Recurrence after bilat mastectomy?

Options
13233343537

Comments

  • DebAL
    DebAL Member Posts: 877
    edited July 2020

    not stupid mavericksmom! In addition to skin area mets can find its way to connective tissue and muscle. In my case my tumor was very close to pectoralis muscle. My surgeon actually shaved off a piece of the muscle to be sure I had clear margins. I think it was 7mm margin. Hope this helps! Take care

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited July 2020

    The chest wall basically everything to be found around the outer rib cage, if I understand correctly. My latest recurrence was on the chest wall/axilla area and there was cancer tangled up around muscles, ribs, an artery, a vein, and right next to a nerve. Just had surgery to remove all that. Ugh.

  • helenlouise
    helenlouise Member Posts: 420
    edited July 2020

    hi buttons, I hope all went well with your surgery.

    I avoided further surgery. Once the ulcer on my chest wall was confirmed as cancer the surgeons decided it was more important to treat systemically. I was pleased because it was looking like a chest wall resection. Then bonus the cancer had morphed so now in standard treatment with H&P.

    I hope you have recovered and are feeling well.

    Thinking of you!

  • Jons_girl
    Jons_girl Member Posts: 696
    edited July 2020

    moth: what liver tests would be off that could be considered connected to cancer?

    Mavericksmom: I hope you don’t have a recurrence. Can I ask you (maybe I missed you sharing this already) how was your ILC caught the second time you were diagnosed? Did you feel it or was it caught on diagnostic

  • moth
    moth Member Posts: 4,800
    edited July 2020

    "moth: what liver tests would be off that could be considered connected to cancer:

    So many - becasue the liver does so much. But small tumors might not trigger any change in function for a while so it's not definitive

    -elevated liver enzymes: ALT, ALP, LAST, GGT, plus bilirubin seem to be the standard ones

    -low albumin and total protein

    -low rbc in absence of iron or b12 deficiency

    -very low cholesterol and triglycerides

    -elevated glucose, maybe even type 2 diabetes onset

    Also during regular physical exams the physician should be palpating the liver. There's a maneuver where they ask you to breathe, breathe out, and then they dig in the hands deep, to feel the edges if the liver. Tender areas may mean nothing - too much wine or a heavy meal maybe. Or it might be something. They can also feel changes in the size of the liver that way.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited July 2020

    Very interesting Moth. Thank you for sharing.

    Mavericksmom, did you meet your MO? How did it go?

  • mk71
    mk71 Member Posts: 1
    edited July 2020

    I’m scheduled to have reconstruction with latisimus dorsi flap in ten days. Any tips for recovery?  The nurses say it will be very similar to the bilateral Mx. 

  • Jons_girl
    Jons_girl Member Posts: 696
    edited July 2020

    moth:

    Thank you for sharing that info. I had questioned my alt and ast last time I had my bloodwork recently. They were just above normal. My ast I think was 50. Just above normal. But my alt has been in the 20s and doubled to 40s. So my question is if there is a issue would the numbers be in the 100s?

    I don’t know if my ggt or fast was ever tested. Should I ask for that? What is a fast test?

    My glucose is good and my bili has been fine.

    But my ast and alt were not in normal range. So was curious regarding that. Dr wasn’t concerned tho. And I don’t think I’ve ever had a manual liver test like you described??

  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2020

    Hi, yes, I saw my MO last week and will have an ultrasound done on Tues afternoon. I suspect it is a cyst. There is another area below it that I felt was scar tissue and didn't mention to the MO, but she found it and said she wanted them to US that too. The US will be basically in the same area for both lumps. They feel very different to me. I do not feel it is cancer, I just want someone to confirm that it isn't.. The MO said I was absolutely right to come in and have her look at it. She said most likely it is benign, but she wanted it tested to find out what the spots are. I am not stressed over it. While I strongly feel it is benign, if it turned out to be cancer I am better off knowing and getting it treated now.

    Jons_girl, my ILC was found on ultrasound. I went in for a diagnostic mammogram. My gynecologist ordered it and it was basically my yearly screening mammogram, but she wanted a diagnostic because she said they are more detailed. I mentioned to her that I had almost constant pain in a particular area. I didn't suspect cancer because I was always told after my IDC in 2003, that pain is not a symptom of cancer. I know now that isn't true. I don't think anything showed up on the mammogram but the radiologist wanted an US to double check because of the pain I felt. I had the US and the technician went out of the room after taking measurements and came back in with the radiologist. They did a few more views and then I was told I needed a biopsy.

    I literally went into shock when I received the results of the biopsy as I was 100% sure I didn't have cancer. I learned more about breast cancer in these past 18 months than I had in the 15 years between diagnoses.

    I also saw a genetic risk assessment counselor last week. I had genetic testing in 2004 and again in 2010 for BRCA genes and I am neg. I am now being tested for other genes that could very well also have an effect on my risk of breast cancer. It was so interesting to me. I assumed my mother's side of my family was more likely the cause because my mom, two of three sister and my cousin on my mom's side all had breast cancer. The counselor however, thinks my father's side of the family is more likely the side I should be concerned with. Long story, but she made her case and she definitely had a point! The results won't be back for about 3 weeks.


  • Jons_girl
    Jons_girl Member Posts: 696
    edited July 2020

    Mavericksmom: That is interesting about the genetic testing. I am negative for brca too. But have quite a bit of cancer in one side of my family. I do think they still haven't made genetic connections to cancer. They haven't looked at all genes yet. They still have alot to keep learning about cancer and its connection to our genes. I think some families with so much cancer in them....there has to be a connection. But I think they will find that there are some genes that haven't been connected yet to cancer but may be connected in the future. Not that I want to have a cancer connected gene. But it would explain why we have cancer in our family.

    I hope all goes well with your diagnostic tests on Tuesday. Keep us posted on how that goes ok? Will say a prayer all goes well. Sending a hug your way!

  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2020

    Well, it wasn't a cyst, but it is benign! The radiologist said it was fat necrosis, which my MO suspected. She was super nice though. I could see the screen the whole time so I feel confident in the finding. She said to have another in six months just to make sure it isn't getting larger. I thought that was a little strange, but my MO also said that could happen. Must be a standard "safeguard" or something? They also gave me a number to call if I decide to cancel. Sounds like I will be canceling. I see my MO in November so I will decide then. I kind of wished they would take it out, only because I am finding it annoying, but that probably isn't a good idea with a fake boob. I don't want to create more fat necrosis. Great feeling knowing it isn't cancer! Now I can truly enjoy the rest of the summer!

  • Jons_girl
    Jons_girl Member Posts: 696
    edited July 2020

    Ohhhh that is wonderful news! Thank you for letting us know! Yes I hope you have a wonderful Summer!!

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2020

    Yay!! And yes, the 6 month follow-up is standard procedure.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2020

    Mavrick's Mom - Hooray. Great news.

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited July 2020

    Mavericksmo, excellent news! Where is the champagne for celebration.

    The Seven Best Champagne Glasses

  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2020

    Thanks everyone! LilyWasHere, where IS the champagne, indeed! LOL

  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2020

    I received the written report of my US yesterday. I am still fairly confident in the "fat necrosis" diagnosis, but was a bit surprised by some of the comments. The area that my doctor found that I knew was there and wasn't concerned about, was listed as isoechoic mass with small cystic areas. That makes sense to me as it did feel like much of the scar tissue around it. The one I was concerned about was listed as an oval, circumscribed, mixed echogenicity mass containing cystic areas and was larger than I thought, a little over 2 cm.

    I realize this still leans towards fat necrosis and I don't plan to do anything other than keep my appointment with my MO in November and have the second US in January. Even so, this report gave me an uneasy feeling, possibly because the radiologist never mentioned cysts as being part of the picture. I actually thought she said it wasn't a cyst, which I guess could be correct but I don't know what the difference is between a cyst and cystic areas? Does that mean areas with a lot of tiny cysts? I remember reading that cysts have something to do with fat necrosis, but like so many things, I don't remember where I read it and can't find it.

    Just wondering if this is a typical fat necrosis finding. I am assuming it is, but would feel better hearing others had the same. I should mention it was listed as a BIRADS 3.

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2020

    A BIRADs 3 means that the Radiologist assesses a less than 2% risk that what the imaging shows might be cancer. The 6 month follow-up is used to assess stability, which further confirms that the lesion is benign.

    Here's a description of what fat necrosis looks like on an ultrasound:

    "On sonography, the appearance of fat necrosis ranges from a solid hypoechoic mass with posterior acoustic shadowing to complex intracystic masses that evolve over time. These features depict the histological evolution of fat necrosis. Fat necrosis may appear as cystic or solid masses. Cystic lesions appear complex with mural nodules or internal echogenic bands. Solid masses have circumscribed or ill-defined margins and are often associated with distortion of the breast parenchyma. In a retrospective study of the clinical, mammographic, and sonographic features of fat necrosis by Bilgen et al., 26.9% of lesions demonstrated increased echogenicity of the subcutaneous tissue with or without small cysts, 16.6% were anechoic masses with posterior acoustic enhancement, 14.2% were solid-appearing masses, 11.1% had cystic masses with internal echoes, and 3.9% had cystic masses with mural nodules. A specific sonographic indicator of fat necrosis is a mass with echogenic internal bands that shift in orientation with changes in patient position." Fat Necrosis of the Breast: A Pictorial Review of the Mammographic, Ultrasound, CT, and MRI Findings with Histopathologic Correlation

    .

    And this article on masses seen on ultrasounds explains which descriptors are indications of a benign mass:

    "Breast ultrasound: criteria for benign lesions

    Several studies have described the sonographic characteristics commonly seen in benign lesions of the breast:

    1. Smooth and well circumscribed
    2. Hyperechoic, isoechoic or mildly hypoechoic
    3. Thin echogenic capsule
    4. Ellipsoid shape, with the maximum diameter being in the transverse plane
    5. Three or fewer gentle lobulations
    6. Absence of any malignant findings"

    Ultrasound characterization of breast masses

    .

    From both of these articles, it appears that descriptions on your report seem to hit all the key words to suggest that this is benign.

    Not that anyone else's experience is particularly relevant since every situation is different, but I've had a few BIRADs3 over the years, and none of them ever amounted to anything, not even the need for a biopsy.

    Hope this helps.


  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2020

    THANK YOU BEESIE!!!!!!! The articles made me feel a lot more confident that these are benign! I felt very confident when I had the US because the radiologist was the same one who has read all my films over the past year and also performed my biopsy in 2018. I trust her. I only felt a bit of uncertainty after reading the actual report as there were a few surprises in the wording from what I was expecting. Reading those articles made me feel the same as I did when I left the US room and for that I truly thank you!

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2020

    Glad the information was useful. I have to admit that I was surprised by the description of fat necrosis. I didn't realize that it could appear with cystic components, although I knew that the description of your mass had all the right words to indicate that it's highly likely to be benign. I had a biopsy once for what turned out to be fat necrosis, but mine showed up as a solid mass. I guess that's why the biopsy was necessary - it was not as clear from the imaging that it was fat necrosis and therefore benign.



  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited July 2020

    Maverick - sounds like it is benign. Hooray!!!! Check with your insurance about genetic testing. Even though it is the 3rd time BC for me (twice left and now right), with lumpectomy, radiation, tamoxifen the first time; chemo, bi-lateral, tamoxifen the second time; Ibrance and Arimidex this time, Insurance denied the claim for genetic test of over 20 markers, saying it was irrelevant to diagnosis or treatment. The Bastards. I'm pretty sure the lab (Invitae) that did the test is going to pick up almost all of the cost $1500.

  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2020

    BlueGirlRedState, my tests were run at Invitae too! I had to pay for them, $250, prior to testing my blood. I had a choice of going with them or Myriad, the company that did my previous testing for BRCA genes. I chose Invitae because they do genes for MDS, which my sister died from. Myriad doesn't do that test, but I wouldn't have had to pay anything if I had more tests done through them. I wanted the MDS gene testing so I put out the money. I have an appointment next Friday with my MO who also works for the genetics department and my genetic counselor to go over the results.

    Beesie, glad you learned something too. I also felt better knowing you had a lot of BIRAD 3's, not that I am happy you had them, but just to know others do and they are benign.

  • Badboobagain
    Badboobagain Member Posts: 2
    edited July 2020

    I have just been diagnosed with IDC (.7 cm, unknown stage, grade 2, HR/PR+, HER2-). Getting my scans tomorrow. I had LCIS in my left and DCIS multifocal in my right in 2007 and opted for bilateral mastectomy so I would be done with it and never have to deal with it again. No other treatment was recommended. In 2012, I had a recurrence of DCIS in my right breast and had a "revision" of my mastectomy. This year's lesion is just under the skin/scar of my right breast. I have virtually no breast tissue left and so I'm girding my loins for next week's meeting with the surgeon and oncologist. More mad than scared at this point.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited July 2020

    BadBoobAgain - I'm sorry you are going through this again. I too thought a bilateral would end it all. This is the 3rd time for me, twice left, now R-axilla Taking Ibrance and Arimidex. Tumor shrunk from 2.5 cm to 7mm , so seems to be working. Oncologist also had a genetic test, over 20 known markers checked, I did not have any. PET scan Sept 2019 showed no metastasis. Hope everything goes as well as it can for you.

    2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.

    6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Long story short, imaging for clot, lymphatic therapist. More imaging, biopsy 8/2019, 9/2019. Started Ibrance and Arimidex. Tumor shrunk from 2.5 cm (Sept 2019) to 7 mm (April 2020). Hoping scan in August shows more shrinking, with luck it will shrink to oblivion. Oncologist thinks I should consider surgery, but I am very concerned about nerves, tendons, muscles, and worsening lymphedema. So will see what August shows.



  • Moderators
    Moderators Member Posts: 25,912
    edited July 2020

    Badboobagain, so sorry you are back dealing with this. We're glad you found our community, and please let us know how we can be there for you.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2020

    BadBoo - sorry you have to be back. I would definitely get a second and a third opinion.

    If you had a BMX in 2007, that should have scooped out everything. Yes, there can be a recurrence. I had a distant recurrence in a lymph node by my collar bone. But still, they went back in in 2012 and did a revision of the first mastectomy - and now again? I agree. I could have been madder than hell the second time but apoplectic the third. Sounds like your surgeon has failed you. Or the treatment proscribed was incorrect? Or??? Did you have chemo or rads either time? Please do go see a different breast surgeon for at least one second opinion. If you went to a general surgeon before, so go see a specialist breast surgeon. And whether you have or have not had chemo &/or rads, please go see a medical oncologist (MO) for a consult. And please make sure you have a CT and an MRI and a PET/CT this time - before and after.

  • KBeee
    KBeee Member Posts: 5,109
    edited July 2020

    Badboobagain, I am sorry you are dealing with this again. Even when they get all breast tissue possible, a tiny bit remains, and it only takes a couple of cells. Hoping you have a treatment plan in place soon.

  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited July 2020

    Badboobagain, how did your recurrences present? Lump at incision? Can you offer more information on your pathology reports?

    Really hope you come back and update.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited July 2020

    3rd time BC for me (2009, 2016, 2019). First 2 left, this one right, 2nd time did a bilateral. 2nd and third time different oncologist and surgeon than the first. Ocologist thinks each is a new cancer, but admits there is know of knowing since cancer tends to mutate so much. Maybe it is her faith in Txs ? Time between 2nd and 3rd ? Left vs right? No known markers in genetic test. From reading, it sounds as if cancer can take years before a lump is detected. Also, surgery does nothing for rogue cells. Bi-lateral does not remove all breast tissue, it can't. I do not regret the decision to do a bilateral when only left had the cancer at the time. F the big C.

  • Badboobagain
    Badboobagain Member Posts: 2
    edited July 2020

    I'm back and thanks to all who responded. CT and Bone scans are negative and I had an MRI this morning to see where this cancer has gotten to in my reconstructed breast. In answer to some of you, when I was first diagnosed with DCIS in 2007, I had a second opinion on my biopsy (confirmed the initial read) and the mastectomy surgery was done at Johns Hopkins. I had close margins and, upon presentation of my case to the tumor board, they recommended no further treatment. BRACA 1 and 2 negative. However, they decided that I should have an annual MRI to monitor for local recurrence. That's how they found my small recurrence of DCIS in 2012. The "revision" of my mastectomy was done at the University of Kansas Medical Center by a different surgeon, the same year in which the Center was recognized as a National Cancer Institute-Designated Cancer Center, so I had good confidence in my care. Again, no further treatment was recommended. Every annual MRI since 2012 has been negative, including the one I had in Fall of 2019. I was no longer being seen by an oncologist, but rather by a nurse practitioner who runs the very wonderful survivorship center, having "graduated" to that protocol in 2015. I found this tumor myself, a tiny pebble I could feel just under the surface of my scar. My surgeon from 2012 has moved out of state, so tomorrow I will be seen by the Department Head, who came to KU last year from MD Anderson. Needless to say, both the surgeon and the Oncology Department are very interested in my case. I have a lot of questions -- including about getting a second opinion on the diagnosis. Also, I just had my blood drawn for the Myriad multi-gene test.

    I'll keep you all posted and thank you for your responses!

Categories