Diagnosis in December, just home now to deal with it
I mentioned this in someone else's thread but just to recap….
I had my mammogram in October, called back a week later for another at the hospital. Not worried, this has happened twice before. It was recommended that I have a biopsy so I did…but that didn't happen until later in November. So I waited…
Now, last year I had booked a seven week holiday in Mexico for December and January. Omicron was just being talked about in early December but we decided we would go. I still hadn't heard anything about the biopsy. Literally the second my suitcase was going through security my cell rang…cancer clinic. Diagnosed with DCIS, grade 2. They told me to go on holiday, don't worry….so I did. I did not worry, it was so incredibly nice to have that time and I enjoyed every second.
Home now, have an appointment with the surgeon on the 11th of February (had to wait two weeks after international travel). I am slightly nervous but just want to deal with this.
My biggest concern is over treatment. I've already been told I'll likely have a lumpectomy, radiation and hormones…seriously…that seems excessive. Don't want radiation. I will really fight that. No radiation clinic here, would have to travel and stay week by week…
Will stay updated here. Anyone else in this situation?
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Buzzbomb, do you mean grade 2 DCIS? Treatment for Stage 2 breast cancer would certainly need to include lumpectomy + radiation (or mastectomy) and hormone therapy. Possibly chemo as well. Treatment for grade 2 DCIS normally would follow the protocol you mentioned, but depending on the size of the DCIS, the size of the surgical margins, and your risk tolerance, there could be more flexibility.
For example, while radiation is standard after a lumpectomy, and reduces recurrence risk by 50%, if you have a small single focus of DCIS and if your surgeon achieves wide surgical margins, your recurrence risk might be low enough that you are comfortable skipping rads. Ultimately the decisions on treatment are yours.
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thanks, fixed my mistake. You are right, stage zero, grade 2
Thanks for your comments, appreciated
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The information here might be helpful to you:
Topic: A layperson's guide to DCIS https://community.breastcancer.org/forum/68/topics...
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thanks again. I have done all the reading but do appreciate the help from you.
A little about myself. I am retired geologist, almost 65 (April). Love to lift weights and walk. One grown son, one sweet husand
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Buzzbomb - I chose a mastectomy to avoid continual call backs after 40 years. Whatever your treatment, if you start back gradually you'll be lifting again in no time. I can't do chin ups, but then I never could before BC anyway(LOL). It gets so much easier once you have the treatment set. If you can't agree with your oncologist about rads, you should probably get a second opinion.
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Buzzbomb - I just finished three weeks of partial breast irradiation for my DCIS, and it wasn't bad at all. You have to look pretty hard just to notice that it's a wee bit pink. Breath holds are not difficult at all. I'm fortunate that I live close by, so I don't have your logistics issue. No other treatments because it was ER-. Margins were widely negative (other than where it came up against the chest wall) but with the grade 3, I needed the radiation. Let me know if I can answer any other questions.
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thanks everyone for your insights! It is so much appreciated.
Now I have to wait for the surgery, then I will know more. I will certainly pick your brains when I have a better idea of what’s going on….
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I have stage 0 DCIS, low grade, and just had lumpectomy 3 days ago. I am going to speak with an oncologist to get more information about radiation and hormone therapy. But since my lesion was on my left breast, right over my heart, I am hesitant to get radiation (possible side effect of heart damage). I do not want side effects of medications. I am seeing a holistic doctor and revamping lifestyle, diet, supplements, etc. I am waiting pathology results to find out if my margins were clear, which I expect they likely are. If so, it is highly possible I will decline radiation and medication, unless the oncologist reveals information to me causes me to change my mind. At this point, I am unable to locate any research regarding women who have stage 0 DCIS and decline radiation and medication. I am only finding women who are generously sharing their stories, which gives me hope.
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You may find this of interest-Go to Columbia University, Irving Medical Center website and copy/paste into the search box this article title (this site won't allow sharing of weblinks):
"Stage Zero" Breast Cancer: What's the Optimal Treatment for DCIS?
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I had stage 0 DCIS; I had a BMX with sentinal node bioposy. Totally clear great margins. I was ER/PR negative so I didn't have any further treatment of any kind. Exactly 2 years down the road, a local recurrence was discovered in a lymph node by my collar bone. Chemo, surgery, more chemo, radiation..... So for the last 5 years, I've wondered what else I could have done the first time.
I believe holistic medicine can be a good complement to traditional medicine, but I don't think it can take the place of treatment by traditional docs.
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The standard of care recommendations are based on statistical outcomes for large numbers of women, with the idea of identifying at what point a treatment is likely to do more good than harm. An individual doctor might recommend to do more or less than the standard of care, depending on the patient's individual situation and of course that doctor's own interpretation of the data and experience. There are some doctors who are incredibly cautious and likely to go on the strict side for everything, and I could see potentially resulting in a situation of 'excessive' treatment, but in general, it seems to me that there is enough good information and evidence behind the standards of care that the word 'excessive' wouldn't really apply to the treatment itself.
Every individual could have their own good reasons for seeking or declining different treatment, but that wouldn't be because the treatment itself is excessive but because of their individual situation.
I really think the most important thing is to have a doctor you have confidence in, with whom you can have an honest and clear conversation about their interpretation of the risk/benefit analysis in the abstract, and also someone who will listen and confer with you about how it applies to you specifically based on both your physical and emotional concerns. That will help you make truly informed decisions that you can feel good about, regardless of the outcome.
Something I would caution against is pre-determining your treatment modalities alone (before your meeting with your doctor) and prematurely (before you have the full pathology). If you have a good doctor, it's really helpful to be open to what they suggest. For example, depending on the situation, your concerns about radiation might be addressed with IORT (intraoperative radiation therapy) - one blast of radiation they do during the surgery that doesn't require repeated follow up visits. But you will need to have that conversation with your doctor to find out whether it's something that would be available and make sense for you. On the other hand, you may end up part of that unlucky (and not common) subset of women whose DCIS pathology reveals invasive breast cancer, which would add a whole other layer of information necessary for you to make your final decisions.
Finally I want to put in a good word for hormones.
When my gynecologist found my lump, she was was cautious enough to refer me for follow-up, but also felt really optimistic that it wouldn't be cancer. Based on my family history, she recommended genetic testing and I got that test that same day at her office. Those test results came back both negative for any known genetic mutations of interest, but also with something like a 57% lifetime risk of breast cancer. As it happened, my breast cancer was confirmed around the same time those results came back. But I've sometimes thought, knowing what I know now, what might I have done with that information in the absence of an actual diagnosis?
I honestly don't know if I would have had the will for a prophylactic mastectomy. I was under 40 and single, and the thought of losing my breasts was incredibly disheartening (something I realized while I was waiting for my surgical appointment at which lumpectomy was recommended). On the other hand, I was also under 40 (i.e. relatively young) and had lost my mother twenty years earlier to metastasized breast cancer. So my motivation to avoid that would've been quite strong even without an invasive cancer diagnosis. I don't know whether they would have offered me prophylactic hormone therapy, but from where I'm sitting now, it would've been a great way to reduce my risk and save my breasts.
I say that as someone who actually had tremendous difficulty with tamoxifen, and ended up having to discontinue it! But something that many people don't know (and that you'd have no reason to know) is that there are many different forms of hormonal therapy and their side effects vary from person to person! (Like hormonal birth control - one person could take one and be fine, another person could take the same one and have it be intolerable, and there's no way to know how any individual drug will affect you except by trying it). I ended up on toremifene, which is used as an alternative to tamoxifen for prevention of recurrence abroad, and for advanced cancer in the USA. But there are at least two other SERMs as well that are used in the USA prophylactically. Menopausal women have all the SERMS plus three AIs. Many many women are able to take hormonal therapy without any. meaningful negative side effects (even if, like me, they may not have found the right drug on their first try).
This may be a wrong-read on my part, but my concern reading your post is that you may be taking DCIS too lightly or too seriously in a way that may cause you to miss a truly amazing (from my perspective) opportunity to avoid invasive cancer.
Having had invasive cancer, even one that was relatively a pretty best-case scenario, and now living with the knowledge that there's a good chance it's already in my blood/body waiting for its chance to come back, the idea of going "back" to where you are and having the possibility of helping to prevent the invasive cancer and the lifelong risks that come along with it, would feel like an immeasurable gift.
But, that is through my own lens, my age, my experience watching my mother die, my self-knowledge of my own tendency towards regrets and second guessing myself, my risk tolerance, etc. So much about your situation will differ. It's possible that the people who know you best might be able to give meaningful input on the questions that go to your temperament and risk tolerance, but in the end it's a decision that you will need to make for yourself. And I would here emphasize again that the best way to make the best decision is with an open mind in collaboration with a doctor you trust - and possibly with supportive processing from a therapist or social worker.
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wow, you guys are amazing! Thanks for your thoughtful responses! I am overwhelmed…
Maybe a little more history. My mother had BC at 40 and died at 72 from multiple myeloma which was apparently likely triggered by the radiation that also destroyed her lungs. Hence my deep concerns. That woman absolutely rocked! Her treatment for cancer was horrid….
I do not take this diagnosis lightly. I will approach my treatments with knowledge and strength but until the final pathology is determined I am not sweating it. Radiation on my left (and very tiny) breast does worry me. I have COPD. I saw my mother suffer and I don't need extra lung damage. Yes, I know, things are different now but it's still there in the back of my brain….
I have been given an excellent surgeon and she will guide me through this. I also have a great primary care doctor. I am in good hands. If radiation is recommended I will do it, likely with a bit of attitude. I feel attitude is warranted. It's my life after all.
Lol, I just deleted the rant of a lifetime…felt good to write it down, felt better to delete it.
Can't wait for Friday! Time to deal with “lefty"!
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Hi Buzzbomb - If you do go forward with radiation, make sure you have the RO walk you through the planning document. In it, there will be measurements that the physicist and RO compile to estimate the doses delivered to where it will and (hopefully) won't target. Here's an small excerpt from the plan for my "lefty" with plenty of rads hitting the Planned Target Volume and just a smidge to the lungs and heart. If you're given partial breast irradiation, I assume the location of your excision will be part of the calculus.
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thank you mfk
I’m starting to get a wee bit nervous about my Friday appointment. I have seen everyone referring to the size of their lesion but none of my documents mention size….wait and see I guess.
I fully expect my diagnosis to change after the lumpectomy, I don’t know why, it’s just a feeling
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just back from the appointment with my surgeon…she is awesome. Surgery set for March 9, I chose lumpectomy for now. I asked about size of DCIS and she said it wasn’t on the report and therefore likely very small(<1cm). The was also no ER report so she’s asking about that too….
Now I wait…and wonder how my very small breast will handle having a “walnut” taken out of it.
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Glad you're feeling good about the appointment with your surgeon, Buzzbomb! Glad you're comfortable with the decision you all reached for your treatment as well. I just wanted to add I had an initially 3 cm area of Grade 3 DCIS with comedo necrosis. I could not have rads due to another medical issue so mastectomy was my only other choice. I also opted for a BMX b/c I was on the larger side and didn't want to be uncomfortable from a symmetry perspective. I chose not to go on an AI b/c my ER and PR were very low positive. I'm 1 1/2 years out and doing fine from a DCIS point of view. Best to you!
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Buzzbomb - good luck with your surgery. Happy to take any questions you have to the extent our procedures might be similar. I had a wire localization prior to going into the OR, and my DCIS was at about 6 o'clock.
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thanks livinlife, love to hear other people’s experiences. mfk….omg we are twinning! My DCIS is just grade two though, but everything else is similar. Small area of DCIS, left breast…I’m at three o’clock. I will have a wire put in just before surgery. My question to you is how noticeable is the difference between breast. I am very small and honestly think it will be very noticeable. The surgeon did say I would notice it when naked but it wouldn’t show in a bathing suit or with a bra. Right now I don’t think that will bother me but when I actually see it I might think differently
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Buzzbomb - I'm barely a C cup, and it's 100% not noticeable in a bra or bathing suit. The surgeon did a tissue mobilization to move some bits from the outside towards the middle to fill in the gap. So, for me, the part that's "missing" is more of the curve on the outside rather than at the surgical site itself. After the surgery, that "donor site" was quite bruised for a few days, whereas the surgical site itself looked like nothing had happened except of course for the scar. The nipple is probably a little lower than it used to be? I'm a little less than two weeks out from the end of radiation, but the partial breast treatment doesn't appear to have changed the appearance of the breast in any way.
The wire localization was a breeze - very light compression, not like the biopsy. The radiologist had to get down on the floor to approach my breast from below, which was rather amusing. Beats hanging me from the ceiling!
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mfk, thanks. My little cup is definitely going to look smaller…my doctor will also do the tissue mobilization and said the breast will look slightly smaller but lifted. I’m good with it.
I just just told some of my family, dang that was the hardest part of all this.
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just had my lumpectomy and it went very well. I was so cold coming out of surgery…had four heated blankets on me and one wrapped around my head…took me forever to feel warm.
Had beautiful views out of my windows at the hospital, astunning sunny day but cold….come on spring!
I feel so groggy right now and I just want to play with my new puppy, the sweetest little black lab. I love her.
See doc in three weeks for results. Appears most of the calcifications were removed during biopsy but they still removed a large walnut size out of my A cup….right now it looks normal but I know that’s swelling.
I am rambling with the anesthesia….back in three weeks with final results.
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Thanks for updating us and so soon after surgery, buzzbomb - whoa!!! Glad you're doing well in your early recovery and could appreciate your nice room view : ) Definitely check back in to let us know how you're doing and certainly once you hear back on path...
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I feel amazingly awesome. No pain meds now, stretching is a breeze, and the brain fog is gone! I feel I need a good workout but know i have to wait.
My nipple was very numb after surgery but it’s coming back! All in all it looks pretty good right now. I haven’t even had any bruising, I’m so happy.
Thanks for dropping by livinlif
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boy, this forum is so quiet….
Just returned from my appointment to find out the final pathology after lumpectomy. Margins were great but they found micro-invasion, darn it. My surgeon seemed a little stumped as to whether or not she should do the sentinel node biopsy so my case will go before the oncology board meeting and I'll find out end of next week…just before my 65th birthday. She does not want to do any unnecessary surgery. She still hadn't received the estrogen and progesterone info either….
So it's more wait and see.
another thing, two Sundays ago I broke my elbow (nasty fall in the garage, direct elbow to concrete…ouch). It's healing well withoutsurgery and I'm happy. I honestly just want to go back to the gym, lift some heavy weight, and do some yoga. Until then it's floor exercises and walking.
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Just got a call from the surgeon and after consulting with a panel of oncologists they have recommended a sentinel node biopsy. My choice, but I said yes. Seems silly to go this far and say no to something that could be life changing. Hopefully they can get me in soon. Should know in 24 hours…
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surgery set for April 20 for node biopsy. Would have preferred an earlier date but in theworld today I’m happy with a three week wait.
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just had my lumpectomy and sentinel node biopsy on 3/31. I’d say the SNB site is 80% as noticeable/mildly painful as my lumpectomy site. As well as you did with your first procedure, I expect you will do well with this one too. Hugs
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thanks sarahmaude. Appreciate your post! My surgeon said the node surgery would be more uncomfortable and I’m not looking forward to that. I’m looking forward to this being over. Hope your recovery goes well
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buzzbomb-
I just wanted to pop in as i have been looking at new topics today. My path is different than yours right now, but i had the 3 lobes removed with my mastectomy and the under-arm pain was not something i heard them say anything about. arm pit to elbow underside. Not all the time, but when i lifted my arm for a good month My inflater in my breas was numb!! Nerves are gone. If you are having one out, maybe little pain.
The results of those test will be great to know!!! That took about a week for me.
A day at a time.
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Katg, thanks for popping by! I think my doctor was comparing my lumpectomy to the sentinel lobe biopsy….she knows 8 healed very quickly and easily after lumpectomy and suspects I might find the lobe biopsy a little harder than that. I am personally not anticipating any problems. Fingers crossed and do know I appreciate your input! I love hearing other peoples stories.
I wish you well in your healing
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