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Diagnosed with DCIS after first mammogram. 32 yrs old.

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baileyjumper
baileyjumper Member Posts: 17
edited April 2023 in Just Diagnosed

Hi all. Sorry for the long post but just want to share my story.

I previously joined this forum when my mother was diagnosed with breast cancer (age 70) last October. Now…. I have my own diagnosis :(

After my mother's diagnosis her hospital offered me a genetic test and I tested positive for a double chek2 mutation. I had a genetic counseling call and was told this is a more rare mutation and that having two mutations is even more rare and under researched. From what is known, it was recommended I start breast cancer screenings now rather than wait until 40.

I had my first ever mammogram in Feb of this year. The technician told me it was common to get called back for follow-up tests because this was my first mammogram. So, when I was called a few days later and asked to return for an ultrasound, I didn't think much of it. I was shocked to hear at that ultrasound appointment that they found something that might be cancer and it would require a biopsy. A few weeks later I returned for a core needle biopsy. The results came back "intraductal papilloma with atypia". The nurse told me that because I am high-risk with my mutation they would want to surgical remove this papilloma.

I had to wait four weeks for a surgery consult appointment and the surgeon told me there was a very small chance this was actually cancer, but it could be.

On April 21st, less than a week ago, I had my excisional biopsy surgery. Yesterday I received the pathology report - DCIS (stage 0). ER and PR positive.

The silver lining is it is stage 0 and they already removed the cancerous cells with the surgery I had last week. But…. now I have to decide how to move forward with my treatment and I'm feeling lost about which decision is best. My surgeon explained I have two options:

  1. Radiation now. Followed by 5 years of tamoxifen and continued high-risk screenings every 6 months.
  2. Mastectomy with no follow up treatment. (now or at any point in the future)

A huge part of my dilemma is I am only 32 years old and I have no children. My husband and I have not made a decision whether or not we want kids. It's something we have seen as a possibility but not decided either way. If I start taking tamoxifen, I would absolutely not have the option of getting pregnant in the next five years because that mediation can cause birth defects. Again - I wasn't totally sold on having kids for sure - but I hadn't really made up my mind yet. A part of me doesn't want to have kids because with two genetic mutations I have a 100% chance that my mutation would be passed on to any biological children (just 1).

I'm terrified of a mastectomy. I helped my mom recover from hers just a few months ago and saw firsthand the aftermath of the surgery for her. I'm also worried about my self image and self esteem with this option.

Thank you for reading.

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  • salamandra
    salamandra Member Posts: 745
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    I'm sorry you are facing this now, but also want to say how great it is that they were able to catch it so early!

    Women do come off of tamoxifen for pregnancy. You could be on it for a year or two, come off for pregnancy, and go back on.

    I am trying to imagine what I might do in your shoes, had I been diagnosed a bit younger but at stage zero. I would also be scared of a mastectomy, but knowing what I know now about the lifelong risk of metastatic recurrence hanging over my head even with stage 1 cancer, I kind of wish I'd had that option. Did you get a sense from your doctors about the risk differential between mastectomy and tamoxifen, if there is any?

    I'd also say that your recovery from a mastectomy at 32 could very well be different and much easier than your mother's at 70.

  • baileyjumper
    baileyjumper Member Posts: 17
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    Thank you for your reply. I am grateful it was caught early as well. If my mother never would have been diagnosed and if I never would have had the genetic testing…. who knows what would have happened.

    In terms of risk, a big part of my dilemma is the lack of research and understanding about my mutation. I have seen studies out there saying a double Chek2 is similar risk to a BRCA in terms of risk. But…. risk of recurrence is still widely unknown. All I really know is the older I get, the greater the risk of recurrence.

    Yes, part of my thought is that if I do have to get a mastectomy one day, it would likely be far easier to go through at a younger age than an older one. But…. I also don't want to lose a part of my body. I'm worried about what I would look/feel like after. My mom also had no reconstruction.

    I will make a note to ask my Dr. about the risks/possibilities of going off of tamoxifen if needed for pregnancy. I am worried about the side effects of radiation and tamoxifen. I'm very prone to nausea and often fill ill and fatigued after taking certain medications, like pain medication. I'm worried about how it will make me feel.

  • triscuit
    triscuit Member Posts: 39
    edited April 2023
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    Hi bailey jumper. I also have a CHEK2 mutation, but not double. I was followed for years with several intraductal papillomas found on biopsy. My breast surgeon never pushed for removing them, but we stepped up the screening with MRIs alternating with mammo/ultrasound after I found out about the CHEK2. I became uncomfortable with it after having another biopsy (again, benign papilloma) and I went for a second opinion. That surgeon wanted another area biopsied and that turned out to be DCIS.

    I am 54, so in a different stage of life than you, but I chose bilateral mastectomy with implant reconstruction. I am 5 weeks out from the mastectomy and have tissue expanders. For me, I chose mastectomy to stop the constant surveillance and biopsy and the fear that this spot had been missed - what if other areas were missed? I also read that CHEK2 has an increased risk of both local recurrence and contralateral breast cancer and I didn't want to live my life in fear of when it was going to happen. I did not want to get to a stage of cancer where I had to get chemo. That being said it was a tough decision to make, and it felt very "unfair" that having Stage 0 cancer I was going to the "extreme" option. But the surgical pathology confirmed I made the right choice as there was more DCIS than expected and extensive atypia in both breasts. And I didn't need any radiation or chemo or hormonal therapy, which is a huge relief.

    What I will say is that if you are considering mastectomy, I want you to know that I am doing very well (just cleared to resume all normal activities) and I feel like the outcome is going to look really good. I was so afraid about that and my body image. I strongly considered going flat and not doing reconstruction. My plastic surgeon showed me a picture of an outcome with implants that changed my mind - someone similar in body type to me and the results looked so…normal. I feel really confident in my surgeon's skills and I was healthy and active before surgery which I think was in my favor, as your age would be. It was a tough couple of weeks physically and emotionally right after surgery, but turned a corner and I am feeling strong and positive.

    I'm so sorry you are in this position. I wish you the best with your choices. Did you meet with a genetic counselor? And with a plastic surgeon to discuss what all the options would be for your individual situation? There are a couple of facebook groups for CHEK2 by the way, if you haven't found them already. It's frustrating how little is known yet, but even over the 5 years I've known about it I'm seeing a definite increase in awareness and consideration in research. Best of luck to you.

  • baileyjumper
    baileyjumper Member Posts: 17
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    Thank you so much for your reply. What you wrote is exactly my fear as well. I don’t want to spend the rest of my life having more biopsies, more exams, etc. I just want it to be over and to not live in fear. Because I was diagnosed so young I do have a great fear of it coming back one day.

    I don’t meet with my surgeon until next week. I think if I did have a mastectomy I would go the implant route. The extra incision and recovery with the tissue method really just freaks me out. One of my concerns is I’ve read there is a risk of implants bursting. And as I’m so young that risk would be higher for me at some point in life.

    My biggest concern with mastectomy is what it would feel like after and my body image. I’m already having body image issues even with just the biopsy scar I have now. I hate my husband seeing me and it makes me feel “tainted”.

    @triscuit with the implant mastectomy, do you have any feeling at all in your breasts? Does it feel alien/foreign?

  • katg
    katg Member Posts: 223
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    Talk with the doctor. I think if we read to much we get more fear.

    I found a 5cm lump 2 years ago, and at 60 never had a mastectomy. Never thought i would get BS. None in my family, or so i thought.

    Two days before my chemo was to start, required to shrink my 5 cm tumor. I received the results from the genetics department. BRCA2. Likely from my Mom. 2 of my 4 siblings were also tested and carry BRCA2. My older sister does not wish to be tested.

    I love the genetics test just for the fact you got to find out super early!! Not having a lot of testing results to assist you is scary. I was supposed to have radiation after my left side mastectomy, but i was told radiation would not statistically help me. I have cancer that affects 2 % of the population.

    I am way older than you. I had skin saving mastectomies. At 60, I had my tbes and ovaries removed. BRCA2 risks tend to show in the ovaries, fallopian tubes and the breasts. Higher incidence of melanoma as well.

    I had thought my choices may have been different in my early 30's. I know there are forums on this site for those that are young. Not that you share the same genetic mutation, but the same types of choices. Scary. But what i have read in all the shares so far for you, I see you are looking out for you. Body image, what your husband may be feeling. All are legitimate and necessary. I would take to your doctor and the genetics team. What are the known risks, what on- going tests can you take. Drugs?

    Keep us posted

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
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    hi just wanted to jump in as a fellow survivor with a chek2 mutation. I was mid 40’s when diagnosed. I opted for a double mastectomy and reconstruction. My sister also has chek2 mutation with advanced stage ovarian cancer. We were diagnosed 6 months apart and are a year apart in age. I tell you this because I think chek2 is often minimized as a risk. And while ovarian cancer is not really linked to chek2 I think it and other cancers will be. Now you have stage 0 DCIS. But I was stage 1 IDC. So there was no way I was going to have a lumpectomy. For me the risk is too high. Our situations are slightly different. These decisions are tough. Let me know if you have any questions. Or if I can help in anyway.

  • baileyjumper
    baileyjumper Member Posts: 17
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    I totally agree that chek2 risk is often not accurately described. Especially in my case with two mutations. I’ve been seeing studies that suggest having two mutations puts your risk level in the same range as BRCA. Also seeing studies that two mutations makes diagnosis at a younger age way for likely. That certainly fits in my case. My twin brother also has two mutations and he had testicular cancer at 18.

  • baileyjumper
    baileyjumper Member Posts: 17
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    I also have concerns about going the tamoxifen route because of my age. After those five years….. then what? I take it even longer? My risk goes up again all before 40?

  • triscuit
    triscuit Member Posts: 39
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    I absolutely think that about chek2 also. I have 3 sisters - one had ovarian cancer - yes, everyone says ovarian is not linked to chek2 and they dismiss it as a risk (fortunately she is doing well). My younger sister had a rare cancer also not linked to it (chondrosarcoma) and she died within a year of diagnosis. This is why I was tested and why I made the choice for bilateral mastectomy and didn't even consider lumpectomy (even though a really struggled with the reality of it). Neither of them were or have been tested for chek2 but I would be very surprised if they didn't have it as well.

  • triscuit
    triscuit Member Posts: 39
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    There are risks with implants, which was why I was considering going flat for some time. But in talking to my plastic surgeon during the consult and doing more reading, implants have really changed and the risks are much less than they were in the past. I was satisfied by what I learned about that and comfortable with the risk. I takes a lot of pressure to burst an implant and that is unlikely. I think if you talk to a surgeon honestly about the risks and possible complications you'll get a better idea if that's something you are comfortable with or not. There are also options for reconstruction with your own tissue (autologous reconstruction) if implants are not something you want to do. I didn't want to choose that route but many are very happy with the natural feeling outcome of that. Again, hearing all the options from a surgeon is important.

    You asked how it feels and I will say it's too early to say for me. I have the tissue expanders and they do feel a bit alien. Until about 4 weeks out when I got my second fill I thought it was always going to be pretty uncomfortable, but that fill really helped it to be more normal looking and maybe eased some pressure of how the expanders sit. Every day I feel less bothered by them, I think about them much less. I'm wearing my regular bra again and it looks great and that made me feel better. I'm really looking forward to the exchange surgery in July to get to a nicer, soft outcome, I'm really hopeful about that. I hear that the exchange surgery is a breeze compared to mastectomy and opening the same incision (maybe even not as wide) is not a big deal. Oh, you asked about sensation -the nipples and the center of the breast are the weird numb feeling. I can feel much more as you move to the outer part of the breast away from the nipple. I don't know how much feeling will come back. I feel like as swelling has gone down I feel a little more. I have a relatively new relationship and physical touch and sensation was an issue I struggled with too. I feel like it's going to be different but ok, but again too soon to say much for me.

  • baileyjumper
    baileyjumper Member Posts: 17
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    Thank you so much this is really helpful. I’ve heard of the using your own tissue method but looking at how much more involved that surgery is - that absolutely horrifies me. If I do go mastectomy I think I’d go the implant route. I’ve also read that younger women might be a candidate for direct implants without expanders…. Wish I could talk to my surgeon sooner but have to wait til end of next week…. There is always more waiting. :(

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,080
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    One step implants, no TE’s, have little to do with the patient being young. I had my one step recon done at age 55, over eleven years ago. The biggest factor in determining suitability is having a skin sparing mx/bmx since that will be needed in lieu of expanding skin. As a result, using one’s own skin and not stretching it via expanders, your implants will generally be about the same size as your native breasts. One step implants, because of medical limitations due to skin removal, are a less common route to go and not as many plastic surgeons are well versed in the procedure but youth is not a factor (unless one’s age presents other health challenges).

  • salamandra
    salamandra Member Posts: 745
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    I usually have moderate to low issues with side effects from drugs, but tamoxifen wiped me out. On the other hand, toremifene, a sister drug, has been absolutely fine.

    My initial goal was 5 years, but now I'm aiming for 7 years, and to be honest as long as the side effects are so minimal, I'm hoping my oncologist will just let me stay on it.

    I guess what I mean is, you don't need to worry about how your body will react to the drugs - you can just try them and find out.

    There are departments that focus on high risk women like yourself. If your doctor is not part of a department like that, I think it could be a great idea to seek a second opinion/supplementary consultation from a specialized department. They will be the most up to do date on the research and options. For example, tamoxifen is only one of a family of several SERM drugs. Tamoxifen is one of the oldest, cheapest, and most studied, but it is not necessarily the best (either in the sense of side effects or in the sense of efficacy) for every woman for every need.

    A great oncologist should be able to counsel you about all your options, including fertility preservation, follow-up screening options, and possible timelines for decision making. For example - could you try hormonal treatment and see whether it agrees with you, and then opt for a mastectomy later. A good oncologist should be happy to have you consult with another oncologist with greater specialization or experience, and to coordinate with them for you treatment.

    I'll also say that social workers/social work services can be very helpful for talking through options with someone who has basic background health knowledge, counseling skills, and knowledge of your local healthcare/insurance landscape and cost and support options.

    I had just a few conversations with a social worker from Sharsheret, but it made a huge difference to me feeling confident and supported.

  • triscuit
    triscuit Member Posts: 39
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    I felt the same way about the extensive surgery for autologous reconstruction, but I hear a lot of people very happy with their results. Direct to implant might be an option for you. I wanted to do that and my PS said she would be willing if things looked ok during surgery. She felt during surgery that my skin condition was not what she wanted it to be (she said it was a little "angry") so expanders were placed to get a better result (more gradual expanding). I was told that if I did direct to implant I would end up a bit smaller than my original breast size. This wasn't a problem for me, but good to ask about.

    It's a lot of waiting for sure. Take your time in making your decision though. It's not a rush as much as you want to get this taken care of, it's not an emergency situation. You'll feel so much better when you have a plan in place.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
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    wow that’s interesting about your brother. All of my siblings carry the same chek2 mutation. Two of us have cancer in our 40’s. The other two don’t. Will be interesting to see what happens. The odds of all 4 of us having the chek2 mutation seems unlikely but here we are.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
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    so interesting! More research is needed in regards to chek2. I’m sure my siblings that have the chek2 mutation (but not cancer )must feel like ticking time bombs

  • baileyjumper
    baileyjumper Member Posts: 17
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    Thank you. I am seeing a high risk team already. I will keep these things in mind to ask about. I am sensitive to medication. Your point about different drugs if one doesn’t work out is interesting and is something I will ask my Dr. about to hear the possibilities.

    One of my biggest fears with the medication and radiation route as well is how the radiation would affect my skin. I do have sensitive skin and I worry about it causing permanent damage that would then later limit my reconstructive options.

    I haven’t heard of Sharsheret but I do have a peer mentor through FORCE I’ve been talking to since I discovered my mutation. That has been very helpful.

  • lotusconnie1999
    lotusconnie1999 Member Posts: 39
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    Baileyjumper, I am thinking of you. Any updates about your surgery plan? What type of reconstruction you plan to have? Good luck with everything!!!

  • baileyjumper
    baileyjumper Member Posts: 17
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    Thank you. Not really many updates yet. I’m going to be meeting with both a radiologist and a plastic surgeon to get all my options. I have until July to decide between radiation and tamoxifen or mastectomy.

  • baileyjumper
    baileyjumper Member Posts: 17
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    I FINALLY got the best news last week!!! The results of my DCISion test came back and I do NOT need radiation!!! So, the lumpectomy I already had is all I have to do for now.

    My oncologist does want to start me on Tamoxifen but she talked to me about a low dose of just 5mg for 3 years. She says most of her patients on this dose have no side effects.

    I am so happy this is over for now.

  • dsc
    dsc Member Posts: 50
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    so happy for you! 😊

  • tntnsd
    tntnsd Member Posts: 125
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    happy for you balley. Always glad hearing one of us with benign or the best result with least treatment to go through. Tamoxifen has some side effect but for many of us, it is doable, especially with such low dosage.

  • recoveringbelle
    recoveringbelle Member Posts: 23
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    Hi! That must have been a real shock to learn this concomitant w/ your Mother's experience. I'd think that could intensify certain challenges in your decision-making now, because you're directly watching the consequences of one type of breast cancer, presumably w/ a much more serious diagnosis w/ a less promising prognosis given her age.

    Three thoughts based on my own experience:

    First, I'm new here w/ current evaluation for new R BC w/ possible mets, but had a L mastectomy at 39 in 2006 for extensive DCIS that turned out afterwards (after I had pushed the doctors to do watchful waiting) to have been ADH—or, well, debatable. Docs at Mayo, Vanderbilt, Duke, and UNC argued about it—even had a case conference. What was disturbed me a lot was that I went in very informed, after the surprising dx that upended my entire busy working & parenting life, and asked specific questions about a disparity in radiology interpretations between two facilities that led me to question the dx. I suggested watchful waiting & wanted to discuss it w/ the radiologists, but was completely invalidated. But, it turned out that I'd been on the right track—which didn't exactly endear me to the pathologists. One even retroactively removed their "wrong" report from my official file, but another oncologist figured it out and added it back (I'd gotten all of my medical records at that point, suspecting they'd do this.) Had they done an unnecessary mastectomy on a 39-year-old single mother, one who'd explicitly raised concerns that should have been explored via a third opinion BEFORE the surgery?

    I was dx in late 2005, when the NCI had just come out with "overtreatment" concerns, and to fight for "watchful waiting" was very difficult. In retrospect, I would have planned to have a mastectomy, later, because the extensive high grade florid hyperplasia or whatever it was would likely have been problematic over time, and I'd have been facing MRIs every six months. But—very importantly— I would have done it w/o panicking about needing chemo, dropping out of a doctoral program necessary to move up in my career, losing a few consulting clients, lacking f/u care for so much blood loss that I had a ferritin of zero and ultimately had to have an iron infusion a few years later, and creating a medical crisis that caused my congenital EDS to go into overdrive and led to permanent disability and career loss today. I'd have planned it, while watching it for awhile.

    Related to potential iatrogenic harm, even 7 years later the well-meaning radiologists were insistent I should have one of those wire-type biopsies due to potential DCIS on the R breast, but I declined, despite their opposition, opting for watchful waiting. Three years later, it involuted, and—this is so funny— a new doc I had said, "Wow. You're so lucky that Doctor X insisted on watchful waiting!" Like it had been their idea and I had been a hypochrondriac who wanted the biopsy. I've found as a female patient—particularly w/ EDS but even this—that you just can't win. There's an org psych thing about medical culture, where however well-meaning, they reinforce each other and subconsciously discount medical any medical insights raised by patients. They're not evil—just human. It's an artifact of the field.

    In other words, please think for yourself and, whatever you decide, try to stand in that ground (and have a relative or close friend present) if/when one or more medical professionals try to override your reality. Make the decision best for you outside of that realm, after considering their and others' opinions, but try not to collapse into a 2-year-old mentally when in the presence of medical "authority." We all do it.


    Second, despite the problematic, overtreatment at the time, I was fortunate to be treated at one of the best institutions in the world that's located nearby, and a "silver lining" of mastectomy w/ reconstruction was that I came out of there w/ a figure like Barbie. I was single at the time and had always had small breasts (and was a size 2). The plastic surgeon really enjoyed doing the implant reconstruction w/ r implant for assymetry, and it looked and still looks AMAZING. It's funny—not that I was seeking a lot of male attention, but boy, men sure do notice a chest! I thought it was hilarious that I looked better after tx. Just sayin.' Sure, I've got a faded scar and I lost sensation on one side, but when I think what women had to go through in the past given unfair body image standards and no options . . . .



    Third, each to her own, but you're young, and there's watchful waiting. I'm a scholar but first and foremost I'm a Mom of thriving, joyous adult kids—hardest and best thing I ever did. I didn't breast-feed long—just 3 months w/ each—but it was so important to me and such a great memory. I'd be concerned that you might be getting sucked into a fast-paced medical sorting-process that, again however well-meaning, is biased toward intervention, intervention, intervention. And intervention can be amazing—a great blessing—as long as it's in the back seat, driven by you and your Quality of Life. Many people die WITH breast cancer, and many more with DCIS. DCIS can involute. If it were me—can't speak for you—knowing what I know now, I'd at least hold off on all hormonal therapy, radiation, chemo, or additional surgeries—take a breather, and check back in in 3-4 months. It's not inflammatory, or even Stage 1.

    I'd hate to see this treatment machine take over your identity and life when you've got your best decades ahead of you, to take away one of the most meaningful experiences a woman can have because of a 2% ? increased absolute risk per year. You could give all of that up. go through these challenging therapies, and then get slammed in a car wreck at 48. Risk ratios should be understood very carefully and calmly, not in a panic w/ tx providers—they mean well, but it's their culture & their job. YOU are in control here and can step back for a few months to ensure you've given it enough perspective.

    God bless and best of luck in deciding what's best for you!

  • baileyjumper
    baileyjumper Member Posts: 17
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    I’m so discouraged to be here posting again but - not even one year later and I’m back where I started. I had my first MRI scan and then an MRI guided biopsy was last week (which was difficult and uncomfortable). They found atypical cells again in this new spot and described it as “borderline DCIS”. So they will be scheduling me for another excisional biopsy surgery just like I had back in March. From there they will determine if it’s DCIS or not.

    I’ve been taking 5mg of Tamoxifen for several months now and have done well with it aside from leg cramps and fatigue. I’ve been hoping to reach a place of stability where I could go at least a year or two without surgery etc but 9 months later here I am. I expressed this concern to one of my Drs today and she said I have very active breast tissue and she thinks it likely I will very often get call backs after scans.

    It just never ends. I feel like a lab rat. I’m so tired of constantly being poked and prodded. The only way I have to cope is trying my best to ignore it all and not think of it. But then every time I have a scan etc I have to face it. I just feel hopeless and like I’ve lost the rest of my life to this horrible never ending cycle.

  • moderators
    moderators Posts: 8,289
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    @baileyjumper, we're sorry to hear that you find yourself back in this situation. As you approach the biopsy, know that we'll be thinking of you and sending you best wishes for a benign outcome. Meanwhile, please let us know how you're doing!

    Warmly,

    The Mods

  • needs.a.nap
    needs.a.nap Member Posts: 196
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    Hello @baileyjumper. I’m so sorry for what you are going through and how you are feeling. I just read through your whole thread here and was intrigued and impressed with all the great responses, then so pleased for you after your June 13th post … but then I read your post from yesterday and my heart sank. I can really feel your discouragement in your words.

    I think it’s safe to say that this isn’t the lifestyle any of us want, with drastic decisions to make, seemingly never-ending doctors’ appointments, scans, and the anxiety that goes with it all. It’s easy to get discouraged and fatigue doesn’t help matters!! You’ve had a lot to process this year and were/are facing difficult decisions. Not to mention however Tamoxifen may be affecting your emotional strength (it’s definitely affecting me, I’ve been on it for 3 months and I’ve gone from feeling pretty level to being on a weird hormonal rollercoaster). It’s understandable how you are feeling!!! Everyone keeps reminding me to take it one day at a time and I know that is wise advice, just hard to do at times. Somehow, one step at a time … and it’s all doable. Maybe not fun, but doable. (Personally I would get super annoyed at everyone telling me “you’ve got this” and how strong I was, so I won’t say that … but … give yourself some credit for the strength you have shown all year!!)

  • baileyjumper
    baileyjumper Member Posts: 17
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    Thank you for your kind words. My surgery consultation is in three days. I have so much PTSD from my last surgery that it’s dominating my life. I can’t even remember the last time I felt happy. I’ve been on the fence about balancing quality of life with all the tests they want me to. A big part of me would really rather stop doing scans, biopsies, etc and just live my life. My life doesn’t feel worth living the way it is now.

  • moderators
    moderators Posts: 8,289
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    I'm so sorry, @baileyjumper. I think @needs.a.nap nailed it completely. It's hard not to get discouraged when you do everything you're supposed to do, and go through what you went through just a year ago. The constant managing of physical side effects, in addition to the continuous emotional burden. It's exhausting. We will be thinking of you for your surgery consultation. Please let us know when you get any updates!

    Separately, perhaps you would be interested in joining one of our free early stage Zoom meet-ups. Since at the moment you're still essentially in the post-active treatment phase, you might benefit from the Bonded by Breast Cancer meet-ups. We tend to focus on processing the changes to one's identity after a breast cancer diagnosis, and going through active treatment and whatnot. It can be a nice source of support in addition to the BCO boards. Sometimes it's nice to just have that face-to-face connection (albeit virtually, but hearing others' voices, intonations and seeing the added body language can add a nice bit of intimacy). If you're interested, you can register for them here:

    Warmly,
    The Mods

  • needs.a.nap
    needs.a.nap Member Posts: 196
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    Hi @baileyjumper. We really have to get tough with ourselves to get through some aspects of breast cancer (or the threat of future bc) … in some respects I think it was easier for me to not have options. Mine was already invasive cancer when it was found and I wasn’t given a choice, I had to have a mastectomy. I understood what doing nothing would mean (=death eventually). I hated my only reasonable option!! And I’m trying to accept that my carefree self no longer exists. (It’s actually going fine, I’m not complaining!) But in your case, I can see how extra difficult it is to anticipate getting future cancer (which probably seems inevitable) and the need to scan and biopsy everything religiously … it’s not what you would ever imagine your life would be focused on at your age! It really is unfair. But … I know you can do this!! You can get through this next step - surgical consultation, then the next step, then the next. Please don’t try to do it alone … get support!! We are here for you. The online support group is wonderful … I encourage you to accept the offer from the moderators to join. It helped me immensely. Hang in there!!