Posted on: Jan 31, 2012 06:59AM - edited Apr 24, 2014 03:29AM by dancetrancer
Posted on: Jan 31, 2012 06:59AM - edited Apr 24, 2014 03:29AM 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."
Aug 28, 2013 06:15PM - edited Aug 28, 2013 06:17PM by rosamond
Thanks for the welcome, and glad to hear you're doing better.
Yes, I was also surprised by the multidisciplinary conference (essentially, a tumor board) that only recommended anti-estrogen therapy and not Herceptin with at least a single agent chemo. The oncologist I will be meeting with on 9/4 is part of that group, so the justification will be provided to me then, but I think I will still have other options. I am leaning towards a Herceptin-only/Tamoxifen combo as some recent research shows that this combination has synergistic effects. Doing a full course of chemo seems like over treatment for my situation, especially since my tumor receptors are so strong for estrogen-which means an anti-estrogen blocker should be highly effective.
The jury is still out on my follow-up, so keeping an open mind and looking forward to my consult with the onc, who is a highly regarded researcher. I will report back what she says as well as my plan once it is decided!
Sep 5, 2013 07:28AM rosamond wrote:
Update after consultation with the oncologist at U of Chicago: she was not part of the conference, but confers that there would be little benefit and many risks of a chemo/Herceptin combination and does not feel the risk is high enough to warrant Herceptin alone. The tumors were 1.6mm in the mastectomy specimen and 3mm in the MRI biopsy, with very wide margins, but they apparently emerged from extensive DCIS.
Both the invasive tumors and the DCIS tested moderately to strong to estrogen in greater than 90% of the tested cells, and moderately to progesterone in a small amount of cells (so, weak), plus highly amplified HER2. Tamoxifen was prescribed, which I began last night, exactly three weeks post-mastectomy.
When we discussed the controversy with these tiny HER2 positive tumors, this oncologist said that most of the less favorable prognoses have been associated with the t1b category, especially in the Anderson study, and that there is every reason to expect a low risk of recurrence (she put it in low single digits) for the t1a tumors removed in my particular case.
For peace of mind, I have already put in a second opinion request with the local HER2 oncologist expert at Rush University in Chicago. I do hope for consensus as the entire team of oncologists at U of C were in agreement. I'll be back to report after the second opinion.
Wishing everyone well with their own choices and decisions!
Sep 6, 2013 07:30AM 2ns_Jenn wrote:
I will be very interested to hear what they say at Rush. I went to both UofC & Rush and got mixed results. UofC said they wanted to get more info & testing before making a recommendation & Rush told me I should do TCHx4 without even blinking.
Best of luck to you!
Sep 12, 2013 11:02AM CassDugan wrote:
I'm so glad to have found this thread today. I was diagnosed with Paget's this past spring and had a partial mastectomy for it. DCIS and IDC were found in the underlying tissue. The IDC put me at t1a. All three were HER2/neu positive at 3+. Only the DCIS is ER positive. I have since undergone rads. Tomorrow is my second meeting with my MO whom I've not seen since prior to the rads. During the first meeting she suggested 5 years of tamoxifen.
Since reviewing my pathology more closely, I'm curious why she didn't suggest Herceptin. The lack of suggestion has shaken my confidence in her. Certainly, I will bring it up tomorrow, but now I'm wondering if I should considering finding another MO. I guess, mostly I'm curious why she would not have suggested it.
Sep 12, 2013 03:37PM rosamond wrote:
CassDugan, there is not enough research to support no chemo vs. chemo w/Herceptin vs. Herceptin alone for tumors as small as ours. Ask your oncologist to explain her reasoning.
Jenn knows this, but my Rush consult was an unpleasant, and, I felt, a pessimistic and alarmist experience...not to say that this particular MO and recommended courses of action may not be a good match for others. She recommended TCHx4 as the most cautious option but admitted that Tamoxifen only would be considered by many to be a valid approach.
Even though they were all at U of C, several MOs came to consensus that chemo/Herceptin would not offer me much of a statistical benefit. My instinct agrees, and I am taking Tamoxifen as well as working to maintain a healthy 20 lb. weight loss from this summer in order to reduce the likelihood that estrogen will fuel any future tumors. My tumors tested highly positive for estrogen.
And, I am giving it up to the powers that be in the universe.
I wish everyone all the best in their difficult decisions. May you find peace and be healthy for as long as possible!
Sep 12, 2013 05:25PM dancetrancer wrote:
It's definitely a difficult decision. I wish it were more clear. I would say from what I've heard from others and seen by my own research, most docs say Tamox only is indicated. HOWEVER, there are some docs (like mine at MD Anderson) who strongly feel the risks of recurrence from a t1A tumor are higher and warrant chemo/Herceptin, esp if you are younger. I have to say, though, one should not take lightly the risks of chemo/Herceptin, either.
So CassDugan, your MO isn't wrong/bad/etc. The doctors do not have a real strong concensus on this decision. Most say no, I am sure b/c that is what the NCCN guidelines say.
I wish there was clearer guidance for us, but sadly, there is not.
Sep 12, 2013 06:03PM rosamond wrote:
Some philosophical perspective for all my teeny-tiny HER2 tumor sisters:
“You may be forced to make choices without enough time or information to feel confident in the decisions you make. This is a new and permanent architectural feature of your life.
Confidence is rarely encountered and will almost never be felt in any medical context.” - Augusten Burroughs, This Is How
Nov 1, 2013 09:31PM - edited Nov 1, 2013 09:35PM by slg76
I'm doing some research for my newly-dx aunt. My cancer is Her2- so I'm learning a lot about Her2+. I'm curious about a tumor that is 0.5 cm and was an invasive spot found within DCIS. It is stage T1a, grade 2, ER/PR+, Her2+. Does anyone know if chemo is a routinely used treatment for tumors so small? And, does the need for chemo change if a mastectomy is done instead of a lumpectomy? Of course we will discuss everything with a MO but we are having trouble getting the referral through. Thanks in advance for the help :)
Nov 1, 2013 09:51PM slg76 wrote:
I just read back further in this thread. If I'm reading right it sounds like you are off the hook for tamoxifen? In case that isn't the case I wanted to mention a thread I'm active on called "coming off tamoxifen early to have a baby". I, and the other women there, have all considered tamoxifen vs. conception and are knowledgeable about the best ways to preserve fertility while going through chemo. I hope you are doing well and your treatment is going smoothly.