Surprise upgrade of benign radial scar to IDC grade 1 t1b
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@ichan I understand. I think most of us do. Waiting can be so difficult and time seems to slow down for us new cancer patients!
It’s been 4 months (!) since I first discovered my lump and although it is now removed, I haven’t yet met with my oncologist again to discuss and start treatment. The waiting is hard but I keep reminding myself that it’s out of my body!! I’m going to hope and assume it’s all gone, no stray cells remaining. (I’ll still do the treatment just to be sure.)
A friend told me in the beginning that it’s actually good when the doctors and surgeons are not in a hurry to schedule us. They know which cases are urgent and need immediate attention (like hers - she was Stage IV when first diagnosed and they got her in super fast for everything!) so she said it was a good sign for me that they were not rushing me in to surgery. That was reassuring! And she is 5-6 years from her diagnosis and doing well, also very reassuring!
Well, we both get to cross another day off our calendars! Have a good night and try to get some sleep.
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@needs.a.nap thank you very much for responding. My right breast biopsy is scheduled for coming Thursday. Once that’s is done based on the results my SLNB will be scheduled.
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I got my right biopsy done today. I will have to wait for the results. Looks like my sentinel lymph node biopsy will be done in second week of October. I am concerned that the gap between my lumpectomy and lymph node biopsy is too much. Can you share your thoughts here? I spoke to my breast surgeon and she says that since the tumor is small and slow growing there is a very small chance that we might find positive nodes. This huge time gap is very unsettling and bothering me. What if something not seen in the MRI spreads? I am in this endless loop of worries.
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Hi @ichan , Your doctor has given you valid advice. It is extremely unlikely that your bc has spread to the nodes. BC like yours and mine does not spread like lightening. When my imaging was viewed retrospectively they found my tumor had been there 2 1/2 years before it was diagnosed. Yes, it was bigger and had spread to one node but it was still early stage. If your worry is disabling see your PCP about getting help for it. It's good that the second biopsy has been done.
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Hi @ichan. That’s very good news on your right breast biopsy results! Hopefully you can get the SLNB soon and finally have that important bit of information.
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@maggie15 @needs.a.nap I am able to get an earlier date for my SLNB. One week away from today. Thank you very much for replying.
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@maggie15 @needs.a.nap i got my sentinel node biopsy results today. The surgeon took two nodes during SLNB. Both came back as clear and nothing suspicious found. Thank you very much to all of you for helping me get through these initial phases. I have my radiation oncologist and oncologist appointments next week. I will get more information about my treatment options then. I will keep you posted.
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@ichan Yay!! I’m really, really happy for you. That was a long wait but those are such great results. Thank you for letting us know!
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@needs.a.nap thank you very much. I am a part if this new sisterhood now. I am really very very thankful for all the support I got from all of you. Everyone was very patient with me even though I asked the same questions again and again. I don’t know what lies ahead but I am at peace at this point of time. I lost my mentor last year around this time to lymphoma which has impacted my mental health a lot. My own diagnosis made me realize how fragile life is. I have a long way to go but I will be more mindful going forward.
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Hi @ichan. I’m very sorry to hear about the loss of your mentor. That’s a large loss. I’m so glad you courageously reached out on here with all your questions! I have a feeling many others will read through your questions and be grateful for the information.
We all have had our turn … to need comfort and reassurance and have someone answer our questions when we are vulnerable and scared … and then we can in turn offer that to the next ‘sister’ who joins here.
I have enjoyed being a part of one of the support groups for those “In Treatment” … everyone is in the same boat and I have gained strength from the strength of everyone else there!! I’m also comfortable doing a private Zoom visit sometime if you ever want to talk face to face. You are welcome to private message me anytime if you’d like to meet that way. We all gradually find our strength through this.
I hope you have a good day @ichan 😊
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@needs.a.nap thank you very much for your kind words. Will definitely reach out to you.
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I met my medical oncologist and radiation oncologist yesterday. I am planning to go with 4 weeks of radiation which includes one week with boost. It will be followed by tamoxifen for 5 years. I also had my diagnostic mammogram today and I was given all clear for radiation therapy.
Please share your thoughts and experiences. I really appreciate your input.
Summary -49 years old female with IDC er+ pr+ her2 - 5.5 mm. No nodes. Lumpectomy and SLNB done.
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Hey ichan,
That sounds like what I had, but I was younger and my tumor was somewhat larger.
Radiation was basically fine for me but I'm really glad I was able to take a leave from work. I think that I needed that time, mentally and emotionally, to recover from the roller coaster that was the diagnostic process and initial treatment, and to be able to focus just on me. Of course, for others that depends on their work and financial situation.
Tamoxifen did a number on me (fatigue like crazy) and after trying a bunch of things (splitting the dose to morning/evening, lower dose, different generic brands), I ended up changing to its sister drug toremifene. I feel lucky that my MO was willing to try that for me and that my insurance is covering it even though it is not domestically approved for prevention of recurrence (overseas it is used that way in other countries).
The ongoing sensations from the SNLB was the most surprising. It ended up feeling like a lot more recovery from that than from the lumpectomy, and I wasn't expecting it.
I'm coming up to my five years soon but I will stay on the drugs if my doctor okays it.
Hope that helps, good luck!
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@salamandra thank you very much for your input. Looks like we are on a similar path for treatment.
From work point of view these coming two months will be very slow for us at work so I can manage. My manager is up to date on my health issue and is very accommodating.
I am not sure I can manage the breathing process for the radiation as I am extremely claustrophobic. Hoping I can get through this.
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Hi @ichan , The LINAC machine moves around you to direct the beam as you lie down so it shouldn't cause claustrophobia. You can always see most of the room. It's noisy but not as bad as an MRI. I had one treatment in a combined LINAC/MRI machine (generally reserved for research) because the usual machine was down but they only took volunteers who didn't mind going in the tube. It saved me from having to add another day onto my treatment time. I hope your radiation goes well.
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I was recommended to take advil before the first mapping appointment and I forgot. I would recommend to take it for that and maybe even every day, especially if you expect to be stressed and might hold yourself stiffer or clench. (The mapping takes much longer and they are moving you around and holding you in position a lot).
Also definitely mention to the techs that you are feeling stressed - even if you don't know what they can do for you, they will be able to be more supportive and might have some ideas. Many places will let you choose some music too.
One of the things that made radiation nicer for me was going at the same time every day and starting to get to know one or two people who were also feeling chatty and that we could kind of support each other. You actually spend a lot more time changing and waiting than actually in treatment, so think about what make you feel nice with that time (easy clothes to get in and out of it, reading or phone games, music, etc).
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@salamandra thank you very much. I will definitely follow your suggestion of taking an advil. I am also planning to go at the same time slot everyday if possible to keep up with my work routine as well. Morning session vs evening session - will it make any difference? I am planning to choose something at the end of my work day if available so that I can call it a day afterwards.
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@maggie15 @needs.a.nap I went for my radiation simulation yesterday. It was not that bad. I think I will be able to do it. I will be starting my treatment next week for 4 weeks.
@needs.a.nap hope you met your oncologist and got your treatment plans.
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Hello @ichan. I hope all goes really well for you!! Since I had a mastectomy and clear nodes, I didn’t need radiation and no chemo, for which I am very, very grateful. I started Tamoxifen about a month ago. So far so good, no obvious side effects. Thank you so much for asking 😊
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@needs.a.nap it is very nice to hear that you are tolerating tamoxifen well. My best wishes to you.
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I had my first session of radiation today. The techs and nurses were very under and kind. I have 29 more sessions to go.
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