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Topic: Terrified continued

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Oct 16, 2019 03:02PM - edited Oct 16, 2019 07:27PM by Slg1324

Slg1324 wrote:

Here's my update continued from the " not Diagnosed but worried"section

I did get the call yesterday - the doc said they found a small cancer (1/3 inch biopsy but 1/2 inch on mammogram)that doesn't seem very aggressive.He did say it was a hormone sensitive cancer(something about a grade 2) and that it's not good news but not awful . They are still waiting on the HER2 result and that should be no later than Friday.
Treatment prediction so far would be lumpectomy, radiation and hormone therapy but it also depends on HER2 result.sorry about any ignorant wording here ; obviously very new at this. I'm very overwhelmed and not sure how well and when I can reply on this board- I just wanted to update. I will do more updating if I can and may have questions .any words of wisdom and guwelcome Thank you for all the loving support always and sending love and support to everyone !❤️

I am attaching my original post here from “not diagnosed but worried section :

“Posted on: Sep 29, 2019 01:19PM - edited a few seconds ago by Slg1324

Joined: Sep 2019Posts: 37Latest activity: Oct 16, 2019

Slg1324 wrote:

I admire and appreciate all people's bravery and support of each other in this online community.

Im a 52 years old wife and mother (of 2 two wonderful now young ladies) For various reasons I have not had routine mammograms

Some of the reasons include, financial, a life long struggle with sometimes emotionally and physically crippling depression and anxiety.I have quite a bit guilt about not having done these mammograms over the years and am in need of some support not judgement.

I'm pretty terrified and depressed right now. I have a history of cancer in my family but no breast or ovarian cancer that I know of.recently I've discovered a mass , heaviness, thickness and pressure in my left breast at about 3 o'clock. It feels very different than my right breast.I can really tell how big it is .What first made me notice was i felt something when I sleep on my left side . I am emailing(it's Sunday so medical offices Are closed )my doctor to get the ball rolling on what tests and evaluating need to be done . The anxiety about being evaluated is sky high.

I work out of town and it's very stressful traveling everyday but there are so many bills to pay.I'm trying to manage the household with my husband and college freshman daughter ( who still has a lot of needs) .

I feel like I can't even function and tomorrow starts a brand new work week . I can't sleep .I'm in a very bad way. I'm thinking the worst. If this is cancer I've really messed up because I may not have caught it early.

Any words of wisdom is greatly appreciated .Anyone gone through or going through something similar?”

Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 7, 2019 02:42PM rlmessy wrote:

Slg,

I totally get the when to share dilemma. I am kind of like...how do I start that conversation? Most of my family know and my inner circle of friends but even then alot of them are asking why I am not doing something about it. Like right now, today! Like I am capable of performing surgery, dispensing chemo and performing miracles.

Stay strong...in the end we can do this!! We may not be a pretty sight everyday but the beauty of authenticity is that we don't have to be.

My DX appears below but I am also a caregiver to my awesome Mom, a 13 year (2006) BC Survivor, IIIa IDC, ER/PR+, HER2+, R MX, Lymphedema R Arm Dx 10/10/2019, LCIS/DCIS/IDC: Papillary, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2+ (FISH) Surgery 12/18/2019 Mastectomy: Left, Right
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Nov 8, 2019 07:30AM edwards750 wrote:

Sig - don’t beat yourself up too much over not having routine mammograms. Most of us have and we still got BC. That’s not to say you shouldn’t have them because you should but it certainly isn’t a guarantee you’ll dodge BC.

Try and take a deep breath. We can all relate how anxious you are. We’ve been there, done that. There is no magic formula on how not to worry just don’t let it consume you if you can.

Keep the faith and keep us posted.

Diane

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Nov 8, 2019 11:09AM Slg1324 wrote:

thank you , Diane ! Good words ❤️

Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 8, 2019 04:19PM MassGirl55 wrote:

Slg1324 - You popped into my brain earlier today so I thought I'd jump on and see how you're doing. Eleven days until surgery...the time will go by quickly. Think positive thoughts!


Dx 9/26/2019, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 10/30/2019 Surgery
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Nov 8, 2019 05:46PM Slg1324 wrote:

thank you MassGirl!❤️

Hope things are going okay for you after your surgery and starting your treatment plan

Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 8, 2019 05:59PM Slg1324 wrote:

just had second biopsy today for another spot found on MRI in same breast (left ) as ILC . The doc said a few times that he thinks it’s a “nothing” Much to my surprise it was a mammogram guided biopsy-that sucked!!! I thought it was going to be another ultrasound guided biopsy .TheBiopsy was followed by another MRI to make sure clip was in the right place -wasn’t expecting the MRI either ! Part of me thinks i should be really scared now and another part of me KNOWS I’m being well taken care of .. It’s been a long week!!!! Here for Waiting results again :/

Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 9, 2019 05:33AM claireinaz wrote:

Hi there,

Just chiming in about mammograms. I had 5 "clear" mammos that didn't reveal the ILC I had. ILC tends to hide from scans because it grows "flat"--and doesn't manifest as a more common IDC tumor would. So I felt duped that I had been given the all clear when in fact I probably had b.c. for at least a few years.

I too suffer from generalized anxiety disorder, so I get it. Try not to beat yourself up over not getting mammos-it might not have revealed your problem anyway. Sometimes this entire experience is so disheartening, but if your pathology reveals your are ER/PR+, then you have more treatment options, and ILC tends to grow a bit more slowly-so take heart in that.

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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Nov 9, 2019 07:18AM rlmessy wrote:

Hang in there Slg!! Sounds like you did what you needed to do and got the biopsy done even though it was not the way you expected. The biopsy is the only way the docs can tell what it is so now the waiting is for the results not to schedule something else.

It was a huge relief to get the imaging done and to have some confidence that there is nothing else lurking in there.

I freaked out too when they said they were going to do a mammogram after the biopsy...I was like no way! But they were like...dont worry you will be numb. I swear I feel like even the kindest words sometimes are just so dumb.

Hold tight, we are all waiting with you!!

My DX appears below but I am also a caregiver to my awesome Mom, a 13 year (2006) BC Survivor, IIIa IDC, ER/PR+, HER2+, R MX, Lymphedema R Arm Dx 10/10/2019, LCIS/DCIS/IDC: Papillary, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2+ (FISH) Surgery 12/18/2019 Mastectomy: Left, Right
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Nov 9, 2019 10:12AM Slg1324 wrote:

hi Claire -

Thank you for sharing about your mammograms being clear for 5 years - I feel such compassion on how you felt duped.💜At the same time I feel encouraged and inspired by you and your experiences, thank you !The anxiety is so difficult, isn’t it ? I’m learning more and more about ILC - it is scary how sneaky it can be but yes possibly tends to move more slower .

Hi Rlm Thank you for listening once again to my venting! I’m starting to understand how unpredictable things can be in this process so far .so nice to have people on here to talk to with similar experiences and gain some strength 💕grateful and here with you while while you wait too.
Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 10, 2019 04:17AM arizonaboundgal wrote:

Aw, Sig. That sucks that you needed another biopsy and now more waiting! Fingers crossed that it's nothing at all.

Enjoy every sandwich--Warren Zevon
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Nov 10, 2019 07:59AM Slg1324 wrote:

thank you Arizona! 💕

Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 10, 2019 08:06PM swg wrote:

Sorry, I'm only just seeing this now but yes, your story is very much like mine. We're the same age, though my cancer was diagnosed 2 yrs ago (this month is the 2 yr anniversary of being cancer free!)

I have the same tumor characteristics, and yeah, bc sucks but if you're gonna have it, Grade 2 is good cuz slow-growing, and hormone-positive tends to have good outcomes..less recurrence..easy to treat etc.

I, too, never had regular mammograms. I only went it because I had a dimple on my breast, and fortunately, it was caught early. I had 2 tumors, though, and 1 didn't get picked up on the mammogram and ultrasound..it was shown on a breast MRI. I went through a unilateral mastectomy with reconstruction. Because I didn't have any genes in the genetic test and my oncotype was low (test that predicts recurrence risk), I did not go on Tamoxifen..I decided the risk of other cancers wasn't worth the slight risk in recurrence. I think I figured I'd go from 8 pct risk to 6, or something like that. I don't regret it.

I changed my diet and started exercising more. My last physical looked good..only slightly high cholesterol.

I was very nervous and anxious, too, having struggled with an anxiety disorder, myself. But it's amazing what we can go through--things we never thought we could. BC showed me that. And it's also made me realize how short life is, so I've been spending a lot more time engaged in creative pursuits I had put off and put off. I've completed a short film that I co-wrote, co-produced and starred in. I'm almost finished writing a play. And also almost finished with a semi-autobiographical novel. Am working on a comedy series with a friend. And am rescuing cats! Just keeping myself busy. I don't think too much about cancer..except when I look at my one foob and how different it looks from my natural breast. Or when I felt this small lump under my left arm that I now have to go get checked out, but it's funny. I don't live my life being scared of recurrence. I just do the best I can to take care of myself. The rest is out of my hands. I feel at peace.

The best thing you can do now is make sure you have the best medical team for you, possible, and take the best care of yourself you can.

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Nov 11, 2019 07:15AM Slg1324 wrote:

hi swg!

Thank you for sharing your incredible inspiring story! 💜it means so much to me and gives me hope .I’m looking forward to a time like you when I don’t have to have cancer on my mind so much and the anxiety isn’t wildly in control.

So far our stories are similar- I am still in the DX phase of this and I haven’t had surgery yet. The step I am in currently is waiting for biopsy results on a second spot found through MRI on left breast (same side as the cancer that was already found). The doctor says he expects it to be benign- so I keep replaying that in my head - of course at times it gets hard to not let the negative thoughts come in .the results should be in tomorrow or Wednesday.i hope the check up for the lump under your arm goes well

If you feel like it let me know how you changed your diet . It’s funny because over the last 3 or 4 years I’ve really started slowly but steadily improve my health by exercising regularly and eating better but I definitely could work on bringing out the more artistic creative side of myself that I haven’t really been in touch with for years . I’ve been too busy with life demands :( like I said your story and others are inspiring and encouraging. 💕💕💕💕
Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 11, 2019 11:46PM WorryThePooh wrote:

Slg I'm so sorry to hear you are anxiously waiting for results yet again. Hope all will be OK!

Swg thanks for sharing your story, congrats on being 2 years cancer free!

I've been away on a trip and it didn't turn out to be as relaxing as I would have hoped as a) I was sick with a dreadful cough virus and b)driving back we came really close to very bad bushfires, which have now killed three people. :(

Now I'm anxiously waiting to have my first yearly mammogram since diagnosis Nov18, in a couple of days time, trying to stay calm but not really succeeding.

Dx 11/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Surgery 11/21/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 12/13/2018 Whole-breast Hormonal Therapy 2/28/2019 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 12, 2019 07:04AM claireinaz wrote:

Hi slg1234,

I also had very dense breasts. And didn't know I had them (or that they even further hide problems) until I was dx, because my mammos never reported them, and anyway I hadn't yet found out about the added problems that those of us with dense breasts face when it comes to b.c.

That's why I had the BMX-didn't want to give little c any place to hide in the future, since it hid from me in the past.

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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Nov 12, 2019 08:43AM Slg1324 wrote:

hi Worry

Thank you ! I’m really hoping for the clear for you and your upcoming mamo and me and my bio results 💜💜💜So sorry your trip wasn’t very relaxing with the virus and those awful brush fires 😞I hope you are feeling better .

Hi Claire

I really hear what you are saying here with the dense breasts and deciding to have BMX- it probably wasn’t an easy decision. It looks as though you had it sometime after a lumpectomy. If you don’t mind me asking did your insurance(if you had it) cover the BMX after the lumpectomy?


Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 12, 2019 02:58PM Slg1324 wrote:

wow! So the biopsy I just had on Friday is inconclusive 😞The doctor isn’t even sure that they got the right spot .I have to go back on Monday the 18th for an MRi guided biopsy when my supposed lumpectomy is happening the next day. I’m so confused lost and very upset!

Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 12, 2019 08:00PM WorryThePooh wrote:

Oh Sig! I am really sorry you are having such a confusing and difficult time, I hope that the guided biopsy will make everything clear. xxx

Dx 11/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Surgery 11/21/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 12/13/2018 Whole-breast Hormonal Therapy 2/28/2019 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 12, 2019 08:24PM Slg1324 wrote:

thank you Worry💕 when is your mammogram?

Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 12, 2019 11:42PM WorryThePooh wrote:

Tomorrow morning! Australian Eastern Standard time 10am

Nerdy

Dx 11/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Surgery 11/21/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 12/13/2018 Whole-breast Hormonal Therapy 2/28/2019 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 13, 2019 04:03AM rlmessy wrote:

Oh no Slg! I am so sorry!! Sending a big virtual hug.

My DX appears below but I am also a caregiver to my awesome Mom, a 13 year (2006) BC Survivor, IIIa IDC, ER/PR+, HER2+, R MX, Lymphedema R Arm Dx 10/10/2019, LCIS/DCIS/IDC: Papillary, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2+ (FISH) Surgery 12/18/2019 Mastectomy: Left, Right
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Nov 13, 2019 06:03AM - edited Nov 13, 2019 06:06AM by claireinaz

Hi to SLG,

In answer to your insurance question-yes, they did. I can't tell where you are located, but federal law requires insurance companies to pay for BMXs, regardless, I think, of what surgeries have been done previously or what treatment has been done.

You're being dragged through the wringer of testing, but it sounds like your medical team is being thorough about wanting to get a completely accurate dx. It's agonizing to wait and go through more testing, but in the end it's worth it to protect you from overtreatment or mistreatment--if you can think of it like that. Big, virtual, survivor hug to you!


Claire

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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Nov 13, 2019 06:12AM - edited Nov 13, 2019 06:16AM by Slg1324

Thinking of you today ,Worry with the mammo💗 🤞🏽

Thank you Rlm!Virtual hug back at you ! ❤️

Claire- thanks for the info ! At this point not sure what kind of surgery I'll be having or when .im trying to stay calm and positive THANK YOU for pointing out that my team is trying to be thorough etc , I need those reminders .hope all is well with you! Big hug 💕

Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 13, 2019 09:07AM arizonaboundgal wrote:

Geez, Sig. What a pita! I'm sorry. Hurry up and wait, right? Here's to hoping (once again) that it's absolutely nothing. Hang tight.

Enjoy every sandwich--Warren Zevon
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Nov 13, 2019 10:57AM Slg1324 wrote:

thank you Arizona!Your caring wordsmean so much ! 🤗💗here’s to more waiting, oh boy !!

Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 13, 2019 01:10PM San1975 wrote:

Sorry to hear that Sig! How frustrating! I would assume they would post pone the lumpectomy now? I'm so sorry your going through all of this! {{hugs}}

Dx 10/16/2019, LCIS/ILC, Right, 5cm, ER+/PR+, HER2- Surgery 12/30/2019 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Nipple tattoo, Silicone implant, Tissue expander placement
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Nov 13, 2019 02:54PM Slg1324 wrote:

thank you San, it is very frustrating esp since they are telling me that they aren’t sure if they got the right spot .😑 I hope you are hanging in there okay as I know it will be awhile before your surgery.calm loving thoughts your way 💜💜

Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 13, 2019 05:21PM Slg1324 wrote:

update :

Since I have a biopsy on November 18 - my surgery scheduled on November 19th has been rescheduled for December 5.on one hand it’s pretty scary to have to wait any longer to get the cancer OUT on the other hand I’m grateful the surgery won’t be on the week of my daughter’s birthday

Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left
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Nov 14, 2019 12:34AM WorryThePooh wrote:

Oh gosh Sig, that is a bother having the surgery delayed, but I'm glad you are pleased about it not being that week of her birthday. You'll certainly have a story to tell your grandchildren one day when you're teaching them that patience is a virtue!

Mammo went well, got the all clear today!

ThumbsUp

Dx 11/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Surgery 11/21/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 12/13/2018 Whole-breast Hormonal Therapy 2/28/2019 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 14, 2019 06:03AM Slg1324 wrote:

yay Worry!!!! 🤗👏🏼👏🏼👏🏼So happy to hear !!❤️❤️❤️

Oh yes , patience is definitely a virtue!

Dx 10/15/2019, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH) Hormonal Therapy Radiation Therapy Surgery 12/5/2019 Lumpectomy: Left

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