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Help with Abbreviations

Topic: In need of advice & help

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Nov 23, 2017 02:52AM

Girl9 wrote:

hello my name is natty my mother in law has ibc she got diagnosed about 5 weeks ago, I need some help in finding out about all the test and how long it takes and why treatment is not started.

Today they told her it has spread into the lymph nodes and they have to send a camera down her throat and that the doctor will call to schedule a appointment. she looks well has some pain I'am writing here today to find out if it does take this long to run all the test and how to help her and which hospitals are good. We live in Montreal and I'am constantly arguing with my husband because I think the hospital that she is going to is not doing it fast enough.

Thank you

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Nov 23, 2017 04:10AM Moderators wrote:

HI Natty09,

We are sorry to hear about your mother-in-law's breast cancer. We are glad that you reached out here. Here is a link to our main site's information on Treatments for Inflammatory Breast Cancer. You also may want to review this forum for those Living in Canada and managing a breast cancer diagnosis. Keep us posted on what you learn. The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Nov 23, 2017 04:11AM Georgia1 wrote:

Hello and I'm sorry you are dealing with this. I don't know about "sending a camera down her throat." That seems odd to me but maybe others can chime in with help there. If she has had a biopsy, can you ask the doctor to send it to you? A lot of your questions should be answered by the information contained there, like what kind of cancer cells, size of the tumor and staging. But I can certainly tell you everything feels like it takes forever, because it does! I was diagnosed 9/3 and didn't have surgery until 10/10. So the waiting and getting tested is sadly just part of the deal.

There is background information on this website and others (Susan J Komen site for example) once you have more information.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/26/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 23, 2017 04:20AM Girl9 wrote:

Thank you so much Georgia1 for the fast respond, truly appreciate you taking your time to write back to me. wow it took them a long time for you too!! How are you doing today, where you diagnosed with ibc as well? She did have a biopsy and they did the whole body scan with the bone test and abdominal and etc. Now they want to send a camera down her throat to see if I think is in the lungs or near the heart. I cant get too involved because she dosen't want too many people around and is saying that the hospital she is going to she is comfortable there. Thank you again for writing to me it means alot!

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Nov 23, 2017 04:33AM Georgia1 wrote:

Ah, I got it now. That sounds tough and you are super to help her. I am relatively lucky, which is always an odd thing to say about breast cancer! Had a lumpectomy, surgery went well, no spread. I start three weeks of radiation on Monday, then will be taking a hormone pill for five to ten years.

Sounds like your MIL is getting a lot of tests pre-surgery, which personally I think is good. Better to know what they're dealing with before they start treatment. Feel free to keep checking in with us and the moderators are awesome at offering resources.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/26/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 23, 2017 12:13PM bride wrote:

Hi and welcome,

Has your mother had a port put in yet? With IBC it much more common to start with chemo and then do surgery and radiation. But if the docs are worried about mets in lungs that may change everything in that shrinking a tumor in the lung may more important than anything else. Your mom definitely needs a medical oncologist to oversee her treatment plan and you should be aware of it cause treatment often interferes with our ability to kept track of everything and having someone — you in this case — helping to keep track of this complex process is useful.

Keep in touch.

bride

Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born. ~Anais Nin Dx 12/2/2013, IBC, Stage IIIB, 0/12 nodes, ER+/PR+, HER2+ Hormonal Therapy 11/18/2014 Arimidex (anastrozole)
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Dec 16, 2017 06:18AM Girl9 wrote:

Thank you for writing to me and the tips and advice. She actually had the port put in on Wednesday on her chest and this morning went in for chemo however they sent her home due to fever! I was at her place last night to see her and I was feeling a little sore throaty however i wore a mask and did not get to close to her. Anyway my sister in law is moving in with her all of a sudden she is a savior which makes me happy that someone will be with her all the time. But its been over 2 months still no answer about if it has spread what stage and exactly whats going on. Unless they know and dont want to tell there son and me. I tryed to tell them to go to the hospital that actually is the best for this and they even rubbed in my face last night "thank GOd we did not take any advice and go to any other place this hospital is so close who was gonna drive there every other day!" Anyway I shouldn't be getting upset its not about me! thanks again for all the advice and words. sorry I'm kind of venting on you!

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Feb 10, 2018 06:17AM Girl9 wrote:

Hi everyone its been awhile since I've written....so my mother in law did chemo for about 3 months every friday, today she went in and they want to do chemo every 3 weeks. Her breast to me looks alot smaller than what it was however if you talk to my sister in law she is negative and says that its just has spread to the lymph nodes under her arm. Obviously she knows better because she goes to the appointments with her. Her breast smells bad has some discharge coming out of the side and is discolored now. I haven't seen it but my husband told me. I don't get to involved because whenever I do no one listens to me. I still think we should of got a second opinion and took her to a better hospital but she is happy where she is and at the end thats what matters. My question is does anyone know for IBC is it normal for the breast to turn color, smell and is it normal that her chemo is being changed to every 3 weeks. Thank you

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Feb 11, 2018 08:14AM edwards750 wrote:

Sorry about your MIL. From what I understand IBC does change colors. Mostly red. Idk about the odor. Must be the discharge.

If she is happy where she is she needs to continue treatment there. A good relationship with her doctors is very important.

Diane

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Feb 13, 2018 11:20AM bluepearl wrote:

With a discharge that smells, there is infection. Must be attended to. Glad she has you as her guide.


Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/12/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/10/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/18/2013
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Feb 18, 2018 04:42AM bride wrote:

I second bluepearl, chemo doesn’t stop infections and actually lowers your immune system so please have her medical oncologist refer her to an infectious disease doctor. One of my dearest friends just retired from UCSF where she outdid everyone I know and became a superstar. If you want to pm me with your location, I can probably get her to tell who is the best local ID doctor.

I wouldn’t worry about your ML’s lymph nodes, lymph node involvement is part of IBC in general.

brode

Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born. ~Anais Nin Dx 12/2/2013, IBC, Stage IIIB, 0/12 nodes, ER+/PR+, HER2+ Hormonal Therapy 11/18/2014 Arimidex (anastrozole)
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Feb 21, 2018 05:04AM LoriCA wrote:

I'm so sorry about your mother in law Girl9. IBC is scary because it is so aggressive. As for the color change, not only did my breast turn bright red (and was hot to the touch) I had what appeared to be large purple-colored bruise on my entire right torso, collar bone to waist. The tumor completely destroyed my right breast within weeks, I am now flat-chested on that side with a nipple! It was terrify to see the cancer destroy my breast right in front of my eyes, while I was in the hospital. (It also spread to my chest wall, brachial nerves, left breast,liver,bones...). If there is a foul smell, it sounds like the tumor may have ulcerated/fungated (does she have an open, oozing wound?). I had a wound care specialist for that. She may not want to share all of these details with everyone because honestly, it's humiliating and traumatic to go through it and not something we want to talk about. It was so hideous that I refused to even let my husband see it. It was all I could do to face myself in the mirror while cleaning and dressing my wound every day.

My oncologist put me immediately on weekly Taxol and it saved my life. Not only did it stop the out-of-control growth of the cancer, I had visible healing after my first infusion. I finished up 12 rounds of weekly Taxol and after a good scan was put on Taxol/Herceptin/Perjeta every 3 weeks.

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)
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Feb 22, 2018 05:43AM Girl9 wrote:

Hi everyone, so my mother in law started every 3 week chemo stronger...she did not feel well that whole week after treatment. Intense diarrhea, not able to move one leg actually not able to stand or walk on left leg. She went to hospital due to this because she could not even go to washroom on her own. She has no pain in leg just not able to move it. They did a mri in her head and they see something in her brain, might be cancer.... I'am so confused, I'll tell you guys why!! When we speak to my sister in law she tells us that its spread everywhere and she won't be able to leave hospital. My sil has been saying negative stuff from day 1. Then today we spoke to her oncologist he said its in the breast she has IBC and a fine hair line might be in the brain and thats the reason why the leg is not moving (maybe). He will know by the end of the day. So the doctor said that the cancer is in her breast and hasent spread but now we have the brain issue. It just does not seem to end. Anyone can share something....much appreciated xo

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Feb 22, 2018 12:47PM meganin wrote:

Hi Girl9,

Sorry about the situation of your mother in law. IBC is known to be very aggressive and metastatic, and a type of breast cancer that is not well understood. I studied IBC for a few years as a research fellow, and I know that the treatment normally recommended is multimodality, which should include surgery, radiation, and chemo. There are several experts who have studied and treated IBC for many years at MD Anderson cancer center in Texas. One of them is Dr. Wendy Woodward. I think you can get more helpful information by visiting the MD Anderson cancer center website. I wish your mother in low a good prognosis.

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Feb 25, 2018 04:16AM Girl9 wrote:

Thank you all for all the advice and kind words. So we finally found out that it is mestastic breast cancer....it has spread to her brain now. Everything is happening so quickly that I don't understand the type of monster it is. I'm wondering now shouldn't they be doing treatment ASAP, or more chemo or something. She's only had like 6 chemo treatments so far and thats it!!! I'm not a doctor but getting so frustrated that if they know all of this why is no treatment being done yet. I'm almost angry and really don't know how to react with my husband...I know I have to support him and be there. I'm trying my best!!


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