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Topic: Diagnosed a week ago

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

Posted on: Jul 18, 2020 11:34AM - edited Jul 18, 2020 12:49PM by SandyHay

SandyHay wrote:

I'm 45 and I was just diagnosed a little over a week ago with IDC 1-1.5 cm, right breast, grade 2 ER+ PR +. It was caught on my annual mammogram. I met with a surgeon on Thursday and I have an appointment with A medical oncologist on Tuesday and radiation oncologist on Wednesday.

I've read some things and now I've managed to freak myself out worrying that it may have spread somewhere else in my body. Surgeon didn't mention an MRI but the radiologist who gave me my results said I'd need one so I'm assuming my oncologist will order that?

I just need to get this out because everyone in my family is trying to be supportive but they don't understand my fear. They keep saying that it'll be ok and that Everything will get back to normal once this is treated. Problem is I am terrified, as I said earlier, I'm really worried about it having spread. I had a low grade, slow growing pancreatic tumor when I was 28 and had a whipple Procedure to remove it. But I've always worried that it would pop up somewhere else Partly because of all the CT scans I've had, an it has.

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Jul 18, 2020 11:47AM MinusTwo wrote:

Sandy - people who haven't been there will never understand your fear or where your head is. Since you've been through a Whipple, this should be a much easier.

First - stop reading "Dr. Google". His information is often outdated and can be very incorrect. Try not to get ahead - hard at that is. Once everything is in place for treatment, it will be easier Try to focus elsewhere - binge watch TV, walk, dive into a book, etc.

There are lots of other tests that may or may not be appropriate. If you're HER2+, you'll likely have chemo before surgery. My surgeon wanted a CT before she operated to pinpoint the area. My oncologist wanted an MRI to make sure it was localized. Since you're ER/PR+ they may order genetic tests.

It's good that you're meeting with everyone up front. Every doc will have a different manner & focus. Be sure that you are comfortable with how they present the information and the time they are giving you, or get a second opinion with someone who may be a better fit.


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jul 18, 2020 12:57PM SandyHay wrote:

MinisTwo, Thanks for the reply. I‘m glad that there is someone out there who can understand my fear. The surgeon ordered genetic and said it takes up to 14 days to get my results.


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Jul 18, 2020 01:39PM MountainMia wrote:

SandyHay, sorry you are going through this. I just wanted to add, it's also very possible your oncologist WON'T order an MRI. I did not have one, and I'm not unusual.

Wishing you the best.


The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Jul 18, 2020 01:39PM MinusTwo wrote:

Hang in there girl. And let us know how your appointments go next week.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jul 18, 2020 02:45PM - edited Jul 18, 2020 02:49PM by kathabus

I am stage IB and I was told that it wasn't protocol to order a Pet or even a CT scan with that stage. So depending on your diagnosis, you may need to ask your oncologist for the further scans.


I wanted the piece of mind before I started radiation, mostly because I had a positive lymph node. I just wanted to make sure. My oncologist ordered a pet scan per my request...she was happy to do it...but it was denied by insurance..so we instead did a bone scan and a ct scan. Absolutely glad I got that peace of mind.

Now with this being said...it can be stressful going down some rabbit holes. For example, I had a spot show up near my spine that I had to get a biopsy on. It was negative, but that was a very stressful time. Ultimately, I would have done it again though :)


EDIT—If you're talking about a breast MRI...that for sure was protocol. My BS ordered that. Pretty quickly, actually

43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/24/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/15/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/21/2020 Prophylactic ovary removal Hormonal Therapy 8/21/2020 Femara (letrozole)
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Jul 18, 2020 05:03PM AliceBastable wrote:

I also had a breast MRI. It had nothing to do with determining if the cancer had spread, but was to more accurately pinpoint the location and size of the tumor prior to surgery.

I did have a bone scan (not dexa) and CT after surgery, but it was because I had another, unrelated cancer at the same time and my MO wanted to make sure there weren't any other surprises. If I had just had breast cancer, I wouldn't have had those tests.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jul 18, 2020 05:49PM - edited Jul 18, 2020 05:53PM by SandyHay

Ladies, Thank you allso much. I was under the impression that they would check to see if it was anywhere else. How do they know if they don't test? I'm going to ask for something, a pet scan, bone scan or CT scan. Hopefully I can get one. I just need that piece of mind.

I m guessing that someone will request a breast MRI. Is that usually before surgery or after?

the surgeon did say something about having a radiologist place something in my breast before surgery that would let the surgeon locate the tumor and lymph nodes during the surgery but that was all he mentioned.

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Jul 18, 2020 06:11PM mac5 wrote:

SandyHay...a Breast MRI is the most advanced and definitive Test available for Breast Cancer. Then you might have a Breast Biopsy to determine what it is. Then depending on those results you may have a CT Scan or a Bone Scan.

The Bone Scan would show areas with a lot of growth activity in any specific area of the bone. The CT Scan would show any possible areas of concern for other possible tumors. A PET Scan is often not approved by Insurance because the CT Scan an Bone Scan would tell the same thing.

Your fear is basically a fear of the unknown and is highly normal. And as some have said, unless you’ve been there it’s hard to understand.

But there are so many different things that must be tested and investigated before your Care Team can give you the best options for you. And believe me, it will be tailor made just for you. Even down to them knowing the genetic code for your particular tumor.

Now is the time for you to write down questions you want answers for. After you have details then you decide how much you want to know. Then search.

But don’t rob yourself of sound sleep right now.

Wasn’t it Hagrid who said “Whatever is coming will come, and we will meet it when it comes.”

Hugs and best wishes!

Dx 7/20/2010, DCIS/IDC, Left, 2cm, Stage IIIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Dx 9/5/2019, ILC/IDC, Both breasts, 6cm+, Stage IV, metastasized to lungs, Grade 1, 1/1 nodes, ER+/PR+, HER2- Chemotherapy 11/6/2019 CMF Radiation Therapy 6/5/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jul 18, 2020 06:27PM SandyHay wrote:

mac5 thank you for all of the information, It is very much appreciated. Everyone is so kind here and that puts me at ease a little.

Great tip, I do need to write down my questions. I had a hard time remembering what I wanted to ask the surgeon.

I’m going to assume that my oncologist will give me more info about my treatment plan and order more tests. Surgeon just ordered genetic test and said this is what you’ve got and these 2 options are what you choose, lumpectomy with radiation and meds for years or single mastectomy and meds for years.


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Jul 18, 2020 09:45PM MinusTwo wrote:

Sandy - don't 'assume'. Write down all your thoughts & work that into a list of questions before your appointment. Just remember, put the most important questions at the top. Sometimes the docs don't have unlimited time to talk about all our fears. Also check about a 'nurse navigator'. If you get a good one, they are sooooo helpful.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jul 18, 2020 10:02PM AngieB92 wrote:

Sandy - we have all been where you are now and it will get better!

The general surgeon that did my biopsy would not have done an MRI but when I changed facilities, the new one had me do an MRI just to check the spot and look for any other cancer in my breast.

I was like you - I was scared it was spreading every day but my breast surgeon and oncologist assured me that any activity I wanted to do would not cause it to spread.

Once you get a treatment plan you will feel more on control.

Please keep us posted

Dx 8/8/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 9/17/2019 Perjeta (pertuzumab) Targeted Therapy 9/17/2019 Herceptin (trastuzumab) Surgery 3/3/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 4/10/2020 Kadcyla (T-DM1, ado-trastuzumab)
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Jul 18, 2020 10:41PM robinorbit wrote:

Hi Sandy,


I think the only reason my surgeon ordered an MRI was to measure the DCIS found in my biopsy because unlike my IDC, the DCIS did not show on mammogram or ultrasound. So not sure it’s standard

Surgery 8/20/2020 Dx 9/3/2020, DCIS, Left, <1cm, Stage 0, Grade 2 Dx 9/3/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy Whole-breast: Breast
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Jul 18, 2020 11:04PM Beesie wrote:

Robin, I agree. An MRI is not standard. Some surgeons like to do them before operating, while others don't. My surgeon does them and I was glad about that - based on his experience he finds them useful - but the research doesn't actually support it:

Meta-analysis of pre-operative magnetic resonance imaging (MRI) and surgical treatment for breast cancer
"Our study-level pooled analysis, based on 19 studies that had a control group in the design did not find any evidence that pre-operative MRI was associated improved surgical outcomes....

...The increased odds of receiving mastectomy as BC treatment attributed to MRI can only benefit patients if it translates into a decrease in local recurrence rates. However, the evidence clearly shows that pre-operative MRI does not reduce the risk of BC recurrence. Individual patient data meta-analysis has shown that 8-year local recurrence-free survival did not significantly differ between patients who had MRI and those who did not have MRI (P=0.87), and the associated multivariable models found no effect from MRI on local recurrence-free survival: hazard ratio for MRI (versus no MRI) was 0.88 (P=0.65), whereas age, margin status, and tumor grade were significantly associated with local recurrence-free survival in that meta-analysis. A recent study with long follow-up similarly found no significant effect from pre-operative MRI: 15-year local failure rates were reported as 8% for patients with and 8% for patients without MRI (P=0.59). The secondary analyses we report considered surgical outcomes examined in only some of the studies, including re-excision rates, rates of positive margins or incomplete excision, and re-operation rates; we did not find statistical evidence of a beneficial effect from MRI on any of these end-points in the overall or the stratified analyses."

As for PET and CT scans, as mentioned earlier, they are not protocol for Stage I breast cancer. Some MOs order them anyway, but most do not.

Sandy, see what the MO suggests in terms of testing and if there is something else you want because of your past health history, ask about it, explain why you want the test, and see what the MO says.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 19, 2020 05:48AM edj3 wrote:

Chiming in to say I requested the breast MRI because I have very dense breasts and wanted to make absolutely sure nothing else was lurking in either breast. That MRI was not routine so you absolutely may need to request it and it's not a sign that your care team is sub-par if they don't automatically do them.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 19, 2020 07:50AM MountainMia wrote:

edj and Bessie, right. My cancer center is highly ranked. When I asked about MRI, the nurse navigator shook her head and said, "We don't do them here."

Sandy, also you mentioned the choices being between lumpectomy with radiation, or mastectomy, either being followed by years of meds. Just to reassure you, there again there is no statistical difference in outcomes. You won't be at less risk if you choose mastectomy than lumpectomy. So while there are other substantial differences between the two, you can breathe easily about that one.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Jul 19, 2020 11:44AM Salamandra wrote:

My surgical oncologist ordered an MRI. I remember having the impression that it was linked to my family history of breast cancer and relative youth, and that it wasn't necessarily standard. In my case it confirmed no other areas of concern and we went ahead with the planned lumpectomy.

I don't think they do do body scanning unless they have reason to think it might have spread, like positive lymph nodes or higher stage cancer. They could still do that after your initial surgery, if it's indicated. It doesn't have to be right away.

Your tumor sounds a lot like mine. In my case, things really did start going back to normal after surgery and radiation (and some trial and error on hormonal drugs). Of course I can't speak to long term outcomes yet, but I'll just say that it really is possible that your friends/family are right and your anxious brain is wrong, but the only thing that will tell is time.

This is anxiety producing under the best of circumstances, and probably even more so in your case with your history of pancreatic cancer. My cancer center has a mental health support team and meeting with a psychiatrist and getting some medical support really helped me, especially at the beginning of all of this. Anxiety is a real problem that deserves to be treated and cared for. Hopefully your final staging after surgery will relieve your mind, but even more so if it requires more follow up and investigation, being in a better place anxiety-wise/having appropriate support will only help you with that.

For me, getting the cancer diagnosis felt so unlucky that my head/heart/belly couldn't quite believe I'd actually have luck for anything else - like to be in the relatively lucky position of having truly treatable optimistic prognosis cancer. Like - I actually paid for a burial plot next to my family's. (Figured I'd need it one day eventually...). But it turned out I could be unlucky enough to get cancer in my thirties but lucky enough that it was a treatable one. It is not only possible, it was actually statistically likely. But the brain isn't always on board for that stuff, and that's why the mental health support was so helpful.

Heart

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 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Jul 30, 2020 10:44PM msphil wrote:

sweetie we know your fear been there but once treatment plan in place things will ease up some. I was diagnosed at 42 while planningnour 2nd weddings i prayed for this man after waiting for right one Thank God he was with me thru it all. I was so scared i wouldnt make it But i had my cry then i decided to fight the good fight with Positive thoughts that i Would indeed get thru this. Hope and family also was important for me. Hang in there i am now a 26yr Survivor Praise God and am married also. msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast then we got married then 7 wks rads and 5yrs on Tamoxifen.

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Sep 15, 2020 08:57AM SandyHay wrote:

Just wanted to update. Surgery went ok, they removed 3 lymph nodes and found cancer in 1 so I will begin Chemo on Sep 29th. I am terrified of Chemotherapy because of a negative consequence from it in my family, everything happening at the moment and Flu season coming up, but I know it must be done. I have been suffering from severe anxiety so I haven't been on in a while, but I want to thank you all for your messages.

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Sep 17, 2020 05:42AM Valentine214 wrote:

SandyHay

I too was terrified of chemo. My knees actually buckled walking to the infusion suite the 1st time. Although it wasn't easy, it was definitely not as bad as I had imagined. You are stronger than you know.

Sending you love, light and strength for your journey.

Stacy Dx 9/19/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Chemotherapy 10/17/2017 AC + T (Taxol) Surgery 3/22/2018 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 4/23/2018 3DCRT: Breast Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Aromasin (exemestane)
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Sep 17, 2020 08:59AM SandyHay wrote:

valentine

Thank you, its a nerve wracking time. i know there are so many strong women out there like yourself who have been on this journey before me, and I am so thankful for your support

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