26 years old and just diagnosed with IDC
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I like all my doctors it’s just my nurse navigator that I don’t like. Do you normally have the same chemo nurse or different nurses every time
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I was in an infusion center with at least maybe 20 chairs and at least 10 nurses - so I had a different one each time. Once you pick the brains of the nurse navigator, you don't really need to call her again if you want to be proactive for yourself. Do make her give you a tour of the facility first.
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My navigator was pretty useful. I used her to get answers to questions when it was sometimes hard to reach my MO. I would ask for a different one because a good one remains valuable.
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It appears every place is different. You will have to ask them. But I get upset reading other peoples posts and realizing how bad my service was/is. I had a nurse navigator for 5 minutes, she gave me some pamphlets and a calendar and I never saw her again. My main contact with BS was a PA who was 2 months out of school. And I couldn't change any of them without changing dr. Wow, 20 chairs and 10 nurses, that's a lot. I'm in a group chemo room with about 15 chairs and 2 nurses, maybe 3, and I always get the same nurse who is frantic, frazzled and overworked and insulting. She said something like "you didn't have labor with those children did you?" Implying I was a wimp because I was informing her of my chemo side effects? She also told me to put my notebook down, stop writing and listen to her. I am so pissed and trying not to speak my mind. That can only lead to trouble as it did with the BS. And I don't have dedicated discussion time prior to treatment, it's on the fly in the group room. When I went to tour Sloan, they had private individual chemo rooms. My MO had a PA and nurse in the room, but the nurse was the contact, not the PA and spent a lot of time talking to me. It appear she was a combo chemo nurse/navigator, but you never know. I didn't go back. But I probably should have. I was also told once you pick a Dr. at Sloan, you can't switch. But on the bright side they give out lunch sometimes at my place, and the chemo room is social, so almost fun lol.
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Hello SantaBarbarian,
How are you doing now? I was recently diagnosed with triple positive IDC and am currently doing neoadjuvant chemotherapy with Herceptin and Perjeta
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I am doing well. I had a great response to chemo and my tumor died. I feel very well again now, and I am one year past surgery.
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43 years old and just diagnosed with IDC on January 9, 2020. I do not know much yet, but my nerves are getting the best of of me. I go on Thursday 1/16/2020 to find out more. I go through moments of sadness because of the unknown.
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jandrea:
Sorry to hear of your recent diagnosis. Please take a family member or someone to the appointment with you. It is a lot of information at first . Let us know how you're doing!
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Charity123 and jandrea0625 - Welcome to Breastcancer.org although we are sorry that you have to be here for this reason. We hope that you will stay active and make great connections in this wonderful Community, so we encourage you to come back often and ask questions. We know you'll find lots of answers here!
Warmly,
The Mods
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Thank you so much. My mother is going to go with me, I greatly appreciate all the help I can get.
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I’ve decided I’m back to my double mastectomy decision I have more tests scheduled for the 23rd for the clinical trial I’m doing them another day of testing. Then port placement then chemo starts feb
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did they give you a different navigator?
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It sounds like you have a solid plan in place. Having been through chemo twice, my sanity saver was my chemo board gals from here. Jump onto the chemo boards as Feb draws near, and if a February group has not started, then start one. I still am in touch with many (many) of my chemo gals, and we've since met up several times. They "get it" like no one else can!!!
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Might also help to read through a fall thread to see what other people are doing about side effects etc. Most of this info will come from your chemo nurse session but it's great to have supplies on hand that may be needed.
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Yes, I agree about support with current chemo group. There's nothing like contemporaneous support. And I also went back and read the month or quarter just before so I had some idea of what to expect and what to ask my doc.
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That’s a good idea about reading through previous chemo threads. I’ll do that. And I’ll watch for a February thread to be started. And no I haven’t asked for a new nurse navigator but my nurse navigator did basically tell me I wasn’t her problem anymore. She said from now on I’llneed to deal with my medical oncologist’s nurse. I like her. And I’ll have to send everything to the clinical trial lady. I like her as well. My nurse navigator said she won’t Be back in the picture Till it’s surgery time. Fine by me lo
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I saw a February thread started just yesterday.
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I got my genetic testing results back today. Everything came back negative! 🙌🏻
Getting my bone scan done today in about 30 minutes. Then tomorrow is a day full of scans
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Great your genetic tests are negative!!!!
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hray - good news. One step at a time is soooo exhausting, but you're doing it.
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I survived all my scans yesterday. In addition to the bone scan I got the day previously, by the way that came back all clear other than arthritis in my feet back and hips. Yesterday I got a ct of chest abdomen, and pelvis, a echo, an ecg, another breast mri, another biopsy, and 11 viles of blood taken. It was a rough day but thank God it’s over.
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My goodness hray, you went through the wringer. Hoping for good results.
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Hray, as far as how to talk to your children, you might ask the nurse if your hospital has a Child Life program or a social worker who can give you guidance and support on that.
And regarding your long-time tiredness, have they checked your vitamin D level? That test is not on the standard CMP panel that checks for iron levels and other things; 25 OH-D test has to be ordered separately. Breast cancer patients are often deficient in vitamin D, and low D may be a risk factor. Low D can affect your energy and immune system. Many of us take vitamin D3 capsules regularly on our oncologists’ recommendation.
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hi! So sorry to hear about your diagnosis. I was diagnosed 5 years ago with Stage 3a Invasive Ductal Carcinoma. I agree with you when it comes to the mastectomy. I didn’t even question my decision and five years later it was one of the best decisions I have made in my life. I didn’t want to have to go through everything then worry about it coming back in the other breast. I wasn’t worried about appearance or anything like that, my main goal was to get this cancer out of me and it never come back! I had to have the left breast removed because I had cancer in two spots. So that put the idea of a lumpectomy out. However I had made my decision before I stepped foot into the surgeons office. Depending on how big the tumor is will decide whether they want to give you chemo before or after surgery. I had mine in two spots, one was bigger than the other and it had spread to my lymph nodes. They decided to give me chemo after the surgery because it suited me best. It was a long road and seemed like it was never going to end. But my advice, although it sounds cliche, is to stay positive and have faith that the Lord is going to get you through this. The positivity made all the difference in my chemo treatment. Instead of feeling sorry for myself I kept my spirits up and tired to laugh and smile even though I didn’t always feel like it. And that’s ok too but just have a positive outlook on life, your treatment, and how great life will be after cancer. That day will eventually come...trust me it’s a long road that seems like it’s never going to end but it does and there is life without cancer. I will keep you in my prayers...it’s gonna be oka
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thank you everyone. Shetland pony, and the vitamin d3 supplements prescribed or can you get them over the counter? And if so which kind do you take? Also anyone start chemo before you got your port in? Depending on how fast my mammoprint comes back I'm supposed to start chemo feb 6 but I have an appointment feb 7 for what I think is my port. The notification just says cath lab. But I'm assuming that's for my port. There's a possibility that chemo won't start till the 13 of the mammoprint doesn't come back in time but they were pretty certain we would be able to start on the 6th. Does this port placement date mean I won't start till the 13t or will they do IV chemo on the 6th then put the port in on the 7th? The chemo I'm getting first is Taxol if that makes a difference. I'll be calling tomorrow so confirm things but just curious if anyone else started chemo before they got their port?
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hray - I take extra strength Vit D soft gels, 2000 UI from Costo. I used to take 2 pills a day (4000 IU) but have dropped back to one.
Sorry I can't answer the chemo/port question. But I don't understand why they would start chemo before the port is in - since you can usually be slipped into a chemo chair anytime.
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hray, I was taking over the counter Vit D, but it was making me sick. Primary care Dr. prescribed once a week capsules 1.2 MG (Drisdol), before my dx and it's been fine, and cheaper for me. I had a friend who had first treatment before port placement. They didn't want to delay the treatment. I have all my treatments without a port, but I'm not on Taxol which I think needs a port to prevent vein damage.
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I took 5,000 IU/day, Vit D3. I believe the brand my MO had me get was "Pure." Get a good brand as it's a very important vitamin.
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You can get chemo the same day as port surgery. You also can get chemo via IV if you start before the port placement. Taxol would be okay. AC is what they usually try to avoid unless there's a port. It does depend on the doctor though.
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