calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
Comments
-
Thanks for the responses! The MO @ Duke offered Taxol & Herceptin( she said herceptin should not be given alone) and said my case was discussed at the morning meeting and the other MO attending agree they would also offer it. The stats she gave me were for reoccurrance 10% if I did nothing else and if I did TH it would go down to 3% Also wants to recheck my pathology. I know it's not much in %, but like she said if it makes you sleep better at night knowing you did everything you could than do it. Got a few weeks to think it over while path runs again. She also is consulting with my current MO to discuss her recommenations.
0 -
So glad you now have a choice and can decide for yourself what will give you the most peace of mind. My best to you as you ponder your decision over the next few weeks - I know what a difficult time this is. You have our support either way! Keep us posted.
0 -
I got a call later today from MO I saw today and she and my current MO are in agreement with the TH treatment. So now I can go back to where I have been going which is more convient for treatment. I am just wondering why my current MO now is ok with chemo who said no before! Part of me is like I don't care where I get it just get it done! But a little trust factor is lost as to why she didn't offer it to begin with! So a bit hesitant to stay with her! I am interested to see if path changes! After your experience dancetrancer makes me curious! I wanted another chance at this fight but it is frightening now that I have it!
0 -
I hear ya Leslie! Hopefully no major changes will be seen in your pathology. And I understand about losing some trust in your onc. But remember...the decision to do chemo in our case, especially in yours since it is on the smallest end of the t1a group, is not clear cut by any means. National guidelines do not say to do chemo. There is much controversy between oncs as to whether to do it or not. So, if you want to stay with your current onc for convenience and trust her otherwise, try to keep all of that in mind so that you can feel comfortable proceeding with her. I think the biggest thing is feeling like she can provide the chemo safely and will be very responsive to your concerns/questions regarding treatment and side effect management. It really makes all the difference when you have an onc who will "hold your hand" per se through this fight, which I agree is quite frightening. Hang in there!
0 -
well said! Thanks!
0 -
This thread is for me. I have DCIS with 3 one mm spots of micro-invasion. I am E+ P- and HER2+ >3. First oncologist said no chemo. Though the HER2+ rating warrants chemo and Herceptin (biological evidence), the small amount of invasion (physical evidence) totally trumps, so no chemo. I asked about Herceptin without chemo and was told of DCIS study, but since I had micro-invasion, I would not qualify.
Today was my second opinion with a competing health facility. She said basically the same thing, but said that for her ladies she suggests 4 infusions of Herceptin 3 weeks apart without chemo. She clarified that there is NO proof that it will be beneficial at all but that she felt that just radiation would not address the HER2+ specifically.
I'm thinking of doing the Herceptin. That is really want I wanted. Thoughts?
BTW - I'm 51.
0 -
motherofone - I believe you are technically microinvasion, not t1a (> 1mm but < 6 mm) based upon your tumor size. But you did have 3 spots - not that that makes any difference by MD classification - they go by the size of the largest invasion when staging you, not the number of invasions - but I hear ya - it would be in the back of my mind, too, making me wonder. Personally, if I had someone offering me a couple blasts of Herceptin only, I'd go for it. Herceptin was a breeze for me. Minimal side effects, if any for me. You do have to watch heart function, but with only 4 infusions I would imagine the risk is much lower (I stopped at 6 months of Herceptin b/c of concerns about my heart.) It gave me peace of mind to do Herceptin. The hardest part for me was trying to decide whether to do chemo with it - eventually I did, but it certainly wasn't an easy path for me. There aren't that many docs giving Herceptin only, b/c the guidelines show it is most effective with chemo (so it is great your 2nd opinion is offering this). Herceptin hasn't been studied alone, to my knowledge (except I think there may still be a trial of it being done alone with women over 70). So the docs don't have hard data to say yes for sure it helps. To me, though, it just makes common sense that a few blasts of it might help reduce recurrence risk. That's my personal take, my gut - but of course I'm not a doctor. Let us know what you decide!
0 -
Thank you so much for responding so quickly. There is a trial going on with herceptin only with pure DCIS patients. The first oncologist mentioned it as did the second, but because if the micro invasion, I do not qualify. My cancer is too big for trial and too little for chemo with herceptin. This second oncologist said clearly that there was no proof that this would help, but she, like you and me, think it should reduce my chances of reoccurrence. She has given me a script for an echocardiogram before I start, if I start, which I am leaning toward.
0 -
Motherofone best wishes to you with your Herceptin treatment. I know I now feel releived to have a chance to do something to reduce the statistics. Even with such a tiny area of IDC the Her2 scares me. The MO that suggested the use of Taxol&Herceptin really said the s/e and risk are very small. I hope thats true! It doesn't bother me at all to lose my hair! If I can increase my odds of being around later for my children @ 44 I think I have a ways to go!0 -
motherofone I hadn't heard about the DCIS only trial with Herceptin. How cool!
0 -
Ugh! Little voice in my head questioning am I crazy to go forward with this treatment for such a small percentage? I know its what I want! To do everything possible to fight! I guess its normal to feel this way! Just seems like a lot to go through! I have echocardiogram on Monday and then to see MO and start chemo soon after if all is good.
0 -
Leslie - there are plenty who would not take the risks associated with chemo and Herceptin for that reduction in recurrence risk. So no, you are not crazy for questioning whether to go forward or not. I'm sorry this is such a difficult decision. I wish I had better guidance for you, but unfortunately, these are decisions we alone must make for ourselves, dealing with the consequences either way. Neither choice is risk-free. It is so hard - hugs!!!
0 -
Thanks dancetrance! I am grateful to have the choice and have to trust that the specialist @ Duke would not even have offered if she didn't see some benefit small or not! I am having a hard time finding others who have just done taxol & herceptin alone to gain from their experience! Any threads I'm missing to find them?
0 -
I've "met" several women online who have done just taxol and herceptin...but not sure of a specific thread. I think there are a few on this thread, and a few on the triple+ thread. Hopefully someone will chime in!
0 -
Leslie, did you doctor have thoughts about herceptin alone? Just curious since looks like that is what I'll be doing and like you, I haven't found anyone on the boards with experience with this. I do know about the trial with DSCI Herceptin, but I didn't qualify because of micro invasion. The trial gives me confidence that this might be helpful for me too.
0 -
Hi Motherofone,Yes the Her2 specialist at Duke did say herceptin should not be given alone and other doctors should not be giving it alone. Maybe that is just when there is invasive tumors found. I know many have taken it by itself and that is just her opinion! I was hoping that was what she would recommend for me but it has to be given with chemo so that's what I will do! Hopefully the DCIS study will help support herceptin alone treatments!
0 -
I just thought about it, Herceptin is given alone after the chemo for the rest of the year so not sure of the logic of it all! :0
0 -
Presently, there is a clinical trial giving Herceptin ALONE for older women with invasive tumors. Furthermore, there is another clinical trial for SOME younger patients with invasive tumors who are +1 or +2 HER 2 "negative" and are receiving chemo and Herceptin. Both studies have very rigorous criteria that need to be met before being admitted into the trials.
0 -
motherofone, it has not been determined whether Herceptin provides any benefit for DCIS - that's why they are doing this trial. The Herceptin trial with DCIS is looking at whether Herceptin, in combination with radiation, can reduce local (in the breast) recurrence rates (and any subsequent distant recurrences than might result from an invasive local recurrence). Patients who participate in this trial receive just 2 infusions of Herceptin, one in week 1 of rads and the other in week 4 of rads. Recurrence rates will be monitored over 10 years. This is very different from the protocol and objectives for Herceptin with invasive cancer. Herceptin for DCIS vs. Herceptin for invasive cancer is an apples and oranges comparison.
Whereas DCIS presents only a localized recurrence risk, the concern with HER2+ invasive cancer is not so much a concern about local (in the breast) recurrence but more a concern about the risk of distant recurrence. The risk of mets is higher for those who have HER2+ cancers, and that's why chemo and Herceptin are prescribed to women who have smaller sized tumors. Here are some numbers out of CancerMath that might help explain this. CancerMath.net Breast Cancer Treatment Outcomes Calculator
According to Cancermath, here is the 15 year risk of death from breast cancer for HER2+ cancers vs. HER2- cancers. I've input all the same variables except for HER2 status. I input the age of 50, ER+/PR+, node negative, grade 3 ductal cancer. These are the raw mortality rates, without chemo, Herceptin or hormone therapy.
. Tumor Size: 1mm 3mm 5mm 1cm 2cm
15 Yr Mortality:
HER2- 1% 3% 5% 10% 18%
HER2+ 2% 5% 8% 15% 27%
Chemo and Herceptin are systemic treatments. This means that they go through your whole body. The benefit is that these treatments can be effective at tracking down and killing off breast cancer cells that have moved beyond the breast into the body. This is why chemo and Herceptin reduce the risk of mets, and increase survival rates. The risk is that these treatments could possibly cause side effects throughout your body. Doctors are hesitant to prescribe systemic treatments, particularly those with potentially serious side effects, for a localized cancer - and this is why chemo is never prescribed for pure DCIS. This is also why the Herceptin trial for DCIS only involves two doses of Herceptin. Exposing oneself to systemic risks in order to reduce one's likelihood of dying from breast cancer is a whole lot different than exposing oneself to systemic risks in order to reduce a local recurrence in the breast, a recurrence that in most cases can be successfully treated with surgery.
lesliecusana, you've raised the question about the amount of benefit that chemo and Herceptin will provide to you. My suggestion is that you dig a little further into this, so that you understand your local recurrence vs. distant recurrence risk. Is the 10% recurrence rate that you were quoted all distant recurrence, i.e. the risk of mets? Or is a portion of the 10% local recurrence? The overall benefit vs. risk equation of chemo and Herception for you would be very different depending on the answer to that question.
0 -
The 10% was given for distant reccurance, local recurrance was not an issue! To me 7% reduction of that risk is worth whatever I have to do! I am still gathering information and soul searching! I do trust Dr.Kimberly Blackwell from Duke Medical Center considered a Her2 specialist would not have offered if she thought there was no benefit or too risky!0 -
Beesie is playing devil's advocate to make sure those with very small tumors are very clear on the risks of recurrence for their individual case so that they can decide if the risks of chemo/Herceptin are worth it to them. When you are petrified of cancer recurrence it is easy to downplay the risks of treatment...I know...I've been there...I did do treatment but it was not a walk in the park for me at all, and honestly there have been times I have really regretted it (became prediabetic, menopausal, and osteopenic at age 46 as a result of treatment). However that is easy for me to say b/c I have not recurred thus far...wish we all had a crystal ball. Oh and I did stop Herceptin after 6 months due to fear of heart damage (my numbers were declining), and I decided at that point the possible benefit of further treatment was less than the risk of it, based upon my size tumor. I can't tell anyone what to do b/c either way - recurrence or long term side effects of tx - you have to live with your decision. The smaller your tumor is, the more you have to think hard about whether the potential risks of treatment are worth it. Man I wish you all did not have to go through this decision making process! It sucks! Hugs!
0 -
I appreciate any advice I get! I am sorry to hear about all your problems from your treatment it sounds like it was rough! You had a rough enough time getting dx. Hugs and Thanks!
0 -
Wow! I appreciate the good discussion on the delemma we are all facing.
Beesie, my thought is, because they are doing the trial with Herceptin only with DCIS, it couldn't hurt for me to do it since Im DCIS and microinvasion. I realize the producol is just two infusions 3 weeks apart during radiation, I asked my new oncologist why. She safely it was because it would measure up to radiation time-6 weeks. She is suggesting that I do 4 infusions 3 weeks apart. What are your thoughts?
Leslie, I must admit that it concerns me that your HER2+ specialist at Duke will not do Herceptin alone and mine is suggesting it. Mine openly admitted that it may be of no value since it hasn't been studied in this way.
I will make decision this weekend. What do I have to lose if I do it?
0 -
Motherofone I am finding out that all doctors are different in their methods of treatment through this journey! It is up to us to do what we feel is best for our own situation. Decision making is tough! Hugs to you!0 -
Herceptin is approved for use as follows:
Herceptin is approved for the treatment of early-stage breast cancer that is Human
Epidermal growth factor
Receptor 2-positive (HER2+) and
has spread into the lymph nodes, or is HER2+ and
has not spread into the lymph nodes. If it has not spread into the
lymph nodes, the cancer needs to be estrogen receptor/progesterone
receptor
(ER/PR)-negative or have one high risk feature.* Herceptin can be
used in several different ways:- As part of a treatment course including the chemotherapy drugs Adriamycin®
(doxorubicin), Cytoxan® (cyclophosphamide), and either
Taxol® (paclitaxel) or Taxotere®
(docetaxel). This treatment course is known as "AC→TH." - With the chemotherapy drugs Taxotere and Paraplatin® (carboplatin).
This treatment course is known as "TCH." - Alone after treatment with multiple other therapies, including an anthracycline (Adriamycin)-based therapy
(a type of chemotherapy).
*High risk is defined as ER/PR-positive with one of the following features: tumor size
>2 cm, age <35 years, or tumor grade 2 or 3..
It is recommended that Herceptin be taken for 1 year — and there are different dosing schedules:
- AC→TH: Herceptin is taken as part of a treatment course including the chemotherapy drugs
Adriamycin, Cytoxan, and either Taxol or Taxotere - TCH: Herceptin is taken along with the chemotherapy drugs
Taxotere and Paraplatin (carboplatin) - Monotherapy: Herceptin is taken alone after treatment with several other therapies, including
an anthracycline (Adriamycin)-based therapy (a type of chemotherapy)
.
http://www.herceptin.com/breast/
.
Any other use/protocol is off label (i.e. not approved). Some doctors and facilities are fine to prescribe treatments that are off label; others are not. motherofone, that would be why your doctor is suggesting Herceptin without chemo, while lesliecusana's doctor is against it. One could argue that those who prescribe off label are leading edge, innovative and doing what they can to find treatments for their patients. Or one could argue that they are irresponsible for exposing their patients to untested regimens and using drugs for purposes for which they have not been tested.
Separate from FDA approvals, there are established treatment standards, as documented in the NCCN Clinical Practice Guidelines. Some doctors stick firmly to the guidelines while other doctors use the guidelines as a starting point and then make small changes in their treatment recommendations based on the specifics of the case. The guidelines for HER2+ tumors that are ER- are on page 74 and the guidelines for HER2+ tumors that are ER+ are on page 76: http://www.nccn.org/patients/guidelines/breast/index.html#1
motherofone, I'm afraid I'm not qualified to offer advice or even an opinion on the protocol that your doctor has suggested. I'm really just another patient who happens to be good at digging through the research.
0 - As part of a treatment course including the chemotherapy drugs Adriamycin®
-
Well 1st chemo/herceptin went well! I believe I am getting the tiniest dose of taxol ever given( 6mg). The nurse had to double check with the Dr before starting it. I am fine with that as long as it's enuf to do the job for herceptin to work! Not sure if it will gradually increase over next 11 more weeks will have to question that. I wasn't aware at the time the usual weekly low/dose is 80mg I think. I am at peace making the choice to go forward with this and will have no regrets!0 -
Just curious if the other sisters with less than 5mmIDC treated with taxol what your dose was weekly? Thanks!0 -
So glad your first treatment went well Leslie - wishing you minimal side effects!!!
0 -
Thanks! I hope so!
0 -
New Options for Low-Risk, HER2-Positive Tumors Featured in Research Overview Anita Shaffer Published Online: Wednesday, May 7, 2014 :
http://www.onclive.com/publications/Oncology-live/2014/April-2014/New-Options-for-Low-Risk-HER2-Positive-Tumors-Featured-in-Research-Overview0
