posts: 191
    edited January 2017

    Thanks Kattis894--I am one of those getting a port soon (10th) and am nervous so thank you for the info.   Just another step along the journey.  Can you sleep ok on the side you have port installed?  I already am sleeping on back or left side due to mastectomy on right side so I hope I can still get comfortable after the port is in.

    RenneeCA, thanks for the info on the PT.  LOL at standing like a cadet.  Oh the joys (not) of all this craziness we have to endure!  I plan on asking dr about it at next apt and will go from there.

    Hope all the other Dec ladies are doing well, I am back to work tomorrow so hoping that goes well as I get ready to deal w treatment, etc.

    Hugs,

    Traci

  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited January 2017

    tlgio17 I was wondering same thing. As you know mine was LMX I still cant sleep on my left side which is my favorite. I am sleeping on back and right side and it really is not comfortable. Port will be on right side.

    Good luck with going back to work tomorrow. My surgeon wrote me off till March 9, 90 days. Which I am fine with as I have the boss from HE**. Chemo will be every 14 days so I dont see how can I do chemo and work. I do have the option to work from home but I dont want to mess up my disability payments.

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