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Just diagnosed for the 2nd time

AngelNicole81
AngelNicole81 Member Posts: 3
edited May 2021 in Just Diagnosed

I am 39 years of age and was just diagnosed with breast cancer for the 2nd time. I was 26 years of age my first diagnoses and was Triple Negative stage 2A. I was just diagnosed for the 2nd time with breast cancer, this time DCIS in the same breast again, which was the right breast. My first diagnoses, my surgeon performed a Lumpectomy. She said that she did not feel a mastectomy was necessary for me because of my age at the time of diagnoses. And she said that a Lumpectomy would be fine, along with radiation and chemotherapy. Now i am dealing with breast cancer again and am very scared and depressed. My surgeon says that I should have a mastectomy this time because he says that radiation can't be given to the breast twice. He only wants to perform a mastectomy on my right breast, but I told him that I want both breast removed this time so I don't have to worry about getting cancer in the other breast, but he says that is not necessary because with having a double mastectomy, he says that I will be taking a risk on getting an infection. Is this true? Also, he has set up for me to have breast reconstruction surgery. I don't know much about breast reconstruction. Would it be best to get breast implants instead or a Flap reconstruction? I really appreciate anyone who takes the time to read this and give me some advice. I am really scared.

Comments

  • 2019whatayear
    2019whatayear Member Posts: 463

    I'm sorry this completely sucks . Did you or will you have genetic testing? Any surgery has risks of infection so yes there is def a potential for infection. Overall a BMX ( according to research)does not improve overall survival so that is something to consider-

  • sondraf
    sondraf Member Posts: 1,578

    I agree with 2019 - given your age and the first diagnosis of TNBC, I would push for genetic testing. If you turn out to be BRCA+ of some form, then that gives absolute reason to have the double mastectomy.

  • GrizzlyIam
    GrizzlyIam Member Posts: 1

    Hi,

    My surgeon tried to discourage me from having a double mastectomy also using the the risk of infection excuse. Well, infection or recurrence? I kept insisting and finally a week before the surgery date he agreed. I was told to get another opinion if I was not getting what I wanted.

  • Mangosan99
    Mangosan99 Member Posts: 38

    I am so sorry you are going through this again. My mom had breast cancer twice, once in each breast, about 18 years apart so I think that helped inform me of what I would do if I was ever diagnosed. When I was diagnosed, it took a few months to come to the final decision to do a bilateral mastectomy but deep down I knew that is what I would do.

    So, take some time to get more than one opinion, have genetic testing, and talk to plastic surgeons about reconstruction options. You will know the right answer for you when you get more information.

  • LivinLife
    LivinLife Member Posts: 301

    It is important you are comfortable with the surgery decision - mastectomy or bilateral... I would encourage a 2nd opinion too - get some additional feedback. You can also stay with the first surgeon if you choose. I agree with giving yourself some time to learn about reconstruction options as well. There are some who wait months or a year though I think it depends on what type you're leaning towards? I'm not well versed in reconstruction.

    As far as infection risks.... I have a few different autoimmune issues which cause me to be a frequent flyer at the local wound clinic. My surgeon was still open to doing a bilateral mastectomy. She, for the first time, told me she would place a negative pressure wound vac over my incision near the end of surgery. I imagine insurance only approved that b/c of my medical issues though just saying if he's really concerned.... I wore that for a week after surgery and then they peeled it off.... Do what you are comfortable with after you explore options. If a surgeon is not open to what you want get another surgeon. You have to live with your decision-they don't- and you've had a recurrence now....

  • Lynnandtom
    Lynnandtom Member Posts: 1

    I am so sorry you have to deal with this twice. My first cancer was in 2000 when I was 36 ( est+, prog and H2 neg, no nodes). So I had a lumpectomy, chemo and radiation. Now last month , 21 years later, they find a new cancer in the same breast, different quadrant, and it's triple negative. I had my genetic testing done and all 35 markers came back negative, including the BC ones so that doesn't mean much. So if I have to have one mastectomy than I plan to have both off. I am not going thru the mammograms, ultrasounds and breast MRIs waiting for something in the other breast. I guess I will do the DIEP flap on the bad breast because I only have enough fat for one so an implant will have to go in eventually to the them to somewhat match.

    These are such tough decisions to make and I consulted 3 top oncologists and surgeons before opting for AC-T before surgery. I still question my choice but when you find the right doctor who listens to you and answers your questions as if you are an intelligent person you will know you are doing the right thing. Maybe you haven't found that surgeon yet?


    Wishing you luck and strength in your journey. Remember, YOU are the customer😊Make sure you are happy with the level of care and service you receive

  • moderators
    moderators Posts: 7,884

    Welcome, Lynnandtom, and thank you for sharing your story and being so candid with your experiences. We're so sorry you're headed down this road again, we're all here for you.

    The Mods

  • lillyishere
    lillyishere Member Posts: 770

    AngelNicole8, how comfortable would you be to keep breast tissue in your body after recurrence? Would you be OK anytime you'll need breast MRI, mammograms, etc. as a follow-up? If you are not comfortable, I would go with BMX. I had 84 genes checked and none of them were positive for breast cancer but I still got breast cancer. Over 80% of breast cancer cases are not genetic. My theory is that if the breast created the right environment for cancer once, it can do it again and overwrites all test. However, everyone is different on their comfort zone.

  • Julz42XX
    Julz42XX Member Posts: 20

    Girl, I feel ya! If I could do some things over I would. I thought I was doing everything correct, I went every year since I was 30 for regular mammograms but I felt a bump @41 ~all a sudden in my left breast very small tear drop/pea like size but come to find out another totally different cancer was in my other side by my chest muscle. 1 tumor genetic 1 tumor environment & 1 triple neg the other not! I did 6 months weekly chemo after 3 months tumors shrank but finished out treatment 3 more months. I didn't need radiation in 2017. 5-18 BMX/ removed nipples(decided to get implants) then 6/18 I did full hysterectomy because I am brca1 ovaries had 42% chance of recurring. ( I was trying to prevent ever having to do chemo again) 10/19 started having pains in back went to several oncologist then primary care , nerve specialist, chiropractic, massage did 2 mri 2 xrays (mainly was told it was sciatic & arthritis ) I was desperately hurting with everyday getting worse from 10-19 to may-20 with covid slowing appt & computer/phone appointments I don't think I was taking serious (I should have kept hounding oncologist only but the PA oncologist in October & April told me it was a primary care issue) blah blah 😒 i was relieved it wasn't cancer supposedly & wanted pet scans but 3 times was told I didn't need it, I was just to nice & really just wanted to crawl in my bed & try to sleep it off! Very long story short.
    Basically, u should do what you want to do! This is your life! I had a aunt that only had one removed then years later did it again with the other side. Mine obviously traveled through my bloodstream to my bones within 1&1/2 years but if I could do everything all over I would do the 1st part Chemo, BMX, hysterectomy, demand petscan, not wait weeks for primary care recommendations & Neroscience Dr to get to root of problem & NO implants I'd go FLAT even though my plastic surgeon was awesome they look good~ I think back pain is from implants) I would only bug oncologist about problems because I never got my 1st petscan til 6-20. Like I said I had a lot of delay that shouldn't have happen because of covid & I was to nice & trusted my drs to much! To this day I refuse to see the PA oncologist. I'm sad we all have to go through this but be your advocate, do what you will be happy with or get a 2nd or 3 rd opinion! God bless you & try to enjoy all that's possible.💚

  • DMinMN
    DMinMN Member Posts: 3

    Hi Ladies!

    Well... I have breast cancer again. ThumbsDown

    My first time was in April 2005. I was 35 years old. I am now 51.

    My tumor was 1.8 cm, Triple Negative.

    I had a lumpectomy, chemo and radiation and then a hysterectomy for Stage 0 Cervical Cancer.

    I have had 3 other scares that showed abnormal cells so I started taking Tamoxifen in 2014.

    Yesterday I went in for my annual MRI and Mammogram and the Radiologist came and found me and said they wanted to do an ultrasound because the MRI showed something. Never a good sign.

    The Ultrasound showed a mass approximately 2cm. So, she did a punch needle biopsy right away.

    I got the call this morning that it's cancer. 16 years later and it's happening again. Shocked

    I have an appt with my Oncologist on 4/6 and a consult appt with Surgeon on 4/12.

    I am 99.9% sure I want a mastectomy on this new side. Not sure about the previous side as I've had no issues there at all. I don't have details yet but I'm guessing chemo again.

    I keep telling myself that I will be fine, just like before. I don't want to work myself up into a panic like I did the first time. I am trying to be strong... but I am still rather terrified. I know my husband is so worried, too.

    I could really use a hug and positive thoughts please.

  • 2019whatayear
    2019whatayear Member Posts: 463

    really sorry to hear the crap news DMinMN.

    Since TN is much less likely to return after so many years, this may very well be a new cancer with a totally different and less aggressive pathology - it is good that they did the biopsy right there and already you have appt. My fingers are crossed that it turns out to be some slow growing cancer that is easy to treat

  • moderators
    moderators Posts: 7,884

    Welcome, DMinMN. We're so sorry to hear this, we know what a shock it is to process going through this all again. Sending you hugs and positive thoughts, we're all here for you.

    The Mods

  • DMinMN
    DMinMN Member Posts: 3

    Thanks so much, 2019whatayear and Mods. Heart


  • rah2464
    rah2464 Member Posts: 1,192

    DMinMN sending you hugs. So sorry this has happened again.

  • melbo
    melbo Member Posts: 266

    I’m sorry you’re going through this again — it truly sucks. One thing I want to point out though is that even if you have a double mastectomy you could *still* have another recurrence down the road. I know the Bilateral reduces the chances of another recurrence, but they can’t remove all of the breast tissue from your body, so you will still have at least a small chance of another recurrence down the road. I don’t know what the statistics are, but I know they exist if you want to find them.

  • DMinMN
    DMinMN Member Posts: 3

    Thanks Rah2464!

    Hi Melbo. Yes, I know that they can't remove everything but at this point I feel like MX may be the best thing to do since I've been high risk for 16 years and now I have a new cancer again in other breast. In this breast, I have had 3 past biopsies so something isn't right.

    My radiated breast from the first cancer has been stable.

    It's just really scary and I want to live many more years!

  • melbo
    melbo Member Posts: 266

    I know if I face another diagnosis while I’m still relatively young I will most likely go double mastectomy if for no other reason than the fact that bilateral reconstruction can make both sides match, whereas single reconstruction will likely have uneven results.

    It’s always tough making these decisions, but I’m surprised the doctor is trying to talk you out of bilateral. I always got the impression with my diagnosis that it was my choice which to choose - lumpectomy, single, or double — even though I was a really good candidate for lumpectomy. I went lumpectomy with the less is best attitude, but I will always question that decision, especially if I have a recurrence

  • LivinLife
    LivinLife Member Posts: 301

    I just want to welcome you DMin! As you already figured out this is a great site for support and information.. Please keep us updated on new developments with you, all right?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    AngelNicole, LynnandTom, and DMinMN, sorry that you are all facing this for a second time. As I wrote to someone else a few days ago, the 2-timers club is large. What many women with breast cancer aren't told by their doctors is that once we've been diagnosed a first time, we are actually higher risk than the average woman to be diagnosed again - not just with a recurrence (that's a separate concern and of course always a possibility) but with a completely new breast cancer which can develop in either breast. For all women, our risk of breast cancer risk increases as we get older, and this is also true for those previously diagnosed, which means that the further out we are from our first diagnosis, the higher risk we become to develop breast cancer for a second time.

    I had a MX with my first diagnosis. There was just a tiny bit of IDC but a huge amount of DCIS, so I didn't have a choice about the surgery - I would have opted for a lumpectomy if that had been medically feasible but it wasn't. The second time around,I had just a small IDC with no surrounding DCIS, and my surgeon recommended a lumpectomy. But to me, it was "2 strikes and you're out!" - I wasn't interested in waiting around for a 3rd strike. I told my surgeon that I'd be having a MX (and yes, I know that a MX doesn't guarantee that a local recurrence or a new localized cancer won't develop - but it does significantly reduce the risk - and I know a MX has no impact on the risk of mets). I was very aware that my BS doesn't favor unnecessary mastectomies, but he took my decision and immediately shifted gears towards planning for a MX. My body, my decision, and with a second diagnosis, there is nothing unreasonable about wanting a MX or BMX.

    What I found interesting on round two is that even though I knew my risk to be diagnosed again was high (and I'd had a few scares over the intervening years), and even though I thought that it would be easier the second time, having gone through it before and knowing what to expect, I actually found it to be much harder to deal with than my first diagnosis. Reading this board, I think that's pretty common. I was scared and very angry, for quite a long time. I mean let's face it - one diagnosis, well, that happens. But a second diagnosis, whether a recurrence or a new primary - even though it's going to hit too many of us, it's just not fair, is it?

    Good luck to all of you with your decisions about surgery. And remember - your doctor advises and recommends, but it's your decision. If your doctor doesn't agree with what you've decided, find a new doctor.

  • Julz42XX
    Julz42XX Member Posts: 20

    D,

    It is very scary, I totally agree! Big hugs, positive energy &a lot of prayers for the best outcome coming your way!💚

  • mikainsb
    mikainsb Member Posts: 31

    I really loathed my surgeon for insisting on bilateral upon my second diagnosis. (I have an extremely high genetic predisposition, with most women in my family having had breast cancer, and all oncologists felt bilateral was most appropriate for me.)

    In hindsight, I was so grateful not to have the incredible stress of regular mammograms after my bilateral. It was the right choice for me ultimately. I had flap reconstruction. I am glad not to have foreign stuff in my body and love my flatter tummy.

    I also had had radiation the first time around. Be prepared, your boobs will never look normal or symmetrical again, especially having had one side radiated.

    I personally think if you want bilateral, you should have bilateral. You have no way of knowing what the future holds, but gosh I would not want to do two separate mastectomies in life. There are women, often with genetic predispositions, who get bilateral prophylactically. I wonder if there is a reason your surgeon is concerned about infection for you.

    *I really want to support your doing what you feel is right for you.*

    And lastly, unfortunately, I have to say bilateral won't prevent you necessarily from another recurrence. My bilateral was in 2011. My recurrence in my liver was in 2015.

    Mastectomies are a big deal. Being rediagnosed is a big deal. Being scared and depressed seems a very normal response to me. I wish I could make it better. Hugs.


  • Nonni2015
    Nonni2015 Member Posts: 4

    I was diagnosed with TNBC on January 7, 2019, Stage IIIB, lymph node removal. I had surgery (mastectomy) chemo and radiation. I was told there was a 60% chance of recurrence if I did not choose to have chemo and radiation. If I decided to have chemo and radiation that 60% was cut down by 1/3rd....I took that chance. I was only cancer free for 18 months, not even 2 years...it has returned on the same side as my mastectomy and it appears it is inflammatory....meeting with oncologist tomorrow, having labs and PET scan done to see the severity of the recurrence and if it has traveled anywhere. The chemo just about broke me but I hung in due to belief I would beat it; the radiation burned my skin but I hung in because I believed I would beat it, at least for 4 to 5 years...18 months and aggressively returning... This really bites.

  • Carlsoda
    Carlsoda Member Posts: 120

    I was also recently diagnosed with recurrent breast cancer - same breast, lumpectomy and radiation and almost 5 years on tamoxifen. I guess there are no guarantees even if the statistics look good! This time I decided to just have a mastectomy on the “bad” side - my right breast hasn’t caused me any problems and hopefully it won’t in the future.

    Sending hugs to all of you dealing with this again!

  • edwards750
    edwards750 Member Posts: 1,568

    I really feel for you guys dealing with this insipid disease again. It's just not right especially with all you went through to keep a recurrence at bay.

    My sister and I were both DX with breast cancer. Me in 2011 and my sister in 2012. I had IDC, Stage 1b, Grade 1. I had a lumpectomy and 33 rounds of radiation. I also took Tamoxifen for 5 years. My Oncotype score was 11.

    My sister was DX with IBC - idk the stage or grade because she never shared that information. Her Oncotype score was intermediate. Don't know the actual number.

    She had a MX and took Arimidex. She had to have lung surgery because they found a node. She was allergic to the dye they use for scans. One of the meds they prescribed ended up damaging her liver. She had her first recurrence almost 4 years later at the MX scar. They did radiation this time.

    6 months later it came back with a vengeance. They tried chemo but decided after 2 treatments she wouldn't survive anymore. She became jaundiced. She was so sick. She lived in Georgia - I live in Tennessee- and she came here for a second opinion when her doctors in Georgia told her she had 3 months.

    The doctors here gave her a glimmer of hope that didn't last long. It was in her lungs and liver. She lived 2 weeks. My heart is totally broken. She was my only sister and I loved her very much.

    Just when I thought there was progress in the search for a cure this happened so I think we are losing the battle too often.

    Good luck ladies.

    Diane

  • AngelNicole81
    AngelNicole81 Member Posts: 3

    Thanks everyone for your replies. I had a mastectomy of my right breast and reconstruction surgery on April 20th. I had BRCA 1 and 2 testing and was negative. I was also tested for 36 other genes which I were negative for all 36 genes as well. Prior to me having the surgery, my surgeon referred me to see a plastic surgeon whom he said was a good surgeon who did good work. I choose to get a Latissimus Dorsi flap. A few weeks prior to my surgery, the surgeon took measurements of my back and said that I had enough fat on my back for him to make me a breast. He said that my new breast would look better than the infected breast that got removed. When I was first diagnosed with breast cancer back in 2007, I chose a lumpectomy in my right breast, so the right breast was smaller than the left. But after the surgery, there is no breast there at all. The doctor did not even perform my reconstruction because he said that I did not have enough fat on my back for him to make a breast. I feel very angry because this is not what was told to me on my initial visit with him. A week after the surgery when I went to see him for my appointment, he apologized and told me his mistake. He said that he thought there would enough fat on my back for him to make a breast. He did a terrible job. Can I take any legal action against him?


    I am very grateful to be alive, but If he were not able to do my surgery, i felt he should have just been honest and said that from the beginning. He says that I should not get breast implants because they will turn hard like baseball bats. But what else am I suppose to do if I don't have enough body fat for a breast reconstruction?

  • hahlyn
    hahlyn Member Posts: 128

    Hello

    I too was diagnosed with a recurrence. Honestly in 2016 I honestly thought if I get through these 6 treatments of TCHP I would be okay. My oncologist said we don't know anyone who has completed all 6 treatments so I was determined! it nearly killed me but I made it damn it! Only to have a lumpectomy and to be told there was 3rd tumor that was hiding and oh it's triple negative! Oh and you have to have more chemo this time the AC the red devil. Sweet Jesus! I felt like I was in the twilight zone when I was told this. So I push on complete the 4 DD AC treatments and end with 6 weeks 33 rounds of radiation. Breast burned you name it I had it. Fast forward to Oct 2020 mammogram calcification is found confirmed breast cancer again. This time mastectomy...okay take the breast I am okay with that. 5mm they found I figure okay but what I didn't expect was more chemo. I said it's 5mm my breast is gone why why???? Well it's tnbc again and we want to be safe.

    I am currently on TC taxotere and cytoxan number #2 I am a woman who has had now 8 different chemo meds. This second time around as someone stated is harder. I'm as super angry about and it just isn't fair. I understand it can come back it's just not fair to us. 1 time should be it!

    Anywho thank you for letting me rant. I pray we all beat this and we come out even better and stronger!

    Take care

    Hahlyn





  • VJSL8
    VJSL8 Member Posts: 486

    Been there done that 11 years ago. My 2nd time with BC, i opted for immediate bilateral masectecomy with DIEP flap reconstruction. I don't regret any of it. I was told too that I didn't need to have both off but I had had a biopsy on the other side which we were watching.

    It's your body, your decision. Maybe see a second surgeon in a different office for a 2nd opinion. I saw 3 surgeons before I made my choice.

    Good luck!