Jan 27, 2012 12:01PM groovygirls wrote:
I thought with the HER2 that you would have chemo. Did you have onco type testing done? Perhaps this number is low then no chemo.
Testing, treatment, side effects, and more.
Posted on: Jan 27, 2012 11:57AM
I've read thread after thread and all of the info, opinions are running together in my head. I've only had since yesterday to absorb all of this (was up til 1 a.m reading). I know this is a controversial topic, but I want to hear why you WOULDN'T recommend chemo for < 5 mm of IDC her2+ (mine is 3 mm).
I had my tests run at Emory (I was there for a 3rd opinion on radiation). They found the IDC (3 other facilities missed it, including UAB) and tested it for Her2. Transferred my results to UAB. Found out I was HER2+ yesterday.
UAB told me yesterday afternoon, lets cancel your radiation, meet with onc to discuss chemo next week. Go ahead and rip your rads stickers off. So I did.
Today they call me and say, nope, we talked to the onc and they said chemo isn't warranted with your small cancer. Come back in to get the marks drawn back on, b/c we want to start rads ASAP next week, you are already behind schedule.
So, I've got a call into Emory to see what their onc says. WTF. I'm so sick and tired of sleepless nights, changing opinions, thinking I'm going to die if I don't do chemo (OK, I know that's overreacting, but you all know how it goes) and convincing myself to do it, then I hear, nope, you don't need it. I could do without this emotional rollercoaster, thank you very much. Now I'm afraid to NOT have chemo and am paranoid about recurrence.
HELP talk me down off the ledge please! (LOL, just kidding, but d*mn!)
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Jan 27, 2012 12:01PM groovygirls wrote:
I thought with the HER2 that you would have chemo. Did you have onco type testing done? Perhaps this number is low then no chemo.
Jan 27, 2012 12:03PM dancetrancer wrote:
Oncotype is irrelevant, supposedly when you have a small cancer my size, especially if it is HER2+. My docs said it was too small to test for onco.
Jan 27, 2012 01:00PM - edited Jan 27, 2012 03:35PM by TheLadyGrey
My understanding is that the HER+ status renders the Oncotype irrelevant because it pops the number up over the chemo threshold regardless of any other factors.
My invasive component was 6 mm split between ER-PR-HER+ and ER+PR+HER- cancers. I haven't seen a similar pathology on the board. I just love being special.
My oncologist said there was no way to break down the percentage of each flavor of cancer. Obviously, the HER+ part was something less than 6 mm.
Personally, I am skeptical that the measuring is as precise as we are led to believe. Since cancers this small are only recently detectable, it stands to reason that measuring them may be problematic.
I suspect that the standard of care will ultimately be that chemo with Herceptin is appropriate regardless of size. My sense is that we have landed in an area in a state of flux.
If you haven't yet, read my thread and BlairK's thread on this forum. Blair's wife had a less than 5 mm cancer and she is doing the same regime I am - TCH x 4 plus Herceptin for a year. I'm not going to tell you it is "doable" today as I am in the depths of digestive distress, but I have no regrets.
It is a tough call - how old are you?
Jan 27, 2012 01:06PM dancetrancer wrote:
Thanks so much Lady Grey - I had made it part way through Blair's by 1 a.m. last night, and still need to get to yours -definitely will do.
I am 43, premenopausal, so one would think that would up the concern, no?
I've copied the MD Anderson study and am dropping it off at my Ro's office today, expressing my concerns and asking her to talk to one of UAB's other MO's. Still waiting to hear back from the Emory MO.
I'm really not very comfortable with the no chemo recommendation, based upon the little that I've read so far. Thank you so much for chiming in!
Jan 27, 2012 01:19PM cookiegal wrote:
dt, you are right on the borderline for chemo with that tumor size....this is not my expertise, but perhaps you are a candidate for herceptin alone...or a trial of some sort...I do know people who went no chemo with exactly that diagnosis....
Jan 27, 2012 01:26PM 37antiques wrote:
Going by the NCCH guidelines, they recommend chemo only after 1 cm. Less than that depends on if the tumor has unfavorable features if you should have 5 years of hormone therapy or not. Did you go through chemo with the first dx in July? Maybe that plays into it too. Just the HER2 status won't determine chemo or not, it's everything. But I would think if you opted for chemo, they would have to do it, however, if you just had chemo, they would advise against it. I hope that helps some.
Jan 27, 2012 01:27PM Moonflwr912 wrote:
Just to chime in, I had a 1.6 cm tumor that is HR2+ and was told that chemo was recommended. And, because of family history, that is how I lean as well. Just another opinion, ( and you will find a lot of them on these boards, LOL) Take care and much love. Do what feels right for you, after you have done research!
Jan 27, 2012 02:02PM - edited Jan 27, 2012 02:06PM by voraciousreader
Dancetrancer... Please make an appointment with an MO and discuss your risks and benefits. The RO should NOT be in the middle. You also need to know your ER status, whiile you wait check out the NCCN guidelines. IMHO, I think they will be updating it soon... While there are no trials presently for that small of tumors...there is retrospective analysis that seems to be movind towards supporting therapy. By all means, get several opinions... Or even have them present your case to a tumor board. Ultimately, it is going to be a tough call... Only you will know the right answer once you meet with several doctors. Good luck.
Jan 27, 2012 02:41PM - edited Jan 27, 2012 02:48PM by AlaskaAngel
This is really a tough one for medical providers to deal with because it isn't based on exact science until they have data indicating whether or not Herceptin alone is adequate, or maybe Herceptin plus hormonal treatment.
As just one example, moonflwr912 and I had the same general risk regarding tumor characteristics and family, but my reaction was exactly the opposite to hers. Had Herceptin been available at all when I was diagnosed, I would have done Herceptin. As it was, I would have done the alternative that was available at that time (ovarian ablation + tamoxifen). Those who are able to take lots of time off from work to deal with prolonged chemo treatments and recovery have the "luxury" of preferring it, and those who don't, do not. Doctors are stuck in the middle between me and moonflwr912.
What the NCCN authorizes is generally what insurance companies will cover, and trastuzumab is pretty spendy, with all the support services required for being administered in a facility.
There are indications in both directions -- as Voraciousreader says, some retrospective analysis seems to be moving toward supportive therapy, and at the same time, new information tells us that the combination of trastuzumab and lapatinib that is being used without chemo for some patients prior to their surgery is showing particularly good effect. It is hard for providers (and patients!) to know which direction to take.
P.S. I really believe that given the differing preferences of those like moonflwr and I, the docs should lean toward supporting the patient's preferences and not try to influence the patient one way or the other. Part of what each of us has to deal with in terms of the results is the strength that comes from listening to our own inner voice.
Jan 27, 2012 02:51PM bluedasher wrote:
Antiques, you may be looking at an older version of the NCCN guidelines. (I'm assuming NCCH was a typo and you meant NCCN.) The 2011 version recommends chemo and Herceptin from 0.6-1.0 hormone+ HER2+ node negative. The 2009 version recommended it for that size only if it was moderate/poorly differentiated or had unfavorable features.
Kind of strangely, for hormone- HER2+ 0.6-1.0 cm node negative, the 2011 guide says consider chemo and herceptin which is the same as the 2009.
dancetracer, there is controversy about the treatment of HER2+ less than 0.5 cm. There is an active thread on this at the moment titled How Large does Tumor gets Chemo and Herceptin. The authors of the MD Anderson study suggest that even those less than 0.5 cm should get chemo and Herceptin.
In 2008 when my cancer was diagnosed, the oncologist said chemo/Herceptin was optional because it was less than 1 cm. I decided to have chemo partly because I felt uncomfortable with how accurate the measurement was. The vacuum assisted biopsy I'd had had removed a good sized chunk of my small tumor so how could they be that sure of the size. Maybe the tumor that now measured 0.9 had been slightly over 1 cm before biopsy. A millimeter just isn't that large. Then the MD Anderson study came out while I was in chemo and reinforced the decision I'd made.
With my cautious engineer nature, if I was in your shoes, I think that I'd be asking myself how sure they are that the IDC was 0.3 cm of the whole 6 cm in tissue when the tissue had handled by 4 pathologists before it was noticed?
Don't let them push you into making a snap decision. It is worth a few days to talk to a couple of oncologists and consider this.
Jan 27, 2012 03:07PM bluedasher wrote:
AlaskaAngel posted while I was writing. I want to respond to this in her post:
Those who are able to take lots of time off from work to deal with prolonged chemo treatments and recovery have the "luxury" of preferring it, and those who don't, do not
My husband took early retirement a couple of years before my diagnosis and I've been the sole wage earner since then. I could have gone on disability during treatment and that would have covered most of my salary but would have been a significant loss of non-salary compensation (cash and stock bonuses). Also I felt that having work to focus on would help me through the discomforts of chemo. And I would be worried about the tasks I'd had to hand off, catching up later, etc. Therefore I worked through chemo.
I took the occasional day or half day off when I was feeling crummy and I work from a home office so I could take a nap if I needed to. I was able to arrange my chemo schedule so that 3 business trips fell in the third week of a chemo cycle (the time when one feels most normal and immunity is back up from the post chemo low) so I only missed one of my business trips for that. I took my laptop with me on chemo days and had good solid work time during the infusions.
Depending on the nature of one's work and one's own health/stamina, one may be able to work through chemo. There were some on my chemo thread who took disability and some who continued to work.
Jan 27, 2012 03:52PM dancetrancer wrote:
37antiques, I have not had any treatment so far except for my BMX. The IDC was missed by 3 pathologists and only caught just recently by a 4th review, 2 weeks ago.
Voraciousreader, I have an appt set up with the UAB MO for next Thursday. However, my RO wants to start rads ASAP, since I am behind schedule (4 mo post-op), so she called that MO to discuss my case yesterday. It's a big old mess. I'm also working on a 2nd opinion from the Emory MO. I may have no choice but to start rads and then if things change, stop and start chemo. I am ER+. I've already checked the NCCN guidelines. I know that they do not recommend chemo for tumors as small as mine, however, the MD Anderson study felt that the risk was significantly elevated for recurrence with tumors < 1 cm and recommends the NCCN guidelines be changed. My case at Emory has already been taken to a tumor for a decision on rads, that's how they found the IDC. I feel a big time crunch to get a decision made ASAP b/c I am 4 months post BMX, with no other treatment, needing rads due to close margins, vs starting chemo instead b/c of the new HER2 news.
AlaskaAngel - this really comes down to whether insurance companies will cover it or not? Then how are the other people like Lady Grey and Blair getting their treatments covered? I appreciate the feedback about listening to our inner voice...I'm trying to hear it, and my fear is raging pretty loud right now and making me think I've got to be crazy to not do the chemo. However, I know myself well enough to know I'm barely 24 hours into learning about all of this, and I need more time to digest the info.
Bluedasher, I've been reading that thread...all the back and forth and numbers...my head was swimming by the end of it. I need to revisit it when I've got more sleep!!! I appreciate the input about the 3 mm, I assume you are inferring it could have been larger if that many missed 3 mm? Knowing that the entire tissue block is not inspected...hmmm...well...you just never know what else might have been in there and not caught. It is a very good point you bring up.
Thank you everyone for your input. Keep it coming, the more I toss it around, the more I learn and figure out what the heck to do.
Jan 27, 2012 04:39PM dancetrancer wrote:
Can someone tell me why they would even test for HER2 with < 5 mm IDC, if it isn't going to affect the treatment plan??? Just venting. It makes no sense. Perhaps Emory will be giving me a different opinion, since they are the ones who ordered the test.
Jan 27, 2012 05:09PM - edited Jan 28, 2012 08:50AM by kathleen1966Hello, I understand why you may want chemo as there HAVE been studies that even small Her2+ cancers, as they are soo aggressive, have a very high recurrence rate. I don't know if Herceptin alone is going to change this but what they are saying NOW is that Herceptin works best when given with chemo. I would want some form of chemo, even if it were only four cycles if I had a Her2+ invasive cancer of any size. I think you need a second opinion and possibly then a third opinion. I would say being 43 should also be a factor in your getting chemo with the invasive Her2+ cancer. What are they recommending. I was diagnosed at 44 and most of my cancer was DCIS (7cm), I had numerous very small tumors with the largest being 1.6. It went to four nodes at this size. If you had ONLY DCIS than I would feel confident with this plan but I see why you are questioning it. Yes, you could use anti-hormone medications and not need chemo. But you are Her2+....that should mean chemo in my opinion. Good luck and keep pushing until you are confident with the answers they are giving you.
Jan 27, 2012 05:15PM dancetrancer wrote:
Thank you Kathleen!!! I definitely don't want to do chemo, but gosh, I can't imagine the kind of fear I'd be creating in my own head on a daily basis if I went without it, after reading about HER2...I'm gathering studies and reading and reading and reading! Thanks for the continued comments and input!
Jan 27, 2012 05:18PM AlaskaAngel wrote:
Just like you, I have no answer to why they do the test when the tumor is tiny, unless their feeling is that they should do it because you are at a time of transition and that allows the doctor the information to be able waffle a bit for those who demand chemo or those who demand trastuzumab alone but need a doctor's help to convince their payor that chemo isn't justified but trastuzumab is a good idea. Someone else here might be able to answer that question.
By choice, you worked through chemo, which I think is how doctors should support patient preference. I understand it was difficult, but still.... a choice.... unless you would have been open to using trastuzumab alone (or a non-chemo alternative) and could not get it.
What is important here at this juncture is to avoid being dogmatic since we don't have genuine proof yet indicating there is sufficient benefit greater than risks either way. Patients can get multiple opinions. If they still aren't sure what choice they should make, they end result is that they make the choice they feel they are most comfortable with. But her situation is particularly difficut in regard to the radiation recommendation.
Jan 27, 2012 05:34PM AlaskaAngel wrote:
When you mentioned hormonal treatment, what were you referring to?
The reason I ask (and I know some appreciate it and some don't), is because I don't know what hormonal options she has been offered. If she was offered just tamoxifen as a premenopausal HER2 positive, there is the open question of whether or not the use of tamoxifen for 1/3 of HER2 positive patients results in resistance to the tamoxifen, with no other protection. It may be that she was also offered ovarian ablation of one kind or another as an alternative to the possible risk with the use of tamoxifen, but it hasn't been mentioned specifically.
Jan 27, 2012 05:46PM dancetrancer wrote:
So far, Tamoxifen was recommended by the Emory MO, but this was before we had Her2 info. I have not received a f/u recommendation from her since those results came in yesterday. Are you saying if you are HER2+, Tamoxifen may not be effective in 1/3 of patients? I think I remember reading something about this last night... No one has mentioned ovarian ablation to me, but I have yet to meet in person with the UAB MO next week. Is this something I should consider? Yikes.
FYI, radiation is recommended due to close margins of DCIS after BMX (the 3 mm of IDC was free and clear of the margins).
Jan 27, 2012 05:55PM - edited Jan 27, 2012 05:57PM by AlaskaAngel
Here is a study about tamoxifen that indicated that those HER2 positive patients who had a high AIB1 level had resistance to tamoxifen. The question had been raised as early as 1989. I don't know of a way that patients are tested individually for their AIB1 level. I would just ask the doctor who is prescribing it to explain his position about it. (I am not a doctor.)
Jan 27, 2012 05:58PM suzieq60 wrote:
Danetrancer - I sent you a PM - you can read them by clicking Private Messages up the top of your screen.
Jan 27, 2012 06:14PM Moonflwr912 wrote:
Dancetrancer, lots of info coming at you right now. I had a bmx, and just recently had to have one of my te's removed, and so chemo is delayed. As my mo said, I am free of bc right now and the chemo is protective. Otherwise I'd be nuts with all the delays. Clear margins, SNB clean, and I am still getting chemo, I will not be working, I wanted to try it, by MO said, it wasn't a good idea as I work on a med surg floor in a hospital to intense and dangerous with a comprised immune system. I know people who have both worked and not, whatever you have to do you do. With this disease, some decisions are not really decisions but reality. Give yourself time to do what works for you. And take a break from all of us if you need to! LOL much love. Take care.
Jan 27, 2012 06:21PM AlaskaAngel wrote:
There are no ideal treatments with bc.
Surgical ovarian ablation is a difficult choice (loss of libido, vaginal dryness, end of reproductivity, etc.)
Chemo usually causes a very similar result, but the younger a person is, the less likely that it provides complete ovarian ablation and the less likely that the disadvantages are as permanent as they are with surgical ovarian ablation. At the same time, the less permanent the disadvantages are, they more likely there is less protection from the hormonal influence for those whose chemotherapy doesn't provide complete/permanent ovarian ablation.
Once a person is actually postmenopausal, the aromatase inhibitors can provide additional protection for HR positives.
Jan 27, 2012 06:25PM CTMOM1234 wrote:
When the IDC is that small, I was under the impression it wasn't even tested for HER2 status. In my final path. report after my lumpectomy for grade 2 dcis, 1.75 mm of IDC was detected. No HER2 status was listed . . . BS told me that they don't test for such a small amount of IDC and when I met with oncologist, she said no chemo as IDC < 1 cm.
Jan 27, 2012 06:34PM - edited Jan 27, 2012 06:34PM by AlaskaAngel
The recommendations for chemo have been lowered more recently to include those with tumors over 0.5 cm who are HR+ and HER2 positive -- but not those who are HR- HER2 positive.
I don't understand why, since HR negatives don't have the additional option of using hormonal therapies,and to establish that difference of treatment is to say that HR+'s are at higher risk than HR- HER2 positives without indicating why that would be so. I no longer see any onc but maybe that is a question to ask oncs.
Jan 27, 2012 06:41PM dancetrancer wrote:
Interesting CTMOM. I very much need to talk with the MO who ordered the test!
Jan 27, 2012 06:51PM AlaskaAngel wrote:
I guess what I am saying is this:
Although the majority of HER2 positives don't have the high AIB1 level problem with tamoxifen, a minority do, so it might not be a good idea to rely on tamoxifen as the only treatment. If that is your only treatment and you happen to be among those with a high AIB1 level and develop resistance to the tamoxifen, you wouldn't have any other protection until you were postmenopausal enough to use an aromatase inhibitor.
Another indicator of this issue with a high AIB1 level is that it has also been demonstrated recently to be a significant risk factor for a majority of those who are HR-.
Jan 27, 2012 07:52PM TheLadyGrey wrote:
dancetrancer, for what it is worth I spent hours and hours researching - I have an Internet Medical School post graduate degree in tiny HER+ cancers - looking for reasons to NOT do chemo.
I couldn't find anything on my facts - my special BC also has/d additional characteristics (i.e Grade 3 and other stuff I can't remember now) that lifted me out of the < 1 cm question mark pool.
I went into chemo kicking and screaming and, on the day of the first treatment, crying like a 2 year old madder than a wet hornet. Wowee! You did NOT want to be in my visual death zone.
It is a risk/reward analysis. I could not come up with a material downside risk to chemo FOR ME. I am not a worrier about my health, probably to an unrealistic extreme. My husband was present for my oncologist's candy coated version of side effects so I had little to work with there. My family was vocal that I should do it, and I didn't have a comeback besides "I don't wanna - so there!"
The downside risk of declining is obvious. That was me though - only you know you well enough to make this call.
For me, chemo has seriously sucked. I don't think anyone should decline it on that basis alone, but I do think I got sold a bill of goods - it has been way, way worse than I expected it to be - of course, I think I'm bulletproof - but it has also gone faster than I expected it to.
I also think I would have been fine not doing it. HER+ cancer seems to do what it wants to do and I am unpersuaded that the chemo will make a material difference, although it appears Herceptin is an effective drug. Mostly I did it to shut everyone up.
I know I haven't even begun to process all of this emotionally while everyone around me is saying "you are done!" Uhhh....no...I don't actually think I have started with the hardest part.
Jan 27, 2012 08:04PM teagal wrote:
Hi ~ I was just recently diagnosed. Tumor size 1/2", ER+PR-HER+. I had a lumpectomy 1/6/12; met with the oncologist 1/24/12 and the TCH for 5 months and the remaining 7 month Herceptin regimen was recommended; then radiation for 6-1/2 weeks and finally Arimidex daily for 5 years. They got clean margins and my sentinel node was clear.
My mother died of ovarian cancer in 1975; my aunt died of uterine cancer in 1993. My niece had a mastectomy at 35 and has been cancer-free for 8 years.
I go back and forth on what to do and I am seriously considering in going with Herceptin alone drug-wise then the radiation and Arimidex. My onc said since my tumor was small and I'm in such great shape she would do it.
Is there anyone out there that has done Herceptin alone? I need to make a decision by next Thursday so and and all feedback will be greatly appreciated.
Jan 27, 2012 10:16PM teagal wrote:
My husband did a little research on the web and according to some of the things he's read it only decreases the chance of recurrence less than 5%. So, not sure I want to go through the hell for only a less than 5% improvement. Admittedly there isn't much information out there with Herpecin alone treatment and my mind isn't made up....yet.
Jan 28, 2012 12:36AM CTMOM1234 wrote:
dancetrancer - I agree, interesting indeed. My 1.75 mm of idc was grade 2 and I was your age (early 40s) at time of diagnosis -- to this day, I have no idea what the HER status is on that idc.