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IDC Stage 1, Grade ... ER+PR+HER2-

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Bluebird_18
Bluebird_18 Member Posts: 7

Hello all...I'm one of the lucky ones. I found my tiny tumor January 18 (it was 5mm), had a lumpectomy February 18 and had to go back to the OR March 5 for a wider margin. I'm faced with taking an aromatase inhibitor and/or radiation. I realize that this tumor is very small and was not terribly aggressive, for which I am grateful. My dilemma is that my surgeon and the radiation oncologist, as well as the medical oncologist are not really giving me definitive answers. I'm wondering if any of you have the same tumor characteristics and what you've done or not done for treatment. I'm terrified of the side effects of the AI and the fact that I have breast implants which will most likely end up with capsular contracture from the radiation. I'm more terrified that if I do nothing I will end up with some other cancer down the road.

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  • Runrcrb
    Runrcrb Member Posts: 202
    edited March 2018
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    bluebird 18,

    Congratulations on finding it early. I saw on your other post that you are post-menopausal so I’m guessing you’re in your 50s or 60s. The decision for further treatment is a big one, especially if your doctors aren’t recommending a definitive path. Have you considered a second or third opinion? Probably well worth it in your situation.

    I had radiation and I’m on an AI. Radiation was not easy and you may well experience issues due to your existing implants. Might want to discuss it with a plastic surgeon too.

    AI side effects vary widely from user to user. My first one was hard but I switched and the next one was much better. How’s your health outside of breast cancer? I believe the healthier you are - diet, exercise, weight - the easier it is to manage or escape side effects.

    Good luck


  • Georgia1
    Georgia1 Member Posts: 188
    edited March 2018
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    Hi Bluebird. I don't have implants, but have similar stats. I was able to work with my radiation oncologist to do three weeks of radiation rather than six, which reduces side effects considerably. So ask your RO about that and if useful, like Runrcrb said, you can get a second opinion from someone you might connect with and trust a bit more. If you're post-menopausal, the side effects of an AI or Tamoxifen might not be too bad; they haven't been for me so far. And of course you can always stop taking them so no reason, IMHO, not to try 'em.


  • Bluebird_18
    Bluebird_18 Member Posts: 7
    edited April 2018
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    Hello,

    Thanks to all so much for your responses...I'm sorry it has taken me a bit to get back to you. I think my wheels may have started to come off...when I first got the diagnosis, I was so gung-ho and positive and now I'm feeling overwhelmed and MAD. I had to go to the OR twice and I've developed axillary webbing (cords) that go from my left wrist to my left hip. My PT has never seen such bad ones and it's her specialty! It limits my range of motion, especially for yoga, but DAMMIT! I'm pushing through it. I've also an area of fat necrosis which in addition to my scar is just the icing on the cake. Yes, I'm post-menopausal at 58 years old (I feel so cranky!!!) I eat really well and exercise. I have NO other health issues, never have. I had been on Estrogen and Progesterone for about 10 years for menopausal symptoms at age 49 and am now obviously off of it. That has PLUNGED me into menopause, which I was okay with until the interrupted sleep started. Oh and those lovely drenching night sweats are so wonderful. I'm sorry to complain because I really do know how fortunate I am to have found the tumor so early. GEORGIA1...I love your tagline!!!! Runrcrb.....thank you for your honest comment about the radiation....if ONE more person tells me it's a piece of cake, I'll scream!

    I do have a second opinion in the works. It's an online thing, but I may go to Boston for a third. I have an appointment with the RO tomorrow to further discuss treatment.

    I don't like being part of this 'sorority', but I'm grateful for all of your experiences and your willingness to share it with a total stranger. I'm generally an outgoing, happy and grateful woman. I'm a nurse, I have great kids and my husband has been a loving, caring ROCK through this so I do have SO much to be grateful for and I'm feeling guilty for complaining. Does any of this sound familiar to any of you?


  • benaya
    benaya Member Posts: 36
    edited April 2018
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    Hi Bluebird 18: I have the same diagnosis but with "IDC, tubular" subtype (1 cm) which is a little less aggressive and has somewhat better prognosis than regular IDC. I just had a lumpectomy & have opted to forego radiation (some doctors recommended it and some not) and will probably forego meds as well (might try & stop if can't deal with side effects--not sure yet). I also chose not to have sentinel node biopsy. I've gotten several opinions and have done lots of research. For me, the probable side-effects of both radiation and meds is something I can't deal with on top of other stressors in my life. If it's a gamble, it's one I'm willing to take. I really stress getting several opinions. Had I gone with the first surgeon I had seen, I would have been overtreated. I think, in some cases, treatment isn't individualized to the extent it should be. It's just my take.

  • Bluebird_18
    Bluebird_18 Member Posts: 7
    edited April 2018
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    Good morning Benaya,

    Thank you for your response....I'm with you in thinking that treatment isn't really individualized. I keep hearing "standard of care" but in this case it makes no sense. Not all IDCs are the same, obviously. I'm awaiting 2 more opinions, which in and of itself is torture! I hope you've recovered well....this diagnosis certainly reminds me to take nothing for granted.


  • benaya
    benaya Member Posts: 36
    edited April 2018
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    Hi Bluebird 18: this has been quite an eye-opening journey for me!! I feel fortunate that I have the research skills and personality that leads me to question----and really fear for those who aren't as inclined- or lack the research ability--or wouldn't dare question their doctor, etc. I think that slowly, some doctors are beginning to shift in their approach based on new research, but not all seem to be up on the research. DCIS is an example, where in the past, surgery was routinely done but now some patients/doctors are opting to wait and watch, since it may not always be necessary. I think these forums are a great tool for the sharing of information and support!!

    I hear you about the torture in waiting!! I'm still awaiting my path results which are overdue.

  • bluepearl
    bluepearl Member Posts: 133
    edited April 2018
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    My first one was grade 1 and exactly 1cm and I got neither radiation nor chemo (mastectomy though). Try not to be terrified of the s.e. of the anti hormonal as there are so many you can try until you find the one that works best for you. Despite being in my 60's, I opted for tamoxifen as it gave me a better time of it that A.I. altho my sister did better on an A.I. You just never know. As long as that tiny tumour isn't hormone negative nor Her2+, you might be able to forgo the chemo.

  • ReadyAbout
    ReadyAbout Member Posts: 145
    edited April 2018
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    I was diagnosed with DCIS and decided not to do AI since it isn't super helpful for DCIS. Tumor was 1.1 cm and there was a second tiny tumor near that. Had lumpectomy on 2/23 and had planned on radiation, although I was nervous about it because I have a vascular condition that makes radiation an "iffy" prospect. Welp, so much for all that. My RO called me in today to tell me that the pathologists at the Oncotype lab have "rediagnosed" it to IDC and she did some research that suggests radiation could cause problems down the road, so now I'm staring down the barrel of a double mastectomy, AI, and possibly chemo. I actually stopped her as soon as she told me about the IDC and said, "You mean to tell me we could put a man on the moon 50 years ago but I've had 3 different diagnoses? How is that possible?"

  • cindyny
    cindyny Member Posts: 1,181
    edited April 2018
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    ReadyAbout- keep your sense of humor, it will help you in the long run! In the short run, do some research. IDC doesn't require mastectomy if you've had lumpectomy with clean margins. You also didn't mention your Onco score. I can't imagine 3 different DX in such a short time, but you will get through this. We've all found out along the way that we're stronger than we know.

  • Lula73
    Lula73 Member Posts: 705
    edited April 2018
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    ReadyAbout- this part of the journey is one of the most frustrating because there are so many unknowns and changes based on additional testing, surgery, scans, etc when all we want are firm answers and we want them now so we can get the show on the road. Just because you don't have rads does not mean you have to have chemo. Typically that's determined by stage, size, and type. I could not have rads for my IDC either and did BMX with immediate DIEP flap recon in Feb 2017. Went into surgery with breasts and came back out with breasts. I am actually thrilled with the results (other than no feeling in nipples). I looked good before surgery but I look fabulous now. So far the AI has had minimal side effects: hot flashes, a little trouble now & again staying focused and some joint pain in my left pointer finger and thumb. I can deal with that. I won't lie; it hasn't all been peaches and cream. But if i had to go through this ordeal I'm very happy with where I've ended up so far. Just wanted to let you know that while the whole diagnosis sucks and the tunnel appears long and dark, there is some light on the other end.

    On the man on the moon thing...you're so funny! You know there's a back lot on MGM or Paramount studios where that moon landing was filmed!😀


  • benaya
    benaya Member Posts: 36
    edited April 2018
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    In reading through these posts, it's pretty amazing how we all have similar diagnoses, with some variations/subtypes, with such radically different treatments!! From no radiation and meds to mastectomy. Makes one wonder.

  • Bluebird_18
    Bluebird_18 Member Posts: 7
    edited April 2018
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    Ugh....so unbelievable! I'm so confused by all of it. I still haven't had any treatment as I'm going for a third opinion next week. The waiting and wondering are just torture.

  • Bluebird_18
    Bluebird_18 Member Posts: 7
    edited April 2018
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    EXACTLY!!!!!!!


  • benaya
    benaya Member Posts: 36
    edited April 2018
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    Hi Bluebird: I know you want answers but don't think you have to rush & get some treatment. There's no indication you have a real aggressive tumor. Also, although my tubular subtype is less aggressive than regular IDC, I waited from diagnosis on 11/22 to lumpectomy on 4/3, and there had been absolutely NO growth. I think sometimes we get into a thing where we think we have to act faster than we do, so be cognizant of that. BTW, I got pathology back with clear margins--will be declining further treatment at this point in time (which does not). Hate to say this (cause I hate when people say it to me) but try to relax a little. You acted very fast and it's ok to take some time now in determining the appropriate treatment!!. It's an important decision & you have the time.

  • Bluebird_18
    Bluebird_18 Member Posts: 7
    edited April 2018
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    You are absolutely right! I tend to get into a crazy way of thinking and I was feeling like I needed to jump on this ASAP. Thank you for your words of wisdom… My husband and I are off for some sunshine and warmth away from the cold and the snow for a few days and will have a chance to think about it.

  • benaya
    benaya Member Posts: 36
    edited April 2018
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    Bluebird 18: Glad to hear you're taking some time off-----. Might be good to NOT think about it for a few days until you get additional information from doctors, etc. Bottom line, though, is that you don't have to rush into anything!! Enjoy!!

  • Nurselola1973
    Nurselola1973 Member Posts: 8
    edited April 2018
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    Hey!

    I have same diagnosis as you. I found out last Friday. I am leaning towards bilateral mastectomy and being done. I am 44 and don't wanna go thru this again.

  • Bluebird_18
    Bluebird_18 Member Posts: 7
    edited April 2018
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    Oh wow nurseola...that’s intense. I’m sorry you have to deal with this. I’m starting radiation next week and going to try the aromatase inhibitor and see how that goes. Chemo and further surgery for me isn’t necessary so I’m about little confused as to why it is for yo

  • meepersmonkey
    meepersmonkey Member Posts: 1
    edited April 2018
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    Hi Ladies,

    I don’t even know if I’m doing this right as I’ve just started looking into support. It hasn’t been a long story for me so far, but I don’t know where to start.

    I’m 39. I found a lump in right breast a few weeks ago and saw my OB on 13Apr18. Diagnostic mammogram and targeted US on 17Apr18. Radiologist indicated combined BiRads 5 (bonus lump found in left). Biopsies done 19Apr18. Prelim path on 20Apr18 indicated IDC in right. Full path on 23Apr18 stated Gr1 Bilateral IDC. ER+/PR+/HER2 neg.

    Due to me looking into fam history and discovering maternal grandfather having breast cancer 10 years ago and several extended aunts and female relatives also having BC, I was a candidate for genetic testing so I did that 26Apr18; pending results.

    I live in a small town and was given options by my gen surgeon, who also performed biopsies. I’ve just begun looking into second opinion on options and will be seeing a highly sought out onc surgeon on 08May18.

    I’m lucky. I keep telling myself this. Gr1 with no visible lymph involvement via imaging, great prognosis, etc. All good stuff so far. But I’m struggling. 39, 3 children, full- time demanding job. I don’t have time for cancer. I’m scared for my future, the future of my children, scared of the surgeries and procedures and the pain and the healing.

    Where do I go from here? How do I stop feeling so sad and angry? Does that just come with time?

    Sorry for the long post and the jumbled nonsense. Maybe I just need some positive words, love and light.

    Much peace to you all xo

  • Lula73
    Lula73 Member Posts: 705
    edited April 2018
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    Welcome to the club no one wants to join! We’re all here for you. From what you know so far, odds are your treatment options will likely be lumpectomies + radiation and anti-hormone therapy (a pill you take daily for 5-10 years that blocks your estrogen) or mastectomy with or without reconstruction and anti-hormone therapy. If no node involvement and HER2 status comes back negative you have a very good chance of skipping rads if you opt for mastectomy. And you have a very good chance of skipping chemo too with those stats plus a low oncotype score. With your family history I’m glad you’re getting the genetic testing. It may help you make the decision on which surgery to go with. Also know that there are immediate reconstruction options for mastectomy using either implants or natural tissue reconstruction if that’s the path you choose.

    The BCO threads and forums are a great source of information, advice from the patient perspective, and support. Feel free to share and ask questions!


  • GraceFrancis
    GraceFrancis Member Posts: 11
    edited May 2018
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    Hi, I had lumpetomy November 2017, with 4 lymph nodes removed which were negative. I was stage 1 in right breast only Shortly after 30 treatments of radiation, I needed a rest since I was having left retina surgery inMarch 2018, so i couldn't start Arimidex. Started it and day 14 legs and joints were horrible, iin which I couldn't move out of bed. Therefore, I stopped meds. Went back to oncologist after a 2 week break in which he stated me on Letrozole April 25, 2018. Again, blew up in weight with joint pains, swelling and tingling all over body especially legs. Stopped this medicine. Oncologist made me go to cardiologist who will see me in 2 weeks as a precaution. He believes its these horrible meds. I teach high school and am on my feet. I have been watching my foods, but cardiologist beleives medicine caused all these issues. I am frustrated and disgusted about "what the 3rd round of meds, will be. My husband doesn't get it, that I am at age 61 not walking around like I am 91 years old. Please keep in touch and maybe you have insight on should I continue with this hormone therapy? So mixed up\ ......GraceFrancis

  • Lula73
    Lula73 Member Posts: 705
    edited May 2018
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    hi GraceFrancis- so sorry you’re having these symptoms. What you’re experiencing is joint inflammation from lack of estrogen and/or the med, weight gain which can be caused by either the med and/or lack of estrogen, and something called paresthesia (tingling and/or numbness in your extremities).

    For some of us the joint pain/inflammation can be managed with supplements like curcumin. The affected joints for me while taking curcumin are stiff and painful when i get up in the morning but quickly loosen up and pain goes away within 5-10 minutes vs having it all day.

    The weight gain is what it is, unfortunately. Just being post menopausal puts us at risk for weight gain. You can talk with your doc about taking something like Wellbutrin or one of the weight management meds that are available by prescription. The weight management meds have come a looong way since the 80s.

    Letrozole and arimidex are 2 of the 3 aromatase inhibitors available in the US today. The other option is aromasin in the AI class, or tamoxifen in the SERM class. The AIs inhibit the aromasin that is necessary to convert androgens released from your adrenal glands to estrogen via body fat. The SERM class works by blocking the estrogen receptors in various places in your body so the estrogen can’t connect to the receptor and do it’s thing.

    Perhaps try some curcumin for the joints/inflammation and talk with your MO about trying the aromasin and perhaps Wellbutrin or one of the weight meds for the weight gain. If SEs are still unbearable on aromasin, perhaps try the tamoxifen. Good luck!🍀

  • GraceFrancis
    GraceFrancis Member Posts: 11
    edited May 2018
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    Hi Lula 73, Thank you so much for the knowledge. I have been taking cucumin and tumeric. I will discuss this Wednesday with the oncologist about trying aromasin and a weight loss med. If you saw my great eating, you would think "it's not me". Just got back from Health food store and bougth Collagen Beauty Greens( loaded with greens and probiotics and hyaluronic acide)_. In addition , i eat tons of mushrooms but bougth CHAGA which is the top mushroom for cellular immunity. The cashier, ironically is a breast cancer survivor. She went through hell with the meds. Ended up mastectomy.. Please keep in touch. Are you still on meds for 5-10 years.ThumbsUp


  • GraceFrancis
    GraceFrancis Member Posts: 11
    edited May 2018
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    Hi Lula 73, Thank you so much for the knowledge. I have been taking cucumin and tumeric. I will discuss this Wednesday with the oncologist about trying aromasin and a weight loss med. If you saw my great eating, you would think "it's not me". Just got back from Health food store and bougth Collagen Beauty Greens( loaded with greens and probiotics and hyaluronic acide)_. In addition , i eat tons of mushrooms but bougth CHAGA which is the top mushroom for cellular immunity. The cashier, ironically is a breast cancer survivor. She went through hell with the meds. Ended up mastectomy.. Please keep in touch. Are you still on meds for 5-10 years.ThumbsUp


  • Lula73
    Lula73 Member Posts: 705
    edited May 2018
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    GraceFrancis- yes I am still on them. I started with tamoxifen - I was allergic with a horrible itchy rash across my back, shoulders, neck and upper chest. It felt like a yeast infection does where you can’t get any relief and want to jump out of your skin. MO put me on antihistamine daily and it helped, however I developed pretty severe joint pain all over and horrible brain fog and the finally at 2.5 months in, blood clots in both lungs and 1 in my leg. Tamoxifen had to go. Had a hysterectomy with oophorectomy almost 6 months later when it was safe to be put under anesthesia again and started letrozole/femara in Jan this year. I’m only 44 with a 13 year old still at home and a 23 year old who with his wife made me a grandma twice now. I’ll do the full 10. If they’ll let me go longer I’ll do that too. Cancer in various forms has tried to get me 4 times in those 44 years and I really am determined to die of something else. I’ve got a lot of experiences with my DH, kids and grandkids left to do.😉

    How about you? How far into AI therapy are you?


  • GraceFrancis
    GraceFrancis Member Posts: 11
    edited May 2018
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    Hi again Lula: Only made it on Arimedex day 14 with the mess. Then Letrozole , day 20 hit me. I got a feeling at 61 yrs. old, the next step will be Tamoxifin. Got more healthy stuff from store yesterday. Keep in touch.

  • walkingmydestiny
    walkingmydestiny Member Posts: 24
    edited July 2020
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    I am new, tho reading posts on this site has helped me. As far as I know I am IDC tubular ER+ PR+ and HER2- tumor size 3mm on my biopsy report it says stage low so i figure since i have a tumor its small i am a stage 1. has not spread. anyhow i speak with surgeon in 2 days. I am sure I will need a Lumpectomy after reading posts here its gotten me rethinking any radiation or chemo. i am 63 years old.


  • walkingmydestiny
    walkingmydestiny Member Posts: 24
    edited February 2020
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    Hello, i am new to post and i read your post, just wondering how you are doing with out radiation or chemo?

  • walkingmydestiny
    walkingmydestiny Member Posts: 24
    edited July 2020
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    Hello Benaya,

    Just wondering how you are doing? Have you decided on any further treatment or are you still declining radiation and tamoxifen?


  • grainne
    grainne Member Posts: 119
    edited February 2020
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    Hello and welcome. If you have a tiny tubular cancer that has not spread to your lymph nodes your prognosis should be excellent. My tumour, also tubular was 1.3 cm with no spread to the lymph nodes. I had a lumpectomy which left very minimal scarring, whole breast radiation as I had 2 tiny satellite tumours and i am now on tamoxifen with almost no side effects. Like you, I am postmenopausal so I tried AIs first but found them intolerable.

    You are at the horrible post diagnosis stage when you are still reeling and don't even know what questions to ask, let alone what to make of the answer. I have no specialist knowledge whatsoever but i am happy to share my experience with you. There is a tubular cancer thread on the "Less Common Types of Cancer forum". It is quiet at the moment but you might find it helpful reading the posts. Please feel free to PM me if you like...I am happy to chat.