IDC left breast - Newly diagnosed November 5, 2019

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Iseult24
Iseult24 Member Posts: 6
edited February 2020 in IDC (Invasive Ductal Carcinoma)

Found a lump in my left breast behind the nipple in September and my GYN sent me for my annual / diagnostic mammogram with ultrasound. Both ultrasound and mammogram were negative on 9-16-19. I was arguing with the ultrasound technician because the mass was so visible that I din't have to touch it to see it. Well the machine din't pick it up. I sent my GYN a message with the finding and she told me that we would "watch the lump for now". Because I had so much going on with my health this year I decided not to watch the breast issue.

- 10-16-2019 Breast specialist consult

- 11-5-2019- Excision of the mass

-11-24-2019--- I received a phone call from my breast surgeon that I have BREAST CANCER ( all I remember is that that it seems to be very early state)

My family went to meet with the doctor. She explained everything but I thought I understood but now that I am looking at the report, I don't really think I heard a word she said.

Diagnosis:

Left breast mass excisional biopsy:

Invasive Ductal Carcinoma, Grade 2 (out of 3)

Margins: The invasive carcinoma extends to the cauterized tissue margins

Tumor extend: 1.3 cm.

Invasive CA Micro:

Tumor focality: Single focus of invasive carcinoma

Ductal Carcinoma in SITU (DCIS) is present (extensive intraductal negative)

Nuclear grade: III (High)


PROGNOSIS/ PREDICTIVE MARKERS:

HER2 BREAST: Negative

IHC score 1+

RECEPTOR STATUS

Estrogen ---Positive

Progesterone--Positive

My doctor recommends Central lumpectomy nipple areolar (something like that) but I am freaking out because the mammogram and US failed me. I really wanted to remove the whole breast that is how scare I am. As soon as can meet with the plastic surgeon I need to schedule surgery

Mastectomy Vs lumpectomy

(I had an MRI of the breast Nov 15, that showed a tiny spot on the right breast. A biopsy was performed and was negative.)

I forgot to mention that I was very sick in February bad headache. No one couldn't figure out what was one. Until this doctor went out of her way and order all tests known to man. D-dimer was positive and the CTA of chest showed Pulmonary embolism. (in May all the blood clots disappeared from my lungs). When I came home from the hospital I was reading the report, I saw something about a cyst on the liver. The GI doctor did blood work and told me to loose weight (it's fat).

Now I think everything is connected.

I am going crazy here.

Am I wrong to consider mastectomy?

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Comments

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited December 2019

    It is natural to feel like everything is connected. Unfortunately, there is really no way of knowing without more tests. It is a cliche, but try to take one step at a time and try not to look ahead too far because things can change on a daily basis.

    Your story sounds like mine except that when I got the call from my PCP that the ultrasound was negative, I thought that meant it was a fibroadenoma and had the lump for 20 more months before being diagnosed. My PCP was clueless and didn't suggest further testing.

    I, too, have had a pulmonary embolism that started in my thigh. However, mine was after my second surgery for reconstruction. Do you have any risk factors for blood clots? Are you on a blood thinner now?

    My lump was also near the left nipple. I can't imagine having a lumpectomy there without disfigurement. Also, since your palpable lump did not show up on mammogram and ultrasound, why on earth would you want to risk something else not showing up? Of course, your decision should be based on what you are comfortable living with.

    As far as the liver goes, you might want to your ask your oncologist to order a scan to confirm the blood work. It sounds like you have “fatty liver" but that is something that you need to be sure about for peace of mind.

    So your next step is surgery. If you are not happy with a lumpectomy, let your surgeon know and get a second opinion if she is not willing to work with your wishes. Let us know how it goes and come back with any questions. Today is a little slow, but more people will respond.

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  • Maryjv
    Maryjv Member Posts: 306
    edited December 2019

    good afternoon...reaching out for support. I recently was diagnosed with idc r breast on 11/22, found a lump while in the shower mid October and the rest is history...right now I am waiting to see the oncologist to determine EVERYTHING, I went last week but pathology report was still pending. Until then I have gone for ct scans, bone scans and awaiting breast MRI. I also can’t help fear every ache and past s/s. Having some r shoulder pain (off and on) and feel like all my bones are popping, I am trying to stay positive and keep my faith strong but at times (especially when alone) I find my thoughts going sideways...keeping you all in my thoughts and prayers 🙏
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  • Iseult24
    Iseult24 Member Posts: 6
    edited December 2019

    No Peregrinelady, I was only on the blood thinner for 4 months and because this was my first time, the lung doctor took me off and is keeping an eye on me. Till now, they do not know where the clots originated. My legs were scanned... The lung doctor concluded maybe it was from me not moving after the hospitalization from the vertigo and migraine and vertigo in February. Still a guessing game. Plus I am obese and I work behind the desk most of the day. Now I have to remember to to move around several times a day. So sorry you had to go 20 months without being diagnosed. I am going to see the plastic surgeon but the truth is I don't really want reconstruction. my body is going through too much. I am 54... It's a lot to process.

    Thank you for responding and sharing your story.

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  • Iseult24
    Iseult24 Member Posts: 6
    edited December 2019

    Hi Maryjv, Thanks for your support. I sorry about your diagnosis. I am waiting to see the Oncologist and the plastic surgeon. I am exausted already. My children want me to go get a second opinion because they have been researching online and feel that because I've been sick for almost a year and basically "unexplained". They want me to get a second opinion. My doctor seems to think that the cancer didn't go anywhere based on the pathology report and the MRI. I will remember you all in my prayers!

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited December 2019
    Plenty of people have chosen no reconstruction and are happy with their decision. Good luck and keep us posted.
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  • Rah2464
    Rah2464 Member Posts: 1,647
    edited December 2019

    Iseult24 I sure am sorry you find yourself having to walk this path. I, too, had a tumor that was not detected easily. I think that happens a lot more than people realize. My cancer was not spotted until I had an MRI. One of the things that drove me to push for further evaluation was extreme fatigue so I deeply feel that the year prior to my diagnosis my body was battling heavily against the growth of the cancer. IMO when your immune system is working hard, you have much less strength to manage other things.

    Please take the time to get a second opinion if you are unsure of how you want to proceed. Remember if you do a lumpectomy you can always decide to go further. I didn't hesitate to do a double mastectomy. My mass went unseen for such a long time that I felt I didn't want to play that game anymore. Was it the easiest path? Probably not but I have no regrets. Everyone is so individual so make the decision that feels the best for you. I wish you well.

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  • KIDI919
    KIDI919 Member Posts: 425
    edited December 2019

    I was also dx with IDC( in Sept 2019) and had a left lumpectomy with sentinel node biopsy 11/22. Seeing surgeon tomorrow. I am hopeful of getting full pathology report then. What I do know is tumor ER+, less than a cm. Genetic testing was neg (16 tested), which I had to pay for myself as insurance wouldn't. I'm 64 with no family history of BC. It was found on my routine mammogram. I can't give advice to anyone regarding treatment/surgeries but am willing to listen to those in the same boat. God bless

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2019

    Dear KIDI919,

    Welcome to the BCO community. We are sorry for your diagnosis and at the same time we are glad that you reached out to our members. Please keep us posted as to what you learn tomorrow and how we can all best support you going forward. You are most welcome here and have come to a very caring community of others who can share their experiences and help you along the way.

    The Mods

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  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited December 2019

    As soon as I heard the word Cancer, I asked for double mastectomy. I was recommended lumpectomy with radiation but I prefered double mastectomy in order not to have radiation and also not to worry for every lump/sign on the breast. It isn't easy surgery but you forget about it and move on. I am glad I chose double mastectomy however, everybody is different.

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  • KIDI919
    KIDI919 Member Posts: 425
    edited December 2019

    I have IDC and DCIS. Seeing radiologist next week then oncologist after NY. (had my lumpectomy already) Had 180cc of fluid removed from my breast today that was taking up the space from the lump removed. Apparently I'm not supposed to be in pain, however I am. Heaven forbid anyone gets more than "take Motrin". I'm sorry if someone out there has a narcotic addict in the family (my nephew is one) but I could use a short term pain med here. The problem/result of that whole mess was doctors over filling meds. My husband doesn't understand why this should hurt 2 weeks in. Well perhaps someone should make a 4 1/2 incision in a testicle, let it swell to twice it's size, then stick a 20 gauge needle into. Just saying

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  • lumpynurse80
    lumpynurse80 Member Posts: 21
    edited December 2019

    I’m in the same boat. I’m 39 and I weighed the pros and cons of a lumpectomy and a mastectomy. I feel at my age the best course of action is to do a double mastectomy. I’m looking at long term for reoccurrence. I had only a 9.4% lifetime chance of breast cancer according to their cancer risk tools and yet here I am with intermediate infiltrating ductal carcinoma. I don’t think anyone can tell you what’s best for you. It’s your body and if you feel strongly that the mastectomy is the way to go then discuss it with your doctor. And trust your gut instinct to help guide you

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  • KIDI919
    KIDI919 Member Posts: 425
    edited December 2019

    I saw surgeon for post op check up on 12/3. I had a large amount of swelling and could hear/feel fluid swishing around. Surgeon ordered fluid drained the next day. 1 cup fluid removed. Felt a lot better (much less pain). I have not received an oncotype score -- nurse said it wasn't back yet (surgery done 11/22). That's what I want to find out about the most. 1st visit scheduled with radiologist for 12/13. Can anyone tell me what to expect with that visit? I'm guessing it's just a consult to make my treatment plan?

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  • Iseult24
    Iseult24 Member Posts: 6
    edited January 2020

    Update- It's been a very busy couple of months. I wanted to have a double mastectomy but 2 different doctors advised against it because of my health and my recent PE/blood clots. I had a Left mastectomy with TISSUE EXPANDER on 12-20-19. One week later while sleeping, I felt a POP in the expander and pain in the center of my chest. I called the PS office, the nurse said that it's maybe suture. I had numbness and tingling in my whole left side and when I put my foot on the floor, I don't feel it.. My primary started me on GAbapentin for nerve pain. Then a neurologist. Both think that it may be a pinched nerve......

    The expander and the drains hurt so bad to the point that I asked the surgeon to remove the expander. They told me that I am not supposed to feel anything because all the nerves are gone with the mastectomy. Yet I feel everything.,The doctor removed some fluid from the expander and I have some reliefs. Actually I feel a lot better. However, I was ok with NO reconstruction since the beginning. Then I found out that I could use my own fat to rebuild the breast and I agreed to the expander.

    I am scheduled to have the EXPANDER out on Friday. Today I went to went to get a second opinion with another plastic surgeon. He told me that It is too risky for me to have my breast rebuild with my own fat because of my size/Obese and my recent PE. Since I don't want Silicone nor Saline, there is no point in keeping the expander .......

    I am going to see a spine specialist because this surgeon seems to think that this numbness has nothing to do with my expander....

    Thank you for letting me vent.

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  • quinnie
    quinnie Member Posts: 221
    edited February 2020

    I can't believe I am back here again. In 2007 I was diagnosed with DCIS in the R breast. This website was my life saver. SO many wonderful people and insight and information. Had lumpectomy and radiation and no worries until last month when I was called back for further studies on the opposite breast. Diagnosed now with ICD. Will see the surgeon tomorrow.

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  • Iseult24
    Iseult24 Member Posts: 6
    edited February 2020

    I am so sorry about your Dx. Quinnie. It looks like many people diagnosed with cancer in one side end up getting it on the other side later. This is a great website and it also helps me a lot. And please think about getting a second opinion if possible.. I wish you the best tomorrow.

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  • KIDI919
    KIDI919 Member Posts: 425
    edited February 2020

    Quinnie, Very sorry to see the devil is back. It does seem that it turns up on the other side. Best wishes to you.


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  • quinnie
    quinnie Member Posts: 221
    edited February 2020

    thanks for your responses. Knowing someone is out there listening to my rants helps. Im anxious to see the surgeon tomorrow to figure out whats going on. Back in 2007 we had a chat room that was so helpful. With all the new technology I no one uses this now. It was so helpful. We all got on and talked for hours.


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  • Iseult24
    Iseult24 Member Posts: 6
    edited February 2020

    Maybe there is something similar to the chat room that we don't know about. It's easier to talk to you all then to talk to my husband about the cancer. He seems to think that I should move on already.,,, I just had mastectomy DEcember 20th and remove the tissue expander a month later. Needless to say I rather chat with people on this website who understand what I am going though.

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  • KIDI919
    KIDI919 Member Posts: 425
    edited February 2020

    Iseult24 ,Quinnie Please see steam room for anger. A safe place to vent.

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  • KIDI919
    KIDI919 Member Posts: 425
    edited February 2020

    I agree it's easier than talking to family etc


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