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Topic: Diagnosed today with IDC. Overwhelmed.

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Jul 15, 2019 04:47PM

Karen2019 wrote:

I was diagnosed earlier today with IDC, but was not given much information about my tumor or the timing of the process for dealing with it yet, so I am very anxious and frustrated. While I wait for the recommended surgeon's office to contact me regarding a first appointment, I am so grateful that forums like this exist. Just starting to read about other women's experiences with this is helping my fear and anxiety.

Dx 7/15/19 at 52, IDC, Right, Stage 1, Grade 3, ER+/PR+, HER2-
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Jul 15, 2019 04:54PM vampeyes wrote:

Hello Karen, I am sorry you are finding yourself on these boards. For me I didn't know any of the details till after my surgery. The waiting and wondering is the worst part, the unknowns that lay ahead. There are going to be many women and men to chime in here and offer you support.

Hugs

Diagnosed at 41. Oncotype 21 Dx 9/20/2017, IDC, Left, 1cm, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2017 Lumpectomy: Left Surgery 11/15/2017 Lumpectomy: Left Radiation Therapy 1/29/2018 Whole-breast: Breast Hormonal Therapy 3/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 15, 2019 05:13PM Karen2019 wrote:

Thank you vampeyes. While I was waiting for the results of my biopsy, I did a little research about BC, but didn't understand that some of the biggest decisions have to be made almost right away, before knowing a lot of the information I thought I would have to know to be able to even MAKE the big decisions. Somehow it didn't dawn on me that I wouldn't have more time for research. Apparently I'm due for some late nights on the internet.

Dx 7/15/19 at 52, IDC, Right, Stage 1, Grade 3, ER+/PR+, HER2-
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Jul 15, 2019 05:16PM Spookiesmom wrote:

Yes, when you hear your name and cancer in the same sentence your world shakes off it’s foundation. It’s the worst place to be. We’ve all been there, it’s frightening, annoying, and you want it all done yesterday. It will get better. There will be seemingly unending tests, dr appts, It will be over, and you will be amazed at yourself and your strength.

Hugs.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Jul 15, 2019 06:54PM edwards750 wrote:

We know how you feel. I was definitely clueless too at the start.I went through the process in a fog. Got my marching orders and scheduled the surgery. BS recommended a lumpectomy. Oncologist said radiation. I did them. Take Tamoxifen. I did that for 5 years.

My point being I was in shock when I was DX but the medical personnel still kept crunching numbers and percentages. Like I would know what the heck she was talking about.

Do do your homework because it’s helpful. Just don’t believe everything you read on the internet. It isn’t always correct and doesn’t necessarily apply to you anyway. BC is not a one size, fits all disease.

Don’t be shy about asking questions of your doctors/medical team. After all it’s your body and your life.

Just so you know I was DX with IDC 8 years ago next month. So far, so good.

Diane

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Jul 15, 2019 07:52PM Moderators wrote:

Welcome, Karen2019! We're so sorry you find yourself here, but we're glad you've joined our community and hope you find this to be a source of support as you begin down this road. The first days and weeks can indeed be very overwhelming, but we're all here for you. When you're ready, you'll find lots of information and member who've been in your shoes in our IDC forum: https://community.breastcancer.org/forum/96. Just take it a day at a time!

The Mods

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Jul 15, 2019 08:00PM jessie123 wrote:

Karen - don't worry about having to make a decision immediately. They do a lot of tests before the surgery --- I had a bone scan and MRI. I also got a second opinion. I was diagnosed in November and didn't have my lumpectomy until Feb 21st. My tumor was not fast growing and they knew that from the biopsy. I think most people have their surgery a little sooner than I did, but I was fine and my surgeon wasn't concerned about it.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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Jul 15, 2019 08:40PM OnTarget wrote:

Hi Karen,

I'm sorry to hear about your diagnosis.

I too had a lag between meeting the surgeon for the first time and my BMX. We did the MRI which caused me to have a biopsy on the other side, and then we added in the bone scan, and I also needed a CT scan and a liver/guts MRI. Plus I had to meet with the plastic surgeon. You will most likely have some time to do some research and thinking. From my point of view it was too much time waiting! That was the hardest for me!

I'm so happy now that I've had my BMX. A weight is lifted from my chest (ha ha). I was so stressed and after the BMX it was gone!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 19, 2019 04:37PM msphil wrote:

sweetie till today I still remember those same feeling but I'm here to tell things will ease up after treatment plan is in effect I was planning our 2nd marriages to man I prayed for when I found the lump all of a sudden it was there at only 42. I had my cry and decided to fight. Once I had a plan things did ease up I did have to get meds to sleep but I told this cancer you have to leave my body. Positive thoughts and lots of Hope with faith also I am this yr a 25yr Survivor Praise God. I know I'm here for the purpose of Inspiring others like you to fight with Hope. msphil idc stage2 0/3 nodes 3 3mo chemo cytoxin 5fu adriamycin before and after Lmast got Married then 7wks rads 5days wk 5yrs on Tamoxifen.

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Jul 19, 2019 04:56PM Eigna wrote:

Hi Karen2019, So sorry that you were diagnosed with IDC. Can you tell us a bit about your symptoms and what birads grade you got on your mammography?

Dx 2019/08/20, IDC 0.9cm ER+, PR-, HER2 - (FISH) Grade 3
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Jul 19, 2019 05:06PM Flower216 wrote:

Karen...sorry about your diagnosis. It definitely is overwhelming..you will learn a lot of new terminology which you never thought would be part of your life. When I was diagnosed someone told me "just take one step at a time", and that really helped.

Dx 9/19/2018, IDC, Right Surgery 10/14/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/30/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 1/16/2019 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide) Radiation Therapy 3/11/2019 Hormonal Therapy 5/12/2019 Arimidex (anastrozole)
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Jul 21, 2019 01:25PM Karen2019 wrote:

I have now had my first appointment with a surgeon and received the path report. Stage 1, Grade 3, ER+, PR+, HER2-. He recommends surgery within 4-6 weeks. He felt all of my mammograms and ultrasounds were good quality, showed no other areas of concern, and therefore he didn't feel further imaging was needed. I am hoping to get a second opinion in the next week or so, and the surgeon recommended is one that routinely has patients get MRIs. The surgeon I already met with says to be prepared for an MRI, because it is so extremely sensitive, to show a lot of other questionable spots that they will then want to biopsy, which will most likely be nothing. I'm all for additional testing generally, but I don't want to delay surgery on a bunch of false positives. Has anyone encountered this situation before? If so, how did you handle it

Dx 7/15/19 at 52, IDC, Right, Stage 1, Grade 3, ER+/PR+, HER2-
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Jul 21, 2019 04:24PM Salamandra wrote:

Hey Karen2019,

That is is some good news on the ER+PR+ and small size.

My surgeon had me do an MRI. It showed absolutely nothing that concerned her, so it's not a certainty that the MRI will show other areas of concern. I have read of other women on these boards. where docs discovered things in the MRI that impacted their treatment and so were very useful. I'm not sure why 'false positives' would have to delay surgery. If you can get in for an MRI soon, the results are fast to get (or at least, they were for me), and biopsies don't have to take long either. 4-6 weeks should be plenty of time.

The MRI was very helpful for my peace of mind...

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 21, 2019 05:17PM SimoneRC wrote:

Hi Karen2019!

My surgeon sent me for an MRI. Like Salamandra, my MRI did not show any other suspicious findings. I agree that 4 - 6 weeks is very doable. I had my Ultrasound and Core Biopsy on 2/16. MRI on 2/27. Was originally scheduled for Lumpectomy on 3/14. That only changed when the genetic testing results came back, it did not change due to anything from the MRI. It’s a stressful time and you will get through it. Hang in there

ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy Surgery 4/6/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 5/5/2018 Arimidex (anastrozole) Surgery 7/3/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/29/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/29/2019 Prophylactic ovary removal Surgery 8/5/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Jul 21, 2019 05:28PM Scrafgal wrote:

No MRI here, but had CT, PET scan and bone scan after multiple biopsies. A mastectomy was in my future no matter what, given the circumstances. So that's why I didn't need an MRI.

Dx 12/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Surgery 2/5/2017 Mastectomy: Right; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy 3/22/2017 Taxol (paclitaxel) Chemotherapy 6/14/2017 FAC Hormonal Therapy 9/27/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/12/2017 Reconstruction (right): Fat grafting, Silicone implant Surgery 3/15/2018 Reconstruction (right): Nipple tattoo Surgery 5/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting Surgery 5/9/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Jul 21, 2019 05:54PM bella2013 wrote:

Karen2019, if the BS recommends an MRI...DO IT!!! Don’t let the medical community scare you with false positives. I would take the risk of a false positive any day of the week than not know what the mammo and ultrasound might of missed.

The breast MRI is one of the most useful diagnostic tools available to you. The MRI can pick up other areas of concern that the mammo and US missed. If you have to have those areas biopsied and they turn out to be benign then you have information you did not have before. Imagine making a decision to have a lumpectomy or mastectomy and not knowing what else might be there that was missed.

When my gynecologist found my lump he measured it at 5 cm. The diagnostic mammogram, ultrasound and biopsy measured it at 1.8 cm. The MRI measured it at 5 cm and indeed it was 5 cm. That information was crucial for me and my team. The MRI also showed that my right breast was healthy. The left breast received so much attention that I was worried that my right breast might not be healthy. The MRI will bring you peace of mind. I also think it’s reckless of the BS to steer you away from an MRI. Even if your surgery was delayed you will be ok. My cancer was discovered on 11/17/17, I had the diagnostic mammo and ultrasound on 11/22/17, my biopsy on 11/28/17, received the dreadful news on 12/4/17. Had a breast MRI on 12/9/17. Met with my cancer team on 12/16/17. Had a lumpectomy on 1/4/18. Nodes were clear but there was a question about the margins. Had a BMX with DIEP Flap Reconstruction on 2/22/18. That’s kind of a normal time frame with ER+/PR+/HER2- cancer diagnosis. If you were triple positive or triple negative the treatment plan would look quite different because those are more aggressive cancers. My point being you have time for a second opinion and time to gather as much information regarding your cancer and treatment plan.

Believe me, we all wanted the cancer cut out ASAP. Stay close to this group. There’s loads of experience and advice.

Sending thoughts and prayers as you walk through this difficult stage.

Bella2013

Diagnosed at 60 years old. Oncotype Score=14. Dx 12/4/2017, IDC, Left, 4cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 1/4/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 2/22/2018 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Jul 21, 2019 06:56PM Karen2019 wrote:

Thank you for all the advice about the MRI, ladies. After reading all of your posts, I'm not even sure why I was hesitant. I guess my brain is still overwhelmed by the diagnosis and is not thinking clearly. I've only been a member hear for seven days and I am already amazingly grateful for everyone's willingness to share their support and experience with me. It is invaluable.

Dx 7/15/19 at 52, IDC, Right, Stage 1, Grade 3, ER+/PR+, HER2-
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Jul 21, 2019 07:36PM OnTarget wrote:

I had an MRI and it was very helpful. I'd been diagnosed with cancer on the left, but the MRI found a tiny cancer on the right.

If I'd only gotten my left removed, I'd probably be faced with a "recurrence" on the right a few years later, once it grew big enough.

The MRI was key and I'm so glad they found the cancer!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 22, 2019 05:28AM edj3 wrote:

Chiming in--I also had an MRI after the initial dx. I've got very dense breasts and the mammogram didn't catch the cancer, the ultrasound did. So I most definitely wanted a good solid look at my right breast to make sure nothing wacky was going on there (and nothing was).

Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 5/31/2019 Whole-breast: Breast
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Jul 22, 2019 07:28AM arizonaboundgal wrote:

Hey Karen. Glad to hear that you're thinking about the MRI. I actually had one before my BC diagnosis and because it showed a bit of LCIS/atypical cells in an adjacent area of my breast, my surgeon recommended a mastectomy versus lumpectomy.

Enjoy every sandwich--Warren Zevon
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Jul 22, 2019 10:01AM Karen2019 wrote:

I have now decided to DEFINITELY get the MRI. (That is, if I can just get the my GYN to send the 2nd opinion doc the "doctor's copy" of my biopsy path report, so they can actually schedule the appointment! Has anyone else been given a "patient's version" of their path report, which apparently is not the full version? I found this odd and a bit insulting.

Dx 7/15/19 at 52, IDC, Right, Stage 1, Grade 3, ER+/PR+, HER2-
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Jul 22, 2019 10:15AM SimoneRC wrote:

Hi Karen2019,

You are absolutely entitled to your full pathology report. Period. It is a good idea to keep a binder with copies of all your full reports. Great to keep on hand so you can make copies for your other providers who may not have them. Insist to your GYN’s office that you will be there to pick it up. You could also call the pathology group that did the report, but you absolutely should not have to do that. These are YOUR records. Stand firm, be your own best advocate.

ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy Surgery 4/6/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 5/5/2018 Arimidex (anastrozole) Surgery 7/3/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/29/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/29/2019 Prophylactic ovary removal Surgery 8/5/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Jul 22, 2019 10:25AM SimoneRC wrote:

Me again! Another idea just to keep your life as simple as possible. Assuming the Breast Surgeon received a copy of the full pathology report, you could also ask them for a copy of it for your records if your GYN has any push back. It should not be an issue at all to get the full copy.

ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy Surgery 4/6/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 5/5/2018 Arimidex (anastrozole) Surgery 7/3/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/29/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/29/2019 Prophylactic ovary removal Surgery 8/5/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Jul 22, 2019 10:49AM SUPer52 wrote:

Hi Karen,

Just wanted to send out my support to you. Six months ago, I was where you are now. I think I will always remember the worry and anxiety I felt at the time, but rest assured, it does get better. Good news about being Her2- for sure. I did not have an MRI before my surgery, but had I been offered one, I would have gladly accepted and I actually plan to ask about having MRI as part of my contnued follow up care when I see my breast surgeon next month for my first follow up mammogram and ultrasound since this whole ordeal began. At the time, I just wanted to have the lumpectomy and especially the sentinel node biopsy bc once I received the diagnosis, my greatest feat was that it might have spread already. (It hadn't.) My surgeon was comfortable with me waiting a few weeks to have surgery, but I wanted it as soon as possible. In hindsight, I should have waited a little to give myself time to think of questions such as "should I have an MRI?" etc. When my margins did not come back totally clean after my lumpectomy, I did feel more comfortable waiting a little longer to have the re-excision in order to receive the results of my genetic testing in case they would change my decision regarding mastectomy vs lumpectomy (they didn't),

Best wishes to you as you move forward with your care!

"My mission in life is not merely to survive, but to thrive; and to do so with some passion, compassion, some humor, and some style." -Maya Angelou Dx 1/15/2019, DCIS/IDC, Right, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 1/23/2019 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 2/25/2019 Lumpectomy: Right Radiation Therapy 4/8/2019 Whole-breast: Breast, Chest wall Hormonal Therapy 5/11/2019 Arimidex (anastrozole)
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Jul 23, 2019 08:37AM mom2bunky wrote:

Welcome Karen, I too was where you are in March. It's the absolute worst place to be in the entire ordeal. You're going to handle this, you are strong, and you're going to get through it. Agree with the others to have the MRI if it is offered to you. I had one so early in the process that I didn't even really fully comprehend just why I was having it. Get yourself a good team that will answer your questions, and spend a lot of time here with us. We'll answer whatever you need and hold your virtual hand. It sucks. It just does. But you've got this, you just don't know it yet.

Dx at 55. KI-67: 18. Oncotype: 24 Dx 3/26/2019, DCIS/IDC, Right, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 5/10/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/26/2019 Whole-breast: Breast Hormonal Therapy 8/6/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 24, 2019 06:13PM purplejc5 wrote:

Hi Karen

I’m so sorry that you’re part of a group that you weren’t asked to join, but we’re glad you’re here. March 6th my world exploded. I was diagnosed with DCIS and if that wasn’t bad enough, IDC on March 19th. I asked my BS how much time I had to make my surgery decision (what I would have done). He said several months. I knew I wanted this thing growing in my body, out as soon as possible. I elected for lumpectomy and had my surgery on April 4th. The waiting for test results and Dr appts to arrive is the hardest. Once you have a plan for surgery and treatment in place, it is a little easier. One word of advice, take your journey one day at a time (this was extremely hard for me since I’m a planner) but it was one of the best things I could have done instead of thinking what could happen days,weeks,months ahead of time. (((Hugs))) to yo

Dx 3/6/2019, DCIS, Right, Stage 0 Dx 3/19/2019, DCIS/IDC, Right, Stage 0, Grade 1 Surgery 4/4/2019 Lumpectomy; Lymph node removal: Right Radiation Therapy 5/16/2019 Whole-breast: Breast Hormonal Therapy 6/18/2019 Femara (letrozole)
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Aug 6, 2019 09:12PM Sara1203 wrote:

Karen,

I was diagnosed last week with IDC. I've seen most of my path report but dont understand all of it. I know its er+ and pr+. I meet with a BS tomorrow. I'm also terrified but slowly learning.

I'm 44 with no known family history. We're definitely not alone.

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Aug 7, 2019 09:48AM Karen2019 wrote:

Sara,

I know exactly what you are feeling. It is indeed terrifying, especially because there is suddenly so much you have to learn quickly to be able to make decisions. But it can be done. I have literally spent the last three and a half weeks arranging doctors' appointments and MRIs and genetics testing, and reading everything I can to get myself up to speed on what my options are.

This forum is an amazing place to learn about BC and to talk to women in similar situations. Everyone here has an experience that you can learn from and take some comfort from. If it weren't for this forum, I might not have gotten a second BS opinion just a week after my first one, and wouldn't have known that I could have oncoplasty along with my lumpectomy. The first surgeon never even mentioned it, so I wouldn't have even known to search for the term in this forum to learn how other people have experienced it. I also wouldn't have known that there are breast health clinics out there that can see you even before your surgery to help you try to avoid arm stiffness and lymphedema from day one. My first surgeon didn't tell me any of that either. (Clearly I quit my first surgeon and transferred my care to the second one!)

The biggest lesson I've learned so far is to educate myself and then advocate for myself. It is uncomfortable sometimes to have to tell a doctor "I'm going with someone else", but this is too big a deal not to get the best treatment you can from doctors you are comfortable with. It's a lot of work - I am calling it my second job, as I am spending as much time organizing everything for my BC treatment as I am at my regular full-time job. (Luckily my bosses are the best and completely understand!)

So definitely explore this forum in as much detail as you can - most of my questions were already answered somewhere on it. And if you don't easily find an answer to a question, start a new thread and ask it. Even if there are 10 other threads out there about it, the wonderful women on here are happy to answer the question again. They are wonderful.


Dx 7/15/19 at 52, IDC, Right, Stage 1, Grade 3, ER+/PR+, HER2-

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