Jan 31, 2012 09:01AM dancetrancer wrote:
I have a lengthy, complicated story about my decision making process here:
Testing, treatment, side effects, and more.
Posted on: Jan 31, 2012 08:59AM - edited Apr 24, 2014 05:29AM by dancetrancer
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:
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."
Posts 1 - 30 (778 total)
Jan 31, 2012 09:01AM dancetrancer wrote:
I have a lengthy, complicated story about my decision making process here:
Jan 31, 2012 12:44PM - edited Jan 31, 2012 01:00PM by mommichelle
Add me. I was diagnosed with a 4mm her2+ tumor. Grade 2, 0/2 nodes. Biopsy first showed DCIS. It was widespread so I knew I wanted the mastectomy. On original pathology, the invasive component showed up as 0.7mm. It wasn't until the second opinion that they said they thought it was 4mm (almost six times the size). Three opinions 1. no chemo, 2. chemo and herceptin, 3. no chemo. I went with the chemo/herceptin option. That doctor talked about treating the biology of the tumor and not the size. I also knew that I did not want to look back and say what if. I had a right mastectomy on June 18th, 2010 and just had a PLMX with immediate DIEP/tram recon on January 13th, 2012. I was looking over my shoulder, wishing I had had the other removed from the get go. It is very interesting to read over the data. I was getting myself all freaked out again until I started realizing some of the stats are for people who did not receive treatment. My onco and lifemath put my risk at about 3%. I guess that is more overall, still being alive, not necessarily without reoccurance. Definitely an interesting thread, but scary too.
Jan 31, 2012 12:56PM - edited Jan 31, 2012 06:09PM by Dejaboo
Thanks for starting this Thread Dancetrancer.
I think it will help other women down the road
Perimenopause at DX
1.5 cm DCIS, 1.2 mm IDC. Her 2+, ER+ PR-, Grade 1.
Lumpectomy (because BS didnt believe I was serious about a BLM)
BLM, No Rads, No Chemo, No Tamox
I had a Hysterectomy because of Hemoraging, I kept my Ovaries
Jan 31, 2012 01:00PM - edited Jan 31, 2012 01:01PM by dancetrancer
Hi Mommichelle! Thank you for sharing your story!!! I think this thread will be very helpful for those who follow in our footsteps. (Ah, just saw your post dejaboo, thanks!)
I had actually found you and recorded your data (how does it feel to be stalked? LOL!!!) Any chance you are willing to share your age at diagnosis? If not, no problem, or PM me if that's better...trying to gather age data, too, b/c of course that makes a big difference in recommendations and potential for recurrence).
I hear you on the BMX. I was pretty stunned to find out I had cancer on my supposed prophylactic side (it was a very small focus, but glad I did it and caught it). None of the imaging had shown it (mammo, MRI). Hope you are recovering well!
Yep, I find it all very scary, too, even though I know theoretically our risk is small. You can feel pretty good knowing you did everything you could, that's for sure!
Jan 31, 2012 01:11PM mommichelle wrote:
I was 36 at diagnosis. No lump, just clusters of microcalcifications. It was so hard to make the decisions I had to make and I am so glad to be getting through everything. I pray for all of us and hope that this disease is soon in the past. I also hope for some more data for those of us who have felt in the "grey area" and had to make some very tough decisions on our own. We are a unique group and there haven't been much studies on our stats.
Jan 31, 2012 01:14PM dancetrancer wrote:
Thanks mommichelle! I just found another person while reading another thread who decided no chemo after 2 MO's told her no. I am going to add it to the original post.
This is definitely an incredibly difficult decision with no easy answer either way.
Jan 31, 2012 01:32PM dancetrancer wrote:
Oh, and for any newbies who may read this, the 2011 National Guidelines from NCCN do not officially recommend chemo/Herceptin for tumors our size. only for 6 mm and up. In the footnotes, though they do say this:
"The prognosis of patients with T1a and T1b tumors that are node negative is generally favorable even when HER2 is amplified or overexpressed. This is a population of breast cancer patients that was not studied in the available randomized trials. The decision for use of trastuzumab therapy in this cohort of patients must balance the known toxicities of trastuzumab, such as cardiac toxicity, and the uncertain, absolute benefits that may exist with trastuzumab therapy."
Jan 31, 2012 03:19PM - edited Jan 31, 2012 03:20PM by dancetrancer
Sharing this podcast with one of the authors from the 2009 MD Anderson study:
Just goes to show the controversy and how difficult this decision is. One needs to hear all sides before deciding.
Jan 31, 2012 04:53PM Beesie wrote:
dancetrancer, I don't belong here because my invasion was 1mm and it wasn't HER2 tested (for which I am grateful everyday because I don't have to question whether or not I should have had any other treatments). I do think it's a great thread and hopefully it will keep going for a long time and more and more women will join the list and the discussion. Once the thread gains a bit more traction, you might want to ask the Moderators if they will 'pin' it to the top of the forum list so that it always stays active.
One comment.... You mentioned a possible bias in the data because "women who are more aggressive about treatment may be more likely to frequent these boards". From what I've seen in my time here, that's very true. There is also another bias that you should be aware of. This is that 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.
Jan 31, 2012 05:39PM 2ns_Jenn wrote:
Add me to the list...
DX 6/23/10 - age 44 (found microcalcifications during routine mammo)
DCIS - .7cm (margin 0.1mm)
IDC - .4cm (margin 0.5mm)
Grade 2, 0/2 nodes, ER+ (95%), PR+ (80%), HER2+ (FISH HER2/CEP17 ratio 7.6), No KI-67 score, no Oncotype
1 onc said no treatment (rad or T), 1 onc said TCH x4, 1 onc said undecided, 1 onc said Rads+T
Radiation (28 + 5 boost) 11/12/10
Tamoxifen - stopped after 6 months (due to terrible side effects) MO told me it was only providing a 1% benefit so I chose improved QOL
They say hindsight is 20/20 and while I don't regret no chemo, I do regret not investigating BMX (I have VERY dense breasts full of fibrocystic tissue).
There was only one other woman who had almost identical stats as me while I was going through my decision making process (she chose the same treatment options I did) but it seems like they are finding more of us everyday.
Best of luck on your decision!!
Jan 31, 2012 07:49PM dancetrancer wrote:
Beesie, you (and anyone who wants to comment!) are ALWAYS welcome! If someone isn't t1A stage, but has valuable information to share, PLEASE do! I took the liberty of quoting your comments and putting them in the entry note, so that I don't freak out newbies. I would hate to do that and sway anyone any particular direction when as of yet I haven't found a preponderance of evidence either way. Oh, and thank you for the info about how to make this a sticky. I guess I have to see if we have enough responses before I ask the moderators to do that.
JSandstrom, you have been added to the stats and thank you for sharing your story! I had found you earlier on another thread, so don't be surprised when the numbers don't change on the entry note. I did not know your entire story/decision making process/onc recommendations so thank you very much for sharing all of that!
Feb 1, 2012 05:03PM carcharm wrote:
I was dx in 2009. I was not given an option of herceptin-it was a must have for me. I had 2 foci of invasion of dcis totaling .3cm. I received TCH. I was 49 at time of dx and I am ER/PR- HER2+++. I could have had a lumptectomy but I wanted a mastectomy. I wanted a bilateral mastectomy but was told no way-no need. I am seeing someone new and am scheduling a prophylactic mastectomy of my remaining breast soon. I see way too many women having reoccurance in the opposite breasts even though the docs say the stats don't say that.
Feb 2, 2012 09:38PM dancetrancer wrote:
Thanks for sharing your story carcharm! I will add your stats! Do you know what grade your IDC was?
I wanted to share this link for newbies - another thread that includes lots of discussion on research, etc. for our group.
Feb 2, 2012 09:52PM - edited Feb 2, 2012 09:53PM by KCD
A very timely post for me...
T1a with 4mm IDC (also have DCIS) I am in my early 30's
Have had a lumpectomy with radiation to follow
1st/2nd ) board said no chemo or herceptin
3r) Onc Herceptin only
4th) appt was Today, and the Onc says Chemo & Herceptin
I am so overwhelmed, my radiation simulation appt was already scheduled for next week.
Feb 2, 2012 09:55PM dancetrancer wrote:
Oh gosh, KCD, I sooooooooooooo feel your pain!!!!!!!!!! I have two more onc appts next week. 2 oncs so far told me no, not enough research. It really sucks to be in our position. I'm about to start radiation, too. Had my simulation 9 days ago.
Feb 3, 2012 09:10AM - edited Feb 3, 2012 09:13AM by Maja2213
Hi dancetrancer I wrote on your other post but will put my stats here to help your survey.
1. Diagnosed Oct 2010, age 44.
2. DCIS, 1.7 x .4 cm Grade 3. ER +. On top of the DCIS was an IDC of .4 cm. Grade 3. ER+ 80% but at low intensity. PR+ 40% but also at low intensity. Her 2+ at 3+.
3. My local MO recommended Herceptin after confirming Her 2 status with FISH. At the time (Dec 2010) I think he said the latest San Antonio conference (which was happening that week) was now recommending some chemo with Herceptin. I could be a bit off on that info, there was a lot to take in at the time. He also felt that my age had to be considered since I could potentially have 50 years in which a recurrence could occur. Strongly recommended "chemo light" - Taxol and Herceptin and strongly recommended a second consult because of the low stage.
4. Had second opinion at Mass General Hospital. That MO felt that ACTH would be way over the top. TCH would be the "tried and true" method of treatment. Suggested Taxol and Herceptin only to minimize side effects but results of studies using this treatment were not yet in. Choice of any of those chemos would be up to me.
5. Chose Taxol and Herceptin. 12 weekly treatments, then nine months of Herceptin alone.
6. Started Tamoxifen. Current plan is 2 years (I seem to be in menopause/chemopause) and then switch to an AI for an unknown number of years. (The length of AI treatment recommendations seem to change monthly.)
7. Surgery was lumpectomy, so also had radiation. The radiation oncologist indicated that even if I had a mx he would have wanted to radiate my lymph nodes in my underarm and up to my collarbone anyway because of the Her2 neu diagnosis. He takes Her2 very seriously and said he wouldn't know for years how well Herceptin really works so he has to treat the patient as if there is no Herceptin.
8. My age (and 2 aunts with DCIS) also led the doctors to suggest I have the BRCA testing. I had no mutations.
9. I can say I have had no recurrence, but, then again, it has only been one year and only five weeks since I ended Herceptin treatment. I did have a mammogram which was fine.
Feb 3, 2012 10:00AM puce wrote:
Diagnosed April 11. No radiation recommended for me at Beth Isreal in Boston. 1.8mm (so stage 1c) with some DCIS in left side. No nodes. Had a double mastectomy for prevention. Had neoadjuvent chemo 4 dose dense A/C every 2 weeks, 12 Taxol/Herceptin evdery week, no sign of tumor left by the time they did the mastectomy. It completely melted. DCIS still present (does not respond to chemo I was told). Herceptin until September every 3 weeks. Will ask again why no radiation. The response I got first was that with the Mastectomy and chemo there would be no cancer left for sure??? I certainly keep my fingers and toes crossed.
Feb 3, 2012 10:21AM dancetrancer wrote:
Maja - thanks for sharing the details of your story. The radiation info is very, very interesting to me. My rad onc first told me we'd have to radiate my nodes when she found out about the HER2, but when I told her I had had an SNB that was clear (she had forgotten...that did not instill my confidence in her, but oh well, she may have not had my chart with her when she called), she said we didn't have to radiate the nodes. Very interesting indeed....
Feb 3, 2012 10:26AM dancetrancer wrote:
Puce - I'm confused...if your tumor is 1.8 mm, you would be a t1A, not a t1C. Did you mean 1.8 cm???
Also, if you had a mastectomy with good margins, you most likely didn't need radiation. The only reason I need it after my BMX is b/c I did not get good margins.
Feb 3, 2012 11:22AM Maja2213 wrote:
I should add re the radiation. My RO said he was glad I came to him with the opportunity to do radiation. I do think if I had done bmx, my MO never even would have sent me to the RO because it wouldn't be standard treatment for stage 1a. And with my care, the MO is sort of in charge for arranging things. My RO was originally trained in eastern Europe and then came to the US so maybe he sees things differently.
Feb 3, 2012 11:46AM dancetrancer wrote:
Maja, it may very well be the different training. I'm trying to make note of what countries we are all from, to see if that is affecting treatment recommendations as well.
Feb 5, 2012 11:59AM dancetrancer wrote:
Bumping this for any newbies who might be watching active topics.
I also wanted to share MD Anderson's protocols for breast cancer treatment. They are the ones who did the studies on t1A,b recurrence rates. If you look at page 2 you can see if you are node negative, tumor < = .5 cm, the recommendations are:
1) no adjuvant therapy or
2) consider hormonal therapy if tumor is hormone receptor positive
3) consider trastuzumab-based chemotherapy if HER2 positive
I plan to take this with me to my next two onc appts along with the research papers and will ask them if they would consider consulting with MD Anderson (if that is posssible) on my case to determine if I am high risk enough to require chemo/Herceptin.
Feb 6, 2012 06:06PM - edited Feb 6, 2012 06:08PM by dancetrancer
Someone just posted this document on another thread:Strategies for subtypes-dealing with the diversity of breast cancer: highlights of the St Gallen International Expert Consensus on the Primary Therapy of Early Breast Cancer 2011
There were I think about 40 or so members (most were from Europe and USA, not all were present for voting). They voted on various controversial issues/topics on treatments.
The Panel unanimously supported the use of 1 year of trastuzumab as standard adjuvant treatment for patients with ‘HER2 positive' disease, and the majority were willing to extend
this to patients with pT1b, but not pT1a pN0 disease.
And if you read the more detailed summary here you will see they give details of the discussion surrounding t1A's on page 5. It says that the majority (61%) would not treat t1A tumors, but 79% would treat t1B tumors.
This international consensus panel information is helpful to me - makes me not feel so panicky about being given a "no" recommendation on treatment. However, that's not an overwhelming majority, so one can understand clearly the variability amongst recommendations we all receive.
Mar 2, 2012 04:19PM - edited Mar 2, 2012 04:23PM by Dlia
I was dignosed June 30th of 2011 my tumor size was 2 mm. The doctor's kept telling me how tiny it was and that I was only going to do just radiation. After recooperating from the lumpectomy they had a meeting with a team of doctors and had me and my husband to come after they met. Not worried or concerned because I thought they were going to tell me when radiation would start.They said because the cancer was her2 positivethey recommende that I do chemo/herceptin and radiation. I started chemo on Sept 12, 2011. I have done six regimens of Taxotere, Cytoxan and continuing Herceptin for 1 year until Sept 2012.
Mar 2, 2012 04:47PM dancetrancer wrote:
Hi Dlia! Thank you so much for sharing your story! Wow, bet you were shocked at that meeting. And for any who are wondering, I still haven't decided. Will finish rads soon and meet with MD Anderson for their opinion...then will decide.
Mar 2, 2012 04:55PM noellech wrote:
Add me to the list:
Diagnosed at 42 with 5 mm triple positive. No nodes, no lvi, grade 1 or 2. Lots of DCIS so had mast. No invasive found at mast, all taken out at biopsy.
Did TCH and now on tamoxifen. It has been almost four years since diagnosis and everything seems fine. Sometimes regret the chemo, but I know no one in my family regrets it. I have three kids and my youngest was 3 at the time, so did it for them.
I actually love the tamoxifen, i will stay on it as long as they let me. Fewer periods and I feel that my bones, heart, and breasts are being protected.
All the best, Noelle.
Mar 2, 2012 05:07PM - edited Mar 2, 2012 05:07PM by dancetrancerHey Noelle! I'm curious - what is it you regret about the chemo? Do you have some long term consequences? I admit, I am most worried about chronic neuropathy risk. I don't have children, but I still have lots of drive and motivation to stay here with DH for as long as possible. I'm hoping MD Anderson can give me better insight into my risk for recurrence so I can decide if the chemo risks are worth it. Unfortunately, from all of my research, I know that no one really knows the true risk for a HER2+ t1a patient. Lots of controversy.
Mar 3, 2012 12:44PM Dlia wrote:
@ Dancertrancer... I was totally shocked!! The doctor kept beating around the bush with if it was E or P we would do this... and I said is it Her2 or Triple neg and he said we'll get to that in a minute, in me was saying he better hurry up because I'm about to pass out!! When they told me what they recommended I was at a blank and my husband said she's going to do whatever she has to do. The nurse asked me if I was upset because I was going to loose my hair... I said lady that is the least of my worries. I had already knew about Her2 and Triple negative from my sister and cousin... I couldn't cry in front of the general but when I got home and he left I cried all day but the next day I was back on track. When people talk to me they start off sad and when they hear my voice they change and say oh you sound good... lol what are they expecting me to sound like?
Mar 3, 2012 01:00PM dancetrancer wrote:
It is a shocker for sure Dlia. I found out when I was having lunch with a friend (got a phone call that I was Her2+). I let out so many f-bombs - felt bad 'cause my friend's 2 year old was right there, LOL! And I hear ya on people's comments - they always say to me "You look so good!" Yeah, I haven't lost my hair (since no chemo/etc. yet), so I look perfectly healthy to everyone. I think it freaks others out b/c they know in general I am super healthy with diet, exercise, etc...and if it hit me...wow, it could hit them. I get annoyed but at the same time, I really understand they have no clue what to say - and are just trying to be supportive in any way they can think of. It's hard to know what to say to someone who has cancer until you've been through it yourself.
Mar 3, 2012 02:42PM kwajkid wrote:
tough decision but i am glad I got the treatment - lumpectomy, Taxol for 6 weeks (developed pancreatitis from it and couldn't continue it), Herceptin for a year, and radiation after the Taxol. 3 mm, 1a, grade 3 ER weakly pos, HER 2+. almost three years without recurrence. diagnosed at age 54.