Just Diagnosed with IDC...

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dcblue
dcblue Member Posts: 4
edited July 2017 in Just Diagnosed

Greetings! I am 42, and just diagnosed with Invasive Ductal Carcinoma...there is a tremendous of info out but I think it is important to seek counsel from real women. Questions that I am not finding real answers too...is radiation really be necessary...how long can I wait to make a decision...anyone try any alternative treatments? I would appreciate input...thanks!

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  • Tpralph
    Tpralph Member Posts: 487
    edited July 2017

    If you could put in your stats in your profile and make it public the members here may be able to help. Most of your questions are best answered by your doctors.

    No radiation is not always necessary but depends on your diagnosis.

    The amount of time you have also depends on your diagnosis. What size is tumour, grade and hormone receptor status.

    There is also an alternative treatment forum on this site.

  • ready2bedone
    ready2bedone Member Posts: 95
    edited July 2017

    Greetings! Sorry about your diagnosis, but you've come to the right place! I was diagnosed in April and am already on the other side. :-)

    In answer to your question about radiation, your treatment will depend on the rest of your biopsy results (did they tell you if you are ER/PR positive or negative, HER2 positive or negative, and what grade you are?) If you haven't got one already, ask for a copy of your biopsy report. All of those things, the size of your tumor as well as whether or not you have node involvement will determine your treatment. And then what surgery you choose - lumpectomy vs. mastectomy, can also determine whether or not you might need radiation. Your doctors should discuss all your options with you. Make a list of questions to take with you to your appts and write down the answers as well as any more questions that come up because it is a LOT of information to absorb all at once. As far as how long you have to make a decision, that could depend on how aggressive your cancer is. If it is slow growing, you probably have some time to think things over and do some research.

    I am ER+/PR+/HER2- (which is the best combo to be, I think), my tumor was fairly small and even though I had 1 involved lymph node, it wasn't an auxiliary node so doesn't really count. I chose to have a BMX with reconstruction (my girls had long since seen better days and I actually wanted to get a new set of perky ones) so I didn't need radiation. My Oncotype DX score came back very low so no chemo for me either. As it is, I only need hormone therapy and the side effect from it so far have been incredibly mild. I was very lucky and I hope you will be too!

  • dcblue
    dcblue Member Posts: 4
    edited July 2017

    Thank you for sharing your thoughts! I have a sit down consultation with my Dr on Monday, and am creating my list...so your suggestions are most appreciative and I am grateful for your positive remarks and sharing your positive outcome...didn't realize how helpful this would be. I reached out per suggestion of my husband and was a bit reluctant to.

  • marijen
    marijen Member Posts: 3,731
    edited July 2017

    SPECIAL REPORT

    Are Small Breast Cancers Good because They Are Small or Small because They Are Good?

    Donald R. Lannin, M.D., and Shiyi Wang, M.D., Ph.D.

    N Engl J Med 2017; 376:2286-91June 8, 2017DOI: 10.1056/NEJMsr1613680

    Share:

    Data from the Surveillance, Epidemiology, and End Results registry show that smaller breast cancers, like many of those detected by mammography, are disproportionately biologically favorable in natural history.

    Disclosure forms provided by the authors are available with the full text of this article at NEJM.org.

    SOURCE INFORMATION

    From the Department of Surgery, Yale University School of Medicine (D.R.L.), Yale University School of Public Health (S.W.), and Yale Comprehensive Cancer Center (D.R.L., S.W.), New Haven, CT.

    Address reprint requests to Dr. Lannin at the Department of Surgery, Yale University School of Medicine, P.O. Box 208062, New Haven, CT 06520, or at donald.lannin@yale.edu.

    Access this article: Subscribe to NEJM | Purchase this article

    MEDIA IN THIS ARTICLE

    FIGURE 1Biologic Characteristics According to Tumor Size.

    FIGURE 2Breast Cancer–Specific Survival among Women 40 Years of Age or Older, According to Tumor Size and Biologic Features.



    Primary Care

      Written by Tricia C Elliott MD, FAAFP

    As the molecular structure of breast tumors continues to become more evident, and with the significant increased use of mammography for breast cancer screening in women ≥40 years of age at average risk, the overdiagnosis and overtreatment of breast cancers appears to also be occurring. Previous studies estimate the overall rate of overdiagnosis for invasive tumors is 22%.

    Lannin and Wang determined the impact of biologic factors such as grade and hormone receptor status, along with evaluating mean lead times in three prognostic groups for best and worst survivals: biologically favorable, biologically unfavorable, and intermediate.

    Prognostic Group (based on biological factors)

    Favorable

    Intermediate

    Unfavorable

    Grade 1

    ER+/PR+

    ER+/PR-

    ER-/PR+

    ER-/PR-

    Grade 2

    ER+/PR+

    ER+/PR-

    ER-/PR+

    ER-/PR-

    Grade 3

    ER+/PR+

    ER-/PR-

    ER+/PR-

    ER-/PR+

    ER=Estrogen receptor status

    PR=Progesterone receptor status

    They focused primarily on the characteristics of favorable and unfavorable tumors, and correlation with the size of the tumor. In women ≥40 years of age with small tumors (under 1 cm), many of these were favorable tumors. The larger the tumor, the greater chance it is unfavorable. Findings show that tumor size also depends on the biologic factors of the tumor, not solely on when the cancer was detected. Many small tumors with favorable biologic features do not progress to large tumors within a patient's lifetime. Large tumors may preferentially develop from small tumors with unfavorable biologic factors. Tumor size and biologic factors influence prognosis.

    Mammography has been very good for detecting tumors; however, with the overuse of mammography, we are detecting many tumors with favorable biologic features and may be overdiagnosing and overtreating certain cancers that may benefit solely from excision (without chemotherapy) or watchful waiting. Also, as age increases over 40 years of age into age 70 and 80, the overdiagnosis of favorable, small tumors increases significantly. Overdiagnosis can cause unnecessary anxiety and fear in patients.

    As primary care clinicians counseling our patients on breast cancer screening and detection, multiple factors can contribute to a shared decision between clinician and patient. When a tumor is detected, tumor size and biologic features may be factors in the decision-making process. Stage, size, age, and biologic factors matter and may help avoid overdiagnosis and overtreatment in patients. Many small breast cancers may be good because they meet the favorable biologic profile, and they may be small because they are favorable. More studies are needed to help develop future guidelines for clinicians and patients.

  • marijen
    marijen Member Posts: 3,731
    edited July 2017

    Readytobedone, a positive lymph node is a positive lymph node. I believe it does count. I could be wrong but I've been here a year and a half and have never seen that. Did your doctor say that

  • Gingernurse
    Gingernurse Member Posts: 27
    edited July 2017

    Thank you for your posting. I was diagnosed Monday IDC, >2cm ER+/PR+, I can't remember about the HER2, but I was told it's a good cancer to have (if that's at all possible). Meeting with the surgeon on Tuesday and I can't meet with the oncologist until 7/17. I am hoping no radiation. I am 44, husband left me in December, and I had an unplanned hysterectomy in March when I went in for a Davinci Procedure to apply a sling under my urethra d/t stress incontinence. I'd had two previous surgeries to remove endometrial scar tissue and the surgeon had to remove my uterus and fallopian tubes because of the three fibroids that made it the size of a large grapefruit. Here we go!

  • dcblue
    dcblue Member Posts: 4
    edited July 2017

    Thank you for posting, I too had endo and had a partial hysterectomy 7 years ago...my surgery for lumpectomy is scheduled...I am not convinced about having radiation or using Tamoxifen...

  • dcblue
    dcblue Member Posts: 4
    edited July 2017

    Anyone choose to not have radiation or tamoxifen even though it is a suggested treatment after a lumpectomy?

  • Matryoshka
    Matryoshka Member Posts: 35
    edited July 2017

    Hi dcblue & Donagingernurse, sorry to see you are here, but please feel assured that you are in the right place. I was diagnosed about 3 months ago or so, now. It feels like a lifetime away. My so-called old life. I am considered a young breast cancer patient (34 years old), and this was definitely not something I expect to have to deal with at this point. Although a lot of aspects of my life, I still managed to keep as regular as possible, which I am very grateful for. And this forum has been such a wonderful source of information and support.

    I just started my first chemo session yesterday, a little too long between my diagnosis, first surgery, for my comfort. But things happen.

    I think the most important for you now is to evaluate if you truly trust your medical team. The Oncologists, the nurses, anyone who you have to trust to give you the best possible advise and care. Each and everyone of them will be with you for the treatments in time to come. Don't be hesitant to seek a second opinion if you can. My surgical oncologist was so adamant from the beginning that she has to remove my nipple, and I was really upset about it. After seeking a second opinion, and also talking to her a lot more, I decided to put my trust in her. And now, my surgery wounds are healing nicely. Honestly thankful for her.

    Would you like to share what is your reservations about radiation and tamoxifen? I am not quite at the radiation and hormonal therapy stage of my treatment. Although my hormonal therapy involves ovary suppression and aromatase inhibitors after the chemo and radiation, instead of just tamoxifen as my medical oncologist felt that it would be a better course for me. She even started the ovary suppression for me earlier as I had to do chemo, and this would help in fertility preservation.

    Sorry for going a mile a minute. I know this is a difficult time for you, and all the information coming your way will be so overwhelming. We are all here for you! Sending out my best thoughts to you!

  • Gingernurse
    Gingernurse Member Posts: 27
    edited July 2017

    Hi Matryoska,


    I was very terrified of RADS because I am a redhead with very fair skin and of course I googled and saw horrible burns and leathery skin. I fear having a mastectomy with reconstruction because I've seen horrifying before and after photos. I've always been self conscious of my body and anorexic and bulimic for most of my life. I understand my breasts don't define me, it just upsets me, grosses me out, and pisses me off. Ultimately, I'd rather be alive!!!!! A co-worker of mine reassured me she had radiation and her only side effect was being tired. I know all cancers, treatments, reactions, and side effects are different. My husband has actually been incredibly supportive of me and admits he's scared too. Even though we are not together living as husband and wife, its comforting.


    I do not yet know what my options are. I meet with the surgeon tomorrow and surprisingly, I was called by the oncologist's office and met him today. The co-worker also recommended him. I felt very comfortable with him, Not only did he explain my HER2+ meanings (not good /quite aggressive) but he ordered labs, genetic testing due to family history. He explained that they are not there just to treat me and give me medicines, they are here to help me through the experience. That was quite reassuring. He explained that my tumor is 2.2cm and 2.5cm is the cut off for certain types of treatments. He did tell me I will be most likely taking Herceptin . I'm glad he seem eager to 'get the ball rolling' even though he didn't really have much to work with.


    As of now I meet the surgeon tomorrow, BRCA 1&2 blood draws after, a head CT on Thursday due to my headaches which are new, and an MRI on the 19th. I meet with him again on the 20th to go over a plan of action. I am not alone in this. thank you all for your posts.
  • Suzanne50
    Suzanne50 Member Posts: 280
    edited July 2017

    I went for a 2nd opinion when it came to radiation. My MO didn't think it was necessary and my BS thought it was absolutely necessary. In the end I had it. I didn't want to take any chances with recurrence. I don't have any regrets. I am on tamoxifen now and have minimal side effects. I would recommend you talk all your doctors and then get 2nd opinions if you have doubts.

  • Lula73
    Lula73 Member Posts: 1,824
    edited July 2017

    Donagingernurse- totally get where you're coming from with the fair skin and rads. Rads are pretty standard if you opt for only lumpectomy-you can never be sure you got it all even with clean margins. Being a nurse I know youve seen plenty of bad MX outcomes with and without recon. I will say however that MX and recon has come a long way in a short amount of time. If I entered your ER I'd bet you'd look at my chest and say 'it looks like she may have a very faint scar descending from her nipple-she maybe had breast augmentation. But they don't look like there's an implant in there..." I had BMX with immediate natural tissue recon using the DIEP flap procedure in Feb. the end result is breasts that look like the ones you went into surgery with (unless you want them to be different), they are soft and warm, and they move with you and age with you just like the originals. Just like any other surgery, you have some good outcomes and you have some not so good outcomes. Immediate recon helps increase the odds of a good outcome versus delayed Recon. Having a surgeon who does this type of recon at minimum one time a week with a lower than average failure rate also helps the odds. I guess at the end of the day all I'm saying is don't rule out MX with recon so soon in the game if you truly don't wish to have rads and your MO agrees that BMX would mean you could avoid rads. To learn more about this option from the top center that does this type of recon (the center for restorative breast surgery in New Orleans, aka NOLA -women travel from all over the world to have their recon done here for a reason including me) check out their website:

    www.breastcenter.com

  • etnasgrl
    etnasgrl Member Posts: 650
    edited July 2017

    Donagingernurse....I am also very fair and burn incredibly easy in the sun. (Once got second degree burns from a day at the beach. And yes, I applied sunscreen multiple times!)
    I was also very worried about radiation, given how fair I am. My radiation oncologist explained to me that skin color and tone has absolutely NOTHING to do with getting burned during radiation treatments. Radiation burns from the inside out. The sun burns from the outside in.
    Turns out, my skin held up very well! I did not experience any burning or blistering. My skin was hot to the touch and pink, but I had no pain or discomfort.

  • Tappermom383
    Tappermom383 Member Posts: 643
    edited July 2017

    I had the same experience, etnasgirl. I'm fairer than fair - if I even think about going outside, I start to look like a lobster. As a child, I was the little girl on the beach wearing a T-shirt over her bathing suit.

    I, like Donagingernurse, was worried about my skin's reaction to my 33 radiation treatments (which I finished last Friday). I got a little red but nothing terrible, certainly not painful. No blistering, no peeling. I did get a bit of a rash but it's already going away.

    MJ

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2017

    In fact I read somewhere that fair skinned people have less problem with radiation burns. Sorry I don'[t remember where or have the citation. It held true for me. Fair skin, light hair, no real burning.

  • NewJourney
    NewJourney Member Posts: 4
    edited July 2017

    Ready2bedone,

    Did you have a palpable mass or was your BC first detected on a screening mammogram?

    Thank you for your help!

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2017

    I don't know if this is related to the original rads question, but my "local recurrence" two years after BMX and reconstruction was a lump I discovered under my collar bone.

  • Gingernurse
    Gingernurse Member Posts: 27
    edited July 2017

    Thank you so much. I definitely will consider that.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited July 2017

    I don't believe there's any such thing as a "good cancer" to have. I know there are easier ones to treat and those that are less aggressive, but BC is sneaky. And I'm sure there are those who are over-treated. I found the hardest thing to be actually being in charge of these decisions! I didn't want to do more than was needed and perhaps end up with some sort of lifetime problem ... and yet I sure didn't want to kick myself for not having done what was recommended if it came back.

    Radiation is always recommended with lumpectomy and sometimes still needed with mastectomy.

    As far as how long is safe to wait - yes, it depends on the cancer. But the vast majority of people have time to think about options, seek second opinions, and do any additional testing.


  • Gingernurse
    Gingernurse Member Posts: 27
    edited July 2017

    I have some questions if that's oaky; were you initially diagnosed with one type, it was treated and then another type came back? Did you have BRCA testing? I'm seeing that you had been diagnosed, but surgery was six months later. Is that normal? In this forum, I'm seeing many women's profiles showing a dx and surgery (often MX or BMX) within a month and a few being stage 1 &<1cm. Technically, I found out within a four day window from mammogram to dx.

    This is quite difficult to swallow at times, but for the most part, I'm trying to stay positive about this because it's treatable.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited July 2017

    I was treated with chemo first (Dec - Apr) because of being HER2 positive. It was only one tumor - 2.8 cm IDC with a bit of DCIS by biopsy. No cancer was left at the time of surgery.

    That's a big advantage for HER2 positive. Although it is aggressive (I'd had a normal mammo only 4 months before finding the lump myself) - the targeted therapies can work very well. My MO told me I had a 65% chance of having little to no cancer after TCHP chemo.

    I did have genetic testing - the "OvaNext" panel. It's like 20-some different mutations including BRCA. I was negative.

    I chose BMX for a lot of reasons that made sense for me, but it's a personal decision. They were still going to remove a pretty large chunk out of the top of my fairly small breast with a lumpectomy. And I would need rads for 21 treatments. But mostly - they were watching some things in the other breast. Some of those disappeared during chemo and one didn't. And no one could tell me (of course) whether the ones that were gone were killed with chemo or just hormonal changes. I didn't want to do any more 6 month follow ups.


  • Gingernurse
    Gingernurse Member Posts: 27
    edited July 2017

    Thank you for the feedback. I see my oncologist tomorrow, and we'll go over a course of treatment which may be TCHP(as he previously mentioned). I haven't yet received the genetic testing but I will. It seems chemo is 12 weeks / 6 series of the TCHP chemo or longer. They are seeing many scattered cysts in my left breast, but nothing concerning at this point although they are dense. I also still have ovaries and I'm not sure if I should have them removed as well. I'm just trying to educate myself as best possible, and being a nurse, well.... can make it worse.

    I will take it day by day, eat right, exercise, and be honest with my MO, and others on my team. I am concerned I will be too weak or sick to work so I took some tips from the top 20 things to help with side effects. In additional to that, I don't have any family in state and my husband left me, and I'm behind in the mortgage.... which I only have 13 years left on.

    Are you happy with your reconstruction? I have fairly large breasts 40C. In a perfect world I'm hoping that the tumor is so small and can be removed (its at 6:00). And if all goes well just have reconstructive surgery after I'm healed and hopefully free of CA. BUT BOY DO I KNOW it doesn't work out the way we want. I have a co-worker who had a case similarly to mine, 17 years ago she had it in the same place, went through chemo, lumpectomy, rads and tamoxifen for 5 years and its been fine. I am going to see her oncologist and he made me feel very comfortable explaining that I am not just a case, they are there to help me in every way through this entire process.

    I stop before a panic attack is about to fully encompass me and STOP!! Just take it day by day. It's scary at times so I say many positive mantras and pet and cuddle with my fur babies- that helps a great deal.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited July 2017

    I'm a nurse, too. Sucks, right? Although I'd had minimal experience with oncology up to this point.

    As far as working - it's really very individual. Some people do very well with minimal SE's. And it depends on your job. I did not work during chemo, partly because I was visiting patients in their homes and on the road a lot. I didn't have any coworkers to help me.

    The worst days for me with TCHP were days 3 & 4. That seems to be a common refrain around here. If I'd had a desk job or "work from home" type or even a nearby bathroom and opportunity for breaks, I might have been able to work. But not those worst days.

    I'm as happy as I can be with the reconstruction. I'm still only a couple months out and things are still changing. I miss my own breasts. As everyone will tell you - mastectomy with recon is nothing like a boob job. I have to remind myself that this was my choice to have better peace of mind, avoid radiation, and gain symmetry.

    It's hard to avoid that panic at times. I've found that it's good to allow myself to feel it for a while and then put it in a box and move on. I still have moments but no where near what it was in the beginning.


  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited July 2017

    dcblue as a triple positive, you oncologist will most likely suggest chemo. Come and join us on the triple positive thread...

  • Gingernurse
    Gingernurse Member Posts: 27
    edited July 2017

    I work 11-7 at a small facility so I'm hoping to have minimal SE. I start next Thursday so days 3&4 will be on the weekends(I don't work). Its getting scary now. So, Just praying a whole lot to the universe because I was 4 different organized religions by the time I was 12....Very confusing. Thanks again!. Any tips for things I may want to bring my first infusion? I'm bringin earplus so I can sleep as they told me it will be more than six hours. My doctor also said he will monitor me closely for nausea since that seems to be the #! side effect.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited July 2017

    Yeah - it starts to get "really real" at this point.

    There are lots of lists on this site for what to bring. Most important for me was a soft sweater or shawl - they have warm blankets where I go but it's always cold. I took a book and my Kindle so I could pass the time reading or playing games. Also took the laptop a few times thinking I'd watch something but never really did.

    They had snacks and drinks and even provided a bag lunch, but you should bring anything particular that you might want to eat or drink. My husband would go out and get subs for us. They just didn't want any hot foods there.

    The time goes by pretty quickly. I've rarely been able to sleep with so many people coming and going. Each time they hang another med they have to check your name and DOB. And the volunteers would be checking in with me.

    Just be sure to take your meds as ordered. I was on steroids (day before, day of, day after) to minimize SE's. I also started Compazine for nausea the following day and continued that just twice a day for a few days "just in case" - never had a bad problem.

    Probably the worst SE that can be helped is the constipation and then the diarrhea. I also developed severe gastritis. Hopefully your MO's office has given you a list of what you can take and when to call.

    When you're in the midst of it - it can seem like forever. It really will go by fairly quickly. And don't worry about the faith. Some find theirs and some lose theirs and some just have a big question mark. It's all okay!


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