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Topic: Tips for getting treatment started quickly?

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

Posted on: Feb 8, 2019 01:42PM

HOPE012119 wrote:

Hi,

I'm so glad to find this group!!! Smile

I received my diagnosis 19 days ago on Jan 21.

Community Radiology Associates has done all the testing since the first week in January when I went in for my 40 yo baseline mammogram (37 days ago).

I have IDC confirmed with three biopsies (breast and one lymph node) completed on 1/17 (15 days after first suspicious mammo).

Two days ago, I received a copy of my pathology report for the first set of biopsies done on 1/17 (17 days after the diagnosis).

I transferred care from my OBGYN and so far I have had my first consultation with the SO (5 days ago) and the PS (yesterday). But both apparently need more info before a plan can be finalized.

Now, it sounds like the Medical Oncology office needs the genetic testing results back (which might take 11 more days) before they will meet with me.

From what I can piece together (I think the genetic test is the only thing missing) it may be possible for the doctors to come up with a plan by 2/19 (I hope) since I think they'll have the genetic testing back by then. The PS said it could take 3 weeks before the surgery so that might put me at March 12 by my estimate (50 days from diagnosis or 34 business days). Which sounds like the average amount of time it takes from diagnosis to double mastectomy surgery (I think the average is 40 days).

In general, when called back, I take the first available appointment for tests and consultations. And I meet with the specialists with earliest availability. But still, this process seems so very s-l-o-w.

Do you feel that way too? Does my timeline look typical to you?

What are your tips to avoid delays with the process of setting up a plan and starting treatment?

Thanks!!

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Feb 8, 2019 03:36PM kber wrote:

hi. For starters, persistence. I also had my doctor intervene when being unable to schedule a test could have delayed my treatment.

Does your insurance come with a health advocate? Mine was able to help with pre approvals.


Finally, if it takes longer to get all the info needed to craft the right care plan, maybe that’s ok?

Dx 11/2018, IDC, Left, 5cm, Stage IIB, ER-/PR-, HER2- Chemotherapy 12/7/2018 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Feb 8, 2019 03:37PM Moderators wrote:

Dear HOPEO12119,

Welcome to the BCO community. We are sorry for your diagnosis but so glad that you reached out to our members. Here are a few suggestions for tips on looking for responses. You might take a look at this thread which is similar to your about Wait Time Between Diagnosis and Surgery. You also might want to visit the Surgery Forum or take a look at the February Surgery Thread. While these topics may not exactly be your situation, you may find some members whose stories are similar with whom you can connect. Waiting is the worst part of this disease as many of our members will say. We hope that you will stay active here and benefit from the support of others. Let us know if we can be of help in anyway. The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Feb 8, 2019 03:38PM edwards750 wrote:

It’s hard to really say because every medical facility seems to operate on different timelines. I was DX in January and my surgery was in March. Waiting is intolerable- we all truly feel your pain. Idk how you can hurry them up but I would let them know you are available is there is a cancellation.

There is a cancer clinic here that has an overflow of patients but it’s the best. I went there for my oncologist and annual mammograms. There were always a lot of people in the waiting room but they did head us up and move us out quickly.

I would have my name on the waiting list for an earlier appointment just in case.

Good luck!

Diane

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Feb 8, 2019 04:48PM HOPE012119 wrote:

Thank you kber! Great advice. I will check to see if we have a health advocate. And yes, when you say it like that, you are so right about getting the right plan in place. I will take that to heart and try to remember your words of wisdom when it seems like the process is slowing down! I think I have been lucky to find really talented specialists. I will try my best to trust the process. Thanks so much for the encouragement!!

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Feb 8, 2019 04:53PM HOPE012119 wrote:

Thank you, Mods! There is such a wealth of information on this site, I hadn’t seen the wait times thread. I will look at it now. The other threads will help me prepare for the future too. Thank you so much!

Yes, I can see now that the waiting part is pretty stressful! I’m so happy to find this community. Thanks for all you do to facilitate it! What a gift!

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Feb 8, 2019 05:07PM HOPE012119 wrote:

Hi Diane,

Thank you so much for sharing your experiences. I will take a deep breath and know that other women have waited months too! This is so helpful to know.

And I’m glad to hear about your technique of getting on the waitlist. I tried that last week when I was waiting for yet another biopsy appointment (alas there weren’t any cancellations). It made me feel better to speak up for myself.

Hearing about your self advocacy is inspiring! I will try and follow that approach too. Thank you so much!



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Feb 8, 2019 07:06PM Dani444 wrote:

Hope- so sorry you need to be here but it really is a great place for info and support! As seen in my signature I was dx in August and my surgery was in October. I did have to wait to get my genetics and I also needed an MRI that led to a second biopsy. Another part of my waiting was for tumor board, as they were deciding on what surgery I needed. I had a slow growing cancer so I wasn’t concerned about the wait, I was glad for their diligence. Coordinating the BS and PS came into play as well.

Do you have a nurse navigator that coordinates your appointments? I told her I was willing to do testing at any of the facilities in the area that were in the same health system. So I had to drive a bit further at times but was able to get some testing done sooner.

Waiting is the worst part for sure. At times it did feel like forever during the process. I wish you the best as you finalize your treatment plan. It was a huge help for me to join the surgery group for the month I was having my UMX. Take care and let us know how things are going. We are here for you

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 8, 2019 07:52PM Polly413 wrote:

Hope - My mammogram was on April 27, surgeon appt on May 17, stereotactic biopsy was on May 19. Based on small size of tumor (7mm) and no clinical evidence of node involvement my surgeon was very adamant that I have a lumpectomy rather than a mastectomy, and she foresaw just radiation not chemo. For that reason she kept insisting that I see the radiology oncologist whereas I wanted to see an MO before surgery. Saw neither one but in the meantime BS wanted genetic test because I had a cancer 18 years before in the other side. Test was done on May 30 but calendar pages kept flipping and no results. So I called the surgeon and pleaded to have the surgery and she agreed and scheduled me. Ironically the tests results came back on June 13 (all clear) 2 days before the surgery June 15. My point is sometimes you can get the surgeon to proceed before the genetic test results come back. I did not have the first MO appt until July 14, a month after surgery and 2 and 1/2 months after the mammogram. Had to wait for results of mammoprint and so chemo did not start until August 15. Boy did the process seem slow to me! Hang in there. It gets better. Polly

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Feb 8, 2019 08:52PM HOPE012119 wrote:

Hi, Dani444!

Thank you so much for sharing your experiences! I hadn’t heard of a tumor board so I had to look that up. It seems like the tumor boards assist with more complicated cases of breast cancer? Does that sound right?

The SO shared that my BC is grade 2 as well. So that’s reassuring to hear your positive words about it being slow growing.

I don’t have a nurse navigator. Scheduling is sure taking more time than I expected. I will ask if there are any nurse navigators available at my cancer center. Thanks for the head’s up about that! It sounds like it could really help!

Thanks so much!

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Feb 8, 2019 09:32PM HOPE012119 wrote:

Hi Polly!

Thank you! 😊 you’re right, it will get better!

I’m glad your surgeon listened to you! Wow, and your instincts were correct!

I hadn’t heard of the mammaprint genomic testing. I have so much to learn!

Thanks!

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Feb 9, 2019 10:02AM claireinaz wrote:

You might consider letting your team know that you are willing to take a cancellation spot when tests are scheduled and be ready to drop everything and go. My husband has always been able to see his docs more quickly when he shares that information with them.

40 days seems like a pretty quick span, considering there's a lot of prep that goes into surgery, a lot of pre-surgical planning, etc.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Feb 9, 2019 10:16AM - edited Feb 9, 2019 10:19AM by SimoneRC

My timeline.... Mammogram 3D, ultrasound, biopsy 2/16. Results 2/20. Met Breast Surgeon and Radiation Oncologist 2/25. Blood draw for genetic testing 2/25. MRI, got on cancellation list, 2/26. Lumpectomy scheduled for 3/14. Genetic tests results called for change of plans. Met with Platic Surgeon 3/15. Bilateral mastectomy with tissue expanders placement surgery 4/6. Final pathology results 4/16. Met with medical oncologist 4/18. Ordered oncotype test 4/18 and DEXA scan. Began AI 5/6. Phew!!!! It does seem to take a long time!!! For me, it seems like being treated at a major academic hospital/world famous National Cancer Institute was a plus. They were very organized and accommodating.

Good luck and please keep us posted. This is a great resource, especially as you begin.


ATM Gene Mutation, Deletion. Exons 62 & 63. IDC w/Lobular Features and Focal Mucinous Features , Pre Pectoral Reconstruction
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Feb 9, 2019 05:08PM HOPE012119 wrote:

Thank you, Claireinaz!

I will try your husband’s technique! I’m beginning realize that more time goes into planning than I ever realized!

Thanks!

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Feb 9, 2019 05:13PM HOPE012119 wrote:

Thank you, SimoneRC!

It helps to hear about your timeline and steps you completed. It really makes me realize how each journey is different! And there are a range of treatment plans. Thank you so much for sharing!

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Feb 9, 2019 07:17PM AMLMom wrote:

Hi, I was diagnosed early November and after several delays pending results, my surgery is this coming Wednesday. 3 months

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Feb 10, 2019 06:58AM gb2115 wrote:

I think I had surgery within a month of diagnosis, but I recall my surgeon saying she was comfortable with a 6 week timeframe. I didn't have genomic testing until after, ordered by oncology to decide about chemo. I had genetic testing before surgery but the results were not back yet.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Feb 10, 2019 09:24AM Salamandra wrote:

My lump was found August 20, mammogram+US on September 9, biopsy on September 18, surgery on October 18. (Some of those dates might be a day or two off, but they're about right). Of course, who knows how long the lump had been there before my gynecologist caught it.

I asked my MO about a tumor board and she said she wouldn't ordinarily use one for a case like mine, but she was open to it if it would make me feel more comfortable. I ultimately decided I was comfortable going forward without one. My cancer seems to be a pretty textbook case, everything recommended was consistent with what I had researched, all the physical/genetic aspects of my tumor were congruous, and I'm at a well respected cancer center.

For me, he hardest part was waiting between the biopsy results and the first surgical oncology appointment. I was freaking myself out that it was stage 4 de novo, and I was so afraid to look on the internet, which ironically on my case would have reassured me that it was almost certainly early stage. After that, I didn't mind waiting on the surgery from a medical point of view.

I think the urgency for me came from being very anxious about work - starting more or less from the day before I got the biopsy results, I was a mental wreck and trying to be on point at my work (teaching) took every single drop of will I had and I was pretty miserable. I was worried I'd screw up, worried my tenure would get screwed up, worried about using unpaid leave, worried about working when I was doing a crappy job of it, etc. I was much more in a hurry to get started on radiation than to get the surgery - because that would give me, in my head, a solid reason to start my medical leave from work.

I feel like there's such an enormous mental component to this illness, at least there was for me. Physically, it is so much less than I was scared of (after watching my mom die of stage 4 de novo 20 years ago). I mean, it hasn't been easy, but it's been doable. But mentally and emotionally, it required a lot from me - both pushing through at times, and also acknowledging what felt like weakness to me (not being able to work), and accepting it and accommodating it and not blaming myself too much.

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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Feb 10, 2019 02:45PM HOPE012119 wrote:

Thanks for sharing, AMLMom! Wishing you all the best on Wednesday!

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Feb 10, 2019 02:48PM HOPE012119 wrote:

Thank you, gb2115! That’s very interesting to hear how things progressed for you — surgery before genetic testing results were back. I will keep this in mind. Hope you are doing well. Thanks

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Feb 10, 2019 03:35PM HOPE012119 wrote:

Hi, Salamandra!

I feel like I can relate to a lot of what you shared. The emotional and mental part is exhausting. It sounds like they may need to do a fifth biopsy. This time MRI guided. I guess they need those new pathology results + genetics results. If they need the genomic too, I’m going to lose it! Since no one has drawn any blood yet for genomic testing. I think once I get the surgery over with, or at least some sort of plan in place, I will be in a much better place mentally.

I already shared my diagnosis with my boss because I knew I couldn’t keep up with the crazy work load. But that hasn’t changed anything in regards to my workload so far. She’s probably waiting for me to submit my leave requests before making changes. I’ve been out a ton since the beginning of the year for all the tests and consultations. I even had to use leave to track down the reports. I also find it hard to complete all the scheduling tasks during the workday.

I’ll need to start using leave without pay pretty soon. It’s all so stressful. I wish I could just quit! I would rather focus on getting better and being present for my husband and kids. Hearing about your experience makes me realize it might be doable. And I don’t know how we would pay our bills if I did quit.

I’m so sorry you lost your mom to cancer. My mom battled 3 different types of cancer, always stage 3/4. I figured I would get it too but thought I would catch it sooner. My OB told me my cancer’s stage 3 but I’m hoping she’s wrong. I’m feeling some negative feelings about myself for not being more vigilant about my health. Nothing I can do about what’s already passed though. Keep moving forward.

You sound like a very strong woman with a great deal of perseverance! Thank you for being such a wonderful example and reaching out to help people like me!

Thank you so much!
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Feb 10, 2019 09:40PM Mymomsgirl wrote:

Hope - Everyone's journey is different and you have to do what is right for you, but I think it is good to hear what others have been through and it is good to get second opinions too. I'm not sure if your BS is part of a Breast Center or not, but that is something I would advise, I think it is also good to get a second opinion on the surgery aspect as well. My mother died of breast cancer so when I was diagnosed on 10/29/18 I was scared and was like now what. I had my first appointment with my BS on 11/1/18 and she gave me a solid piece of advise..."This is an emotional emergency, not a medical emergency," in fact it has probably been there for 2 years (earlier negative biopsy, another story). It was hard to hear but I knew where she was coming from and we decided to look into this further, I had a blood draw for genetic testing and a breast MRI that day. Everything was pointing to Stage 1, so she wanted to get a clearer picture if my tumor was isolated with the MRI and it came back that I only had the one spot. I decided if my genetics came back positive with one of the high risk genes I would probably go with a DMX, otherwise I would go with the lumpectomy. My BS also advised that I meet with a PS and RO because of the location of my tumor (towards the center of my chest and I would most likely have a divot without reconstruction).

In the mean time I met with another BS to get a second opinion. I liked her as well but the first one made a lot of suggestions of other tests and doctors she recommended that I do and meet with before making a decision. While waiting for the genetic test results the first BS made appointments with a PS and RO with the main goal of doing a lumpectomy. I received the genetic results one 11/13/18 for the high risk genes before these appointments and they were negative, so at that point I was leaning towards a lumpectomy.

On 11/14/18 I met with the PS and she suggested doing reconstruction at the same time as removing the tumor, it is referred to Oncoplasty Surgery (basically the removal of the tumor with immediate reconstruction/reduction surgery, yes I had the right one reduced to match the left). By doing this the skin is in such better shape then doing it after radiation and I would hopefully only need one surgery. Since I was thinking about that route my RO suggested doing my boost of radiation during surgery (Intraopertive Radiation) instead of at the end of radiation (mainly due to the fact that the PS would be moving the breast tissue around there would be no guarantee that the boost was directed to the right area).

So I considered this option and on 11/15/18 reached out to my BS to move forward with the option above, which meant 3 doctors for one surgery. Unfortunately that wouldn't be able to happen until 12/18/18, the soonest they could get all 3 doctors at the same time, but I knew waiting would be the best option for me. I had my surgery, received a report of clear margins and a negative sentinel node biopsy and started radiation on 1/24/19, 15 rounds. Since mine was Stage 1 they also ran an Oncotype test on my tumor to check the risk of reoccurrence and it came back low, so I'm not looking chemo but have 10 years of hormone therapy in my future.

Sorry to be so long winded but ultimately you have to do what is right for you and you are your best advocate. I will say the waiting sucked but my BS gave me something to help me sleep which helped. She said she normally has to write something for sleep and/or anxiety. She said you need to sleep and eat to keep you strength up. Good Luck with your journey and realize you have a whole community here to help support you.

Dx 10/29/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 12/18/2018 Whole-breast: Breast Surgery 12/18/2018 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right)
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Feb 10, 2019 10:13PM Rrobin0200 wrote:

persistence!!! Advocate for yourself!!! Don’t allow yourself to fall through the cracks. Be on top of everything!

Dx 3/6/2017, DCIS, Left, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR- Surgery 3/31/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Feb 11, 2019 08:18AM edwards750 wrote:

Hope - not saying that your OB doesn’t know/isn’t right but the stage of your BC won’t be confirmed until after your Path report comes back. It can and has changed staging for some ladies. I would rely on your BS/MO for that information.

I know BC and all the medical bills that come with it are financial hardships for a lot of women. The charges just seem endless. We have BC/BS and a high deductible($5k) but we reached that in 3 months. I arranged to make monthly payments for several of the bills and the medical facilities agreed to that. I had radiation - 33 treatments when we were at 100% coverage thank goodness. Idk how we would have paid for that. We had exhausted our flex account and savings.

I did have a nurse navigator who was awesome. The hospital assigned her to me - I didn’t know there was one so I didn’t ask. She checked on me and offered advice. I would ask if they have such a person. Additional support is always good.

Good luck!

Diane

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Feb 13, 2019 07:54PM HOPE012119 wrote:

Hi mymomsgirl, rrobin0200, and Diane!

Thank you for your advice and sharing your stories! I appreciate your support so much!

Really, truly, Thank You!! You helped me get through a stressful time! And I will be forever grateful to you!

Thank you!







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