Join Us

We are 217,552 members in 84 forums discussing 160,624 topics.

Help with Abbreviations

Topic: calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jan 31, 2012 08:59AM - edited Apr 24, 2014 05:29AM by dancetrancer

dancetrancer wrote:

I decided to start this thread to help others who may end up in this "grey" area and are struggling to make a decision about chemo/Herceptin or not.  Current national guidelines do not recommend treatment for our stage.  Treatment is only considered for 6 mm and up HER2+ sisters.  HOWEVER, some docs do still treat t1A sisters, which makes for a very confusing and stressful decision making process for t1A gals.  I thought we could run an ongoing list of sisters, sharing our decision making process, recommendations, etc.  I will be keeping an informal poll and will update it as we go along.  So far, here is what I found:

  • 6 had no treatment (no Herceptin; some had chemo without Herceptin) and recurred with METS (one dx 2004, one 2007, one 2009, two 2010; one 2012)
  • 7 had no treatment with dx ranging from 2007 to 2012.  One has had a local recurrence 3 years after diagnosis. All others have had no recurrence yet. 
  • 29 have had treatment or are currently undergoing tx; 1 had a local recurrence after tx (ranging 2008 to 2012) 

This is completely unscientific, I know, as there likely is bias b/c women who are more aggressive about treatment may be more likely to frequent these boards, but, I still find the data helpful.  

Of the treated group:
12 had taxol plus Herceptin
12 had TCH
1 refused chemo but doc agreed to Herceptin only

1 had chemo only recommended, no Herceptin

2 had AC-TH

1 had  FECX4 with Herceptin 

 If you reply, please share the size of your IDC, year you were diagnosed, your age (if you are ok with that), Grade of IDC, ER/PR status, recommendations you received from MD's, decision you made, and treatment (if tx'd) you had.  Also note if you have had a recurrence or not. Oh and also if you don't mind sharing, tell us if you are in the USA or another country.  I am interested in seeing if there is a trend for treatment or no treatment based upon country.  

Thank you, I will update the numbers as we move along.   

P.S.  Edited to add an important point made by Beesie in this thread, so that newbies don't freak out when they see whatever numbers happen to be above:   "those who have problems tend to stay on the board longer or return to the board or search out the board when they do have problems. For example, judging by the women here, one would think that the recurrence rate and rate of mets (generally, not just HER2+) is much higher than it actually is. There are thousands of women who've popped in here for a short while, completed their treatment and then, because they don't have a recurrence, are never seen again. It's generally only the women who have a recurrence who return. It makes sense, but it means that the numbers will be skewed to those who have a recurrence vs. those who've happily moved on with their lives and have no further problems." 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
Log in to post a reply

Page 26 of 26 (778 results)

Posts 751 - 778 (778 total)

Log in to post a reply

Jun 20, 2018 06:15AM - edited Jun 20, 2018 08:40AM by chocomousse

I'm past the 2 year mark which is when most recurrences occur according to my doctor. I was also told that the recurrence risk drops significantly after that but I won't be relatively home free until the 5 year mark. I did not receive chemo, radiation, herceptin or hormone therapy.


Dx 4/23/2015, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR+ Surgery 8/17/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 8/18/2015, IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC)
Log in to post a reply

Jun 20, 2018 06:35AM Cwhitney wrote:

choccomouse, I hit my two year mark in May and had a similar diagnosis. Congrats to you and thanks for checking in!

Dx 5/6/2016, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/16 nodes, ER+/PR+, HER2+ (FISH) Surgery 5/17/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement Targeted Therapy 7/10/2016 Herceptin (trastuzumab) Chemotherapy 7/10/2016 Taxotere (docetaxel)
Log in to post a reply

Jun 22, 2018 07:26PM keepmovin wrote:

New to all of this. Waiting for surgery is very stressful. Tumor is 1 cm, +++, grade 3. I don't know lymph node status until after surgery. Docs have said surgery, radiation, chemo and Herceptin. With HER2+ is Herceptin and chemo the commonly recommended treatment? Any chance I'll be able to avoid those?

Dx 5/16/2018, IDC, Right, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 8/16/2018 Herceptin (trastuzumab) Chemotherapy 8/17/2018 Taxol (paclitaxel) Radiation Therapy 12/4/2018 Whole-breast: Breast
Log in to post a reply

Jun 22, 2018 09:32PM Blownaway wrote:

keep movin - TCH will most likely be your treatment. Join us on the Triple Positive thread. There are many very knowledgeable people there to help you through the journey

Dx 3/31/2014, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 5/12/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 6/2/2014 Lumpectomy: Left Chemotherapy 7/2/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/2/2014 Herceptin (trastuzumab) Radiation Therapy 10/6/2014 3DCRT: Breast Hormonal Therapy 1/9/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Breast
Log in to post a reply

Aug 5, 2018 07:49AM EllieMae411 wrote:

This is awesome. I sure wish researchers would do this - and more.

Thank you for this unscientific tally, dancetracer.

Dx 6/28/2018, DCIS, Left, 5cm, Stage 0, Grade 3, ER+/PR+ Surgery 7/9/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right Dx 7/24/2018, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy Herceptin (trastuzumab)
Log in to post a reply

Aug 5, 2018 05:59PM dancetrancer wrote:

You are so welcome - glad you found the thread helpful!

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
Log in to post a reply

Aug 7, 2018 07:34PM chocomousse wrote:

Had an abnormal mammo last week so it was followed up with an ultrasound. Got the results back on Monday and it was determined that the nodules in the images were just fluid filled cysts, thank God. 8/18 will be my 3rd year NED.

Dx 4/23/2015, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR+ Surgery 8/17/2015 Lymph node removal: Sentinel; Mastectomy: Right Dx 8/18/2015, IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC)
Log in to post a reply

Aug 7, 2018 09:04PM JoniB wrote:

Choccomousse - happy you received good news!

Two time breast cancer survivor. Recurrence after 8 years. First time 3 mm ER-, PR-, HER2+. Recurrence 4mm - triple positive.
Log in to post a reply

Aug 8, 2018 06:41AM dancetrancer wrote:

Oh thank goodness chocomousse! I have had so many scares like that - all, thankfully, have turned out to be benign fatty cysts. Each time it reminds me to live each day as fully as possible. Carpe diem!

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
Log in to post a reply

Aug 20, 2018 09:55PM - edited Aug 20, 2018 09:56PM by Rosamond

@Blownaway, my case was conferenced, and I also got a 2nd opinion. Herceptin was not recommended, only tamoxifen, as the tumor was over 90% reactive to estrogen. I was recently told the HER2 was not highly amplified

Rosamond, my Calico cat, was a breast cancer survivor for 8 years. >^.^ Dx 6/10/2013, DCIS, 5cm, Grade 2, ER+/PR+ Dx 8/1/2013, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 8/7/2013 Lymph node removal: Right, Sentinel Surgery 8/14/2013 Mastectomy: Right; Reconstruction (right): Silicone implant Hormonal Therapy 9/4/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/3/2014 Reconstruction (left); Reconstruction (right)
Log in to post a reply

Aug 21, 2018 06:55PM Eily333 wrote:

I was told they had to get approval to give me my chemo therapy because my tumour was only 0.6 cm...and it was not usually given if tumour was that small. Received approval and had the following.....

I had 12 weekly TAXOL treatments in combination with getting HERCEPTIN every other week during that 12 weeks.

Once Taxol was complete I am continuing with HERCEPTIN until I have a total of 17 HERCEPTIN in all.

Began FEMARA for 5 years for ER+/PR+ once I completed Taxol.

I chose to have a Bilateral Mastectomy as I know I would be a wreck worrying about recurrence. Still awaiting Genetic Testing.

PS ..I am in Canada.

Dx 11/7/2017, DCIS/IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ (IHC) Surgery 11/28/2017 Lumpectomy; Lymph node removal Surgery 5/29/2018 Prophylactic mastectomy Hormonal Therapy Femara (letrozole) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel)
Log in to post a reply

Sep 23, 2018 04:59PM Justkeepmoving wrote:

hi ladies - introducing myself as I lurk on your thread :)

I had a double mastectomy in May due to my left breast having many areas of DCIS and unable to do a lumpectomy with clean margins. The largest spot (5cm lump) had microinvasion - the board of doctors where I'm being treated is reevaluating the pathology and sending it back to get a different stain because they believe I likely have more micro invasion than that one spot. I'll find out the results at the end of the week but it seems that even if no other spots found they were suggesting AC even with just this pathology.

I'm trying not to get too ahead of myself but this was a lot to take in. I guess once I know the results and I have an oncology score and I know the estimated risk numbers of recurrence then I'll feel better - I just want to make this decision and do it and move on.

Thanks for listening :)

Dx 5/22/2018, DCIS, Left, 5cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR- Dx 6/29/2018, IDC, Left, <1cm, Stage IA, ER+/PR+, HER2+ Surgery 6/29/2018 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
Log in to post a reply

Mar 31, 2019 10:08AM Dejaboo wrote:

I forgot to check in (almost) I just celebrated my 11 year cancerversary on March 7th!

My Her+ was only 1.2mm- very tiny- but bigger then a microinvasion (DCIS was 1.5cm) At the time my Onco recommended Chemo & Herceptin only because she had no guidelines to go by...still 11 years later & it is a grey area. :(

I did not have any treatment (No Chemo No Herceptin) I did have a bilateral mastectomy- my decision

statistics are just a group of numbers looking for an argument Dx 3/7/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2+
Log in to post a reply

Apr 1, 2019 11:36AM dancetrancer wrote:

Congratulations Dejaboo - so great to hear your update!!!! YAHOO on 11 years!!!!!!!!! Keep on keepin' on!!

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
Log in to post a reply

Apr 7, 2019 09:14PM Rosamond wrote:

Congratulations, Dejaboo

Rosamond, my Calico cat, was a breast cancer survivor for 8 years. >^.^ Dx 6/10/2013, DCIS, 5cm, Grade 2, ER+/PR+ Dx 8/1/2013, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ Surgery 8/7/2013 Lymph node removal: Right, Sentinel Surgery 8/14/2013 Mastectomy: Right; Reconstruction (right): Silicone implant Hormonal Therapy 9/4/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/3/2014 Reconstruction (left); Reconstruction (right)
Log in to post a reply

Apr 8, 2019 08:38AM MCBaker wrote:

Here is another club I can join. The descriptive options in the signature are limited. My DCIS was 10+ cm. The pure impossibility of finding everything in something that large, even with an automated process is a decision-maker for me. Treat this thing aggressively, even though they found only 4 mm invasive HER+.

I will have my second Herceptin infusion on the 18th. This is such a relief, because I hated having to go out of town, being knocked out by the benadryl, and the bladder accidents. In town, conscious all the time, half an hour, and fewer side effects.


Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant
Log in to post a reply

Aug 27, 2019 03:40PM rlws wrote:

My treatment has yet to be determined. today I found out my sentinel lymph nodes were negative, thank goodness.

I have 1.2mm IDC, high grade, HER2 +( grade 3). This was found when doing lumpectomy of a small high grade DCIS in one breast. I am pre-menopausal and 50 years old.

I meet with MO, BS and they are taking my case to the Tumor Board, all on Thursday.

To me this is a roller coaster ride never knowing what to expect. My BS seems to think radiation will be the recommendation but wanted to go to the Tumor Board and me go to the MO.

I am grateful to have found this group and to have others in my situation. I feel an immediate connection since this helps me to feel like I am not alone.

Good luck to all and thanks for all the sharing.

Dx 7/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (DUAL) Surgery 8/7/2019 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right)
Log in to post a reply

Aug 28, 2019 07:16AM DogMomRunner wrote:

rlws- I've been on this board since April and never seen this thread. Your diagnosis sounds a lot like mine. Initially the BS and the MO were unsure if it would be surgery (lumpectomy) first or chemo. I have dense breasts so it was hard to be sure of the tumor size. My MO said I would either do the 12 week Taxol with Herceptin or taxotere, Herceptin, carboplatin and perjeta regimen for the 12 weeks. Both possibilities had me doing the Herceptin or the Herceptin/perjeta for up to year after.

I ended up having an MRI to determine size and lymph node involvement - which it why would have tipped it to the TCHP. The MRI said my tumor was 1.4 cm with nothing seen in the lymph nodes. So I had the Taxol and Herceptin. I am finished with the Taxol and will start doing Herceptin just every 3 weeks tomorrow.

Today I go for a radiation consult to see what my course of treatment will be with that. I think most with HER-2 positive will have some sort of chemo, along with surgery and radiation therapy (unless you have a mastectomy instead of lumpectomy).

I am post menopause and 57 years old

You ain't run far enough to say My legs have failed You ain't gone far enough You ain't worked hard enough You ain't run far enough to say It ain't gonna get any better. Nathaniel Rateliff Dx 4/24/2019, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/8 nodes, ER-/PR-, HER2+ (FISH) Surgery 5/17/2019 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 6/6/2019 Herceptin (trastuzumab) Chemotherapy 6/6/2019 Taxol (paclitaxel) Radiation Therapy 9/22/2019 Whole-breast: Breast
Log in to post a reply

Aug 28, 2019 07:27AM rlws wrote:

Thanks for the reply DogMomRunner!

I did have the lumpectomy already. Our situation looks similar except for the menopause and my tumor is smaller.

I think because the invasive tumor was small they are uncertain, but glad to have my BS going to Tumor Board and to see MO as well. It truly is hard to know the 'right' thing to do I feel. In reading through the board so many have had multiple times they have gone through, it does concern me and will talk to MO about that.

I really hope to have a plan soon as it is stressful as you know. I am grateful for this group so I can see how all are being treating around the regions of the US!

I am also a dog mom and runner! I truly miss running right now as I did have oncoplastic surgery with my lumpectomy so limited on activity still.

Good luck to you and your treatment! Prayers coming your way.

Dx 7/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (DUAL) Surgery 8/7/2019 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right)
Log in to post a reply

Aug 28, 2019 01:55PM dancetrancer wrote:

Welcome new ladies! I'm not here very often at all any more, but I am glad you have found this thread and are connecting with each other. I no longer consider myself an expert on this topic but I am here to offer encouragement as you walk through the process. It isn't easy, for sure, but myself and many other long-timers who still pop in now and again should offer you great hope in terms of prognosis.

Heart

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
Log in to post a reply

Aug 28, 2019 02:49PM Dejaboo wrote:

Hi rlws- your DX is similar to mine in 2008. I am 1.2mm- Though my Her2+ IDC was grade 1 (which isnt very common) 45 at DX

I started with a lumpectomy (Only because my PS was not listening to me- I told him from day 1 I wanted a double mastectomy- just my choice)

My IDC was also found during my lumpectomy for DCIS-grade 3

I did go on to have a double mastectomy 6 weeks later so no RADS for me. 11.5 years ago they did not know what to do with me- they still are not sure- since our tumors are so small- yet aggressive.

I did not have Chemo or Herceptin. I hope you have a plan soon. It is a Rollercoaster! I will be interested to see what they recommend

statistics are just a group of numbers looking for an argument Dx 3/7/2008, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR-, HER2+
Log in to post a reply

Aug 28, 2019 03:00PM Pinkpinkturk wrote:

At first stage 0 dcis 2017 . Lumpectomy and only tamoksifen .

I am 39 years old.

Last year stage1a her 2 positive er+/ pr + , grade2 . Negative nodes.

Mastectomy , 4AC + 4TAKSOL with herceptin .

Now aromasine and zoladex

I am worried. I'm tired

Log in to post a reply

Aug 28, 2019 03:38PM CourMatt wrote:

March 8th showed by biopsy, a 3 mm grade 3 and triple positive tumor. We had been watching it for over a year with mammograms every 6 months as it was very small. It was thought to be benign, even on the day of the biopsy. The phone call by the BS was difficult at best. I decided to attack it as aggressively as possible. On March 21, I had a lumpectomy with the path report showing a tumor 9mm in size. Chemo was started on April 29 with 12 weekly taxol and herceptin. I am currently doing radiation for 16 sessions with 2 more left. The herceptin continues until March 2020. Aromatase is planned for 10 years. Time will only show if it was enough. Blessings to all!

Dx 3/8/2019, IDC, Right, <1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/20/2019 Lumpectomy; Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 4/28/2019 Targeted Therapy 4/28/2019 Radiation Therapy Hormonal Therapy
Log in to post a reply

Aug 28, 2019 04:59PM MCBaker wrote:

Dejaboo, mine was tiny, and grade one. We opted for chemo and herceptin. But everyone has a good chance of getting a new BC. I can understand your opting for a double, just to eliminate the possibility of ever having breast cancer again. If I could have met my onco before surgery, he might have talked me into getting a double.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant
Log in to post a reply

Aug 29, 2019 03:38PM rlws wrote:

Saw my MO and BS and my case went to tumor Board. I will be doing radiation and take tamoksofen for 5 years. Decision was mainly because of the smallness of my invasive tumor.

Glad to know the plan. Meeting with Rad Oncologist to set me up Thursday next week. Feeling grateful to just have a plan!

Dx 7/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (DUAL) Surgery 8/7/2019 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right)
Log in to post a reply

Aug 31, 2019 09:18AM Pinkpinkturk wrote:

How are you now lady ?

Log in to post a reply

Sep 30, 2019 02:53PM Pinkpinkturk wrote:

My tumor was 6 mm IDC and 1,5 cm DCIS

ER 30 % PR 40 %

HER 2 POSITIVE

Ki67 30 %

Mastectomy

4AC AND 4 TCHP

AROMASİN

ZOLADEX

I AM 39 YEARS OLD .

I AM AFRAID OF RECURENCE

I HATE ...


Log in to post a reply

Oct 3, 2019 01:12PM Pinkpinkturk wrote:

Hi ,Blownaway

Same diagnosis.

How are you now ?


Page 26 of 26 (778 results)