No chemo a realistic option?
First post - I'm 36, Stage IIB, PR+ (100%) & ER+ (96%) & HER2+, tumor was 3cm & 1 lymph node. Had a double mastectomy in July. CT scan & bone scans are clear. Recommended treatment is TCH&P for 6 rounds, Herceptin for a year, Lupron & Femara for 10 years....
I think I'm ok with the idea of doing the Herceptin & hormone therapy but I am SO torn on the chemo!! I'm on the natural side of things, doing lots of juicing, wheat grass, essiac tea, just started RSO cannabis oil regimen & a gazillion other supplements. Bear with me but in my mind, the Hereceptin is taking away its caffeine & the hormone therapy is taking its food so.... I just feel like between the Herceptin, hormone therapy & alternative methods... chemo may be an unnecessary suffering that could do more harm than good. I know HER2+ is no joke & its the only reason I'm debating it. Anybody have any feedback on doing, not doing the chemo? TIA!
Comments
-
What I did is listened to my mo, did all the testing and decided to due hormone AI treatment alone. I was 53 and post medipausal 2 tumors 1cm one ILC and one IDC. I was 95% ER+ and PR negative less than 1%. My oncodx was a whopping 34. I chose no chemo, I had no node involvement and did left mastectomy. I'm ok, I was so afriad chemo would upset my GI tract and my QOL would suffer. Plus I was worried about chemo damage and those drug resistant cancer cells. My oncologist really wanted me to do chemo but I said no. Somehow I knew I was making the right decision.
This is your body and you can choose, just make sure you get all the information you can.
-
Well, it certainly is your decision, but Her+, with nodal involvement, seems a very dangerous situation. If it were me, I would do the chemo, as it is supposed to to be used with Herceptin. In fact, most oncologists won't give you Herceptin without chemo. Another factor is your young age, which is also an indicator for chemo. Best wishes whatever you decide.
-
I agree totally with yorkiemom. Her2 is very aggressive
-
I've seen some do herception no chemo but that was mainly for stage 4 or people whose health makes chemo not viable.
If you are worried about your hair there are cold caps, penguin is a popular brand. Ice for mouth sores snd specisl cold mits for hands and feet. And drugs to help with some side effects like nausea.
If I am faced with recurrence I might do chemo.
-
Also there are trials for her+, even a vaccine for possible prevention. You may want to look into it.
Good luck.
-
You asked, so here is my opinion! Absolutely you should do chemo with your diagnosis. With Her2 positive you need every tool out there. I will be 5 years out next month. I want this for you too, plus plenty more years. Over the last 5 years, I've talked with literally thousands of breast cancer patients. The only women I met who were Her 2 Pos that did not do chemo were now Stage IV. And they deeply regretted that they did not have chemo.
I am so passionate about this because I've been down those wheat grass, essiac tea, coffee enemas, and juicing with my beloved father who was diagnosed with Stage IV cancer. He died.
So when I was diagnosed with an aggressive breast cancer not too long after my father's death, I vowed I would do everything my Oncologist said. I went to the best Oncologist within 100 miles of my home and never deviated. I believe I am alive today because I did what he told me to do. Then my mom and sister were diagnosed with breast cancer - all of us within 3 years. It has been one long, tough road. But all of us are here today and for that I am so grateful.
I do not want you to have any regrets. None of us wanted to do chemo. Who would? But it is doable, and you will get through it.
-
we always have options and can choose what we want ...but I wholeheartedly agree with Denise Her2 is very aggressive ( I had the same diagnosis) but we have amazing treatments - Herceptin is truly a game changer for us
Give yourself every chance for a cure
-
If you are like me, I get really freightened when people and doctors demand I follow a certain treatment. Take a breath and gather information and decide for yourself. There is so much information out there particularly on personalized cancer treatment. It seems like words patients want to here but it doesn't seem to be true. In your case the standard is surgery, chemo, herceptin then hormone therapy. I dont think many doctors trust hormone therapy as a good enough treatment. It is like having weeds in your lawn round up kills everything weeds and grass you name it. But it isnt a guarantee the weeds wont come back.
Please dont react out of fear, the her+ is more aggressive but the good news is many aggressive cancers are the ones that get successfully knocked down. Herceptin and possible trial vaccine seems effective on it.
-
Count me as part of the contingent who would advise you to do the chemo. Even though I have metastasized, in spite of chemo, it bought me time and continues to buy me time. I worked through my first Dx as a veterinary technician, it is a very demanding job: physically, mentally and emotionally. I missed 18 days of work. If you work a M-F job, take Chemo on Thursday, work Friday, you'll poorly on Saturday, Sunday and Monday. You'll be back at work on Tuesday (sometimes Wednesday) and start feeling better and better. I did Taxotere, treatment was every three weeks so the time off wasn't terribly disruptive. Just think about it.
I will add that I found my breast lump six months before I actually addressed it because work was busy, the clinic was being sold and I didn't want to lose my job. I kept putting off having it checked. It likely cost me my life.
Work should not cost you your life. No job is worth that.
-
Her2 is a very different disease than her2 negative. Taking a pass on chemo has completely different ramifications depending on what type of cancer you have. Her2+ TNBC etc are more aggressive, have higher recurrence rates BUT they are also very responsive to chemo. This is s very important part of our treatment plan. We are lucky that we have great protocols that are PROVEN to lower recurrence. Yes not zero but I believe Herceptin + Chemo reduces your % by 50 %. Those are facts.
Like KayB said. Hecercrptin is given with chemo as this is shown how it's most effective
I wish vaccine trials/treatments were further along but we are not there
-
I agree with the knowledgeable posters above - Her2+ is an aggressive subtype and considering whether to do the chemo or not means considering a totally different set of factors than if one is Her2-. The reason chemo is given with targeted therapy, like Herceptin and Perjeta, is because it has been shown to work synergistically. There is not enough data yet available about the benefit derived by giving Herceptin only. It is not responsible to advise a vaccine trial as treatment, for several reasons. Currently trials for Her2+ are being investigated as a recurrence prevention administered after standard treatment is completed, you only have a 50/50 shot at being sorted into the vaccine arm - you will not know if you are getting the vaccine or the placebo, and not enough is known about efficacy - that is why these drugs are still in trials and not being offered as a treatment option to all Her2+ patients.
-
You are node-positive, HER2+ and young. All three unfavourable characteristics, at least on paper. I don't have more to add to what has already been said. Chemo is not as scary as it sounds, or looks in the movies. Of course some people do get serious side effects, but the majority manage well. And at least for early stage disease, there is an end date to chemo.
-
I hope she wssnt scared away.
-
Hi Meow13:
She may understandably be confused by the very different and conflicting feedback above. A newly diagnosed person may not be in a position to understand that your situation--diagnosed in your fifties, with hormone receptor-positive, HER2-negative, node-negative ("N0") disease-- and your decision-- which was made in light of those factors, is not really relevant to the situation of a person with HER2-positive, node-positive disease. The OncotypeDX test for invasive disease that you received provided you with information regarding the average 10-year risk of distant recurrence (incurable metastatic disease) that is associated with your Recurrence Score of 34, and you were able to consider that recurrence risk information in your treatment decision. In contrast, the OncotypeDX test is not offered to HER2-positive patients, as it is not validated in that setting not the least because the recurrence risk profile of HER2-positive disease is very different from that of HER2-negative disease. This fact may be a consideration in why there is a separate forum for HER2-positive disease. There is also a "triple-positive" thread for those who are ER+ PR+ HER2+.
I agree with the HER2+ members above. This would appear to be a situation in which chemotherapy plus HER2-targeted therapy is warranted under all applicable treatment guidelines for breast cancer (e.g., NCCN, ASCO), based on significant reduction in recurrence risks and improved survival benefit shown in clinical trials.
Adjuvant pertuzumab (Perjeta, "P") and ovarian suppression (Lupron) plus an AI (Femara) for 10-years are recommended to premenopausal, HER2+ women with higher recurrence risk profiles. In such situations, chemotherapy plus HER2-targeted therapy cannot be viewed as "unnecessary", as the benefits of this potentially life-saving regimen significantly outweigh the potential risks.
Hi Aleigh36:
If you are not clear on the substantial benefits offered by the recommended regimen, please ask your medical oncologist to explain it to you again. Many members are going through similar treatments, and you will find a lot of support here.
Triple-positive thread: https://community.breastcancer.org/forum/80/topics/764183?page=1007#idx_30200
Best,
BarredOwl
-
Thank you BarredOwl.As a HER2+ woman going in for my first surgical consult next week, your post was very timely for me.
-
Hi joyandpiece:
I'm not sure what your diagnosis is, and in case it may differ significantly from Aleigh's, please note that the guidelines for HER2+ disease may differ according to factors such as tumor histology (e.g., ductal, lobular, etc.), tumor size, lymph node status, and/or hormone receptor status. For example, for a very small, node-negative IDC, the NCCN guidelines may include chemotherapy plus trastuzumab either as an option ("+/-") or to "consider" (as opposed to an outright recommendation; e.g., a regimen of paclitaxel plus trastuzumab). The actual size of very small tumors may not be known until after the surgical pathology is available.
There is a thread for HER2+ microinvasive tumors (T1mi = Tumor ≤ 1 mm in greatest dimension) here:
https://community.breastcancer.org/forum/111/topics/748406?page=15#idx_438
There is a thread for HER2+ "T1a-size" tumors (T1a = Tumor > 1 mm but ≤ 5 mm (0.5 cm) in greatest dimension) here:
https://community.breastcancer.org/forum/80/topics/781897?page=21#idx_616
NOTE: The NCCN guidelines for both of these smaller HER2+ tumors were changed in late 2015, so the medical advice in the early parts of those threads may not reflect current practice.
If your tumor is very small, in due course, your medical oncologist ("MO") will provide case-specific information regarding your personal risk / benefit profile and treatment advice that accounts for these variations.
Some HER2-positive patients, especially those with larger tumors and/or who are node-positive, consult with a medical oncologist prior to surgery to discuss the possibility of systemic drug treatments administered before surgery ("neo-adjuvant" therapy).
Best,
BarredOwl
-
Thank you everyone for all the responses! I really appreciate everyone taking the time to give me their thoughts. It is super scary but your replies have helped give me perspective. My biggest fear is the side effects on my body & immune system; secondary cancer, etc. I've read a lot of negative things about the cancer industry & how chemo is recommended when it is not necessary and how the risks can outweigh the benefits. I've read a couple studies that show Herceptin may be favorable without chemo but that was only for small tumors, no nodes involved and the end of the studies said it needed more research. My biopsy came back as Her2 negative so the positive result from the mx results was unexpected. I started this journey saying there was no way I was taking chemo but I am a mother of young boys and certainly don't want to make the wrong choice.
-
So, are you now saying your tumor was Her-???
-
Yorkie, her biopsy was negative but her final path after mastectomy was positive
-
Aleigh,
No one wants to do chemo. But, I was pleasantly surprised by how manageable it was. I worked through chemo, and never got sick until after my 11th Taxol infusion. (My sons brought home a stomach virus from school, and it left me on the couch for a few days.)
You might want to look into chemo lite, Taxol + Herceptin + Perjeta if available. Herceptin is usually given with a taxane, but Taxol is supposed to be gentler than Taxotere (which has a very very very small chance of producing permanent hair loss). Your MO has recommended TCHP, I see. Does he/she seem like a flexible person who might consider chemo lite?
-
Chiming in on support for chemo. I always said I would never do chemo, but once they said Her2 positive, I did it. Minimal side effects, just stay as active as you can, and be on top of all side effects as quickly as they manifest. I worked, kept three grandchildren under the age of 5 two days a week all through chemo. I got folliculitis on my head, a few weird rashes, bloody butt a couple of times, hand and foot numbness, digestive track irritation, and mouth tasted like crap for about 4 days after each infusion. Having said that, it was doable, never had nausea, etc. Even rode my bike 3,007 miles last year during treatments and walked probably 500 more. They have great drugs now to manage side effects. It is no walk in the park, but I was surprised at how non-eventful it was, and the time passed by quickly. My last chemo was 16 months ago, last Herceptin 7 months ago. I feel entirely normal now.
You've got this! Don't let horror stories scare you. Most people do just fine. Hugs!
-
Taxotere has a 6% chance of permanent hair loss and there is currently a class action lawsuit saying the risks appear to be higher and patients were not properly informed. There is a BCO tread devoted to this. Taxol might be a better bet.
Barredowl, i do realize my situation is different and I did point that out. I dont appreciate your comments.
My intent was to have her look into the information for herself so she didnt feel like making decisions blindly.
Dont worry I wont comment anymore.
I think this is exactly the reason why people stop coming and feel like they cant express themselves. Be respectful of others. I'm not an idiot or uninformed.
-
Hi Meow13:
I intended no disrespect. My concern was one of potential misunderstanding by the OP, because I do not see any mention of your HER2 status (negative) in this thread and you have no visible profile information, so that would not be clear to the OP. (Most new members would not be able to infer HER2 status from receipt of an Oncotype test.) I agree that patients should not hesitate to ask for more information if they are uncertain, to better understand their personal risk profile, various treatment options and associated risk / benefit, and reasons why their medical oncologist sees any particular regimen(s) as preferred in their particular case.
BarredOwl
-
Melissa, that makes sense.
-
I posted a reply yesterday but I don't know where it went. My MO actually did say since I was resistant to chemo that I might be able to do taxol weekly for 12 weeks. But she said she's hesitant because the trial was only tested on post-menopausal women with tumors smaller than 3cm & no lymph node involvement. She said there is only 3yrs of data & she can't give Perjeta with it.
-
Do the chemo! I am 9 1/2 years out from the AC chemo, 8 1/2 years out from the end of herceptin and NED. You need to do all you can to knock the cancer out now so you can make a post like mine nine years from now.
-
There are trade-offs down the road for any choice you make. What makes it especially difficult is that chemo was introduced decades ago as the only option beyond surgery that resulted in any life extension, even though it only produced that extension for the few. It was better than nothing. As a result, even as poor as the results were, it became the standard treatment that everything else has to be compared with, whether or not some other treatment would work better than adding chemo, if used with an intact immune system.
I did chemo as a stage 1 HER2+++ ER/PR positive, but do have some regrets. What I find most offensive about it is that it is portrayed as something that "wipes out cancer cells", which tends to influence people who are terrified of cancer. When it works, it slows metabolism, and whether that causes more cancer cells to go on to die rather than continue to cause havoc is different from the vision of "wiping out" cancer cells. It doesn't work as well for those who are younger and whose metabolism is not as slow as those who are older and menopausal. The primary effect of chemo for me was to slow my metabolism, and that may or may not have resulted in no recurrence to date, as a HER2+++, ER+/PR+ who never smoked and rarely drank and had been of normal BMI at time of diagnosis. Factor in any additional morbidity risks you have -- or don't have.
At 14 years out with no recurrence, I am now "old" at age 65. After chemo, I tried to deal with the weight gain by going back to jumping rope 30 minutes a day (something I did only 3 times a week prior to chemo to stay trim but after chemo 3 times a week wasn't enough). I didn't realize that the extreme drying effect by the loss of estrogen and the lower level of testosterone (which is part of maintaining muscle mass) would damage my ankles. Out of nowhere, I developed one hip with arthritis that then resulted in damage to that knee. Using a trampoline is out of the question, as is walking very far (which I was used to doing prior to tx). There simply isn't the level of lubrication after "chemopause" in the body to deal with it for someone in their 50's.
I never had Herceptin, and did not do an AI, but I did do tamoxifen for 1 3/4 years.
-
Aleigh36;Here is a Journal which might be helpful in your decision making.I am facing the same. Adjuvant Paclitaxel and Trastuzumab for Node-Negative, HER2 ...www.nejm.org/doi/full/10.../NEJMoa1406281Jan 8, 2015 - Original Article from The New England Journal of Medicine — Adjuvant Paclitaxel and Trastuzumab for Node-Negative, HER2-Positive Breast ...I also have a healthy fear of highly toxic chemicals being main lined into my body, via a port placed just centimeters from my heart. So when I was dx'd 7 years ago with er+/pr+her2-, stage 2b, n0,m0 bc, I said "no thanks" to chemo and had a left mastectomy with Tamoxifen for 5 years. Two months ago, during a regular mamo screening a small (.9cm) mass was found. I had another mastectomy, and my plan was to forgo chemo and opt for hormone treatment only. Alas, the F#*#ng thing is her2+ and that is a huge game changer for me. After an exhaustive, eye bleeding, journal scouring search for more info, I came across several studies that indicate that HER2+ is not something I want to leave to chance. So, I consulted with a trusted oncologist, the one who agreed with me the first time around (no chemo). She recommends that I do 12 weekly doses of Taxol and Herceptin, followed by 9 more months of Herceptin. I trust her - for an oncologist, she's not entirely pro-chemo. The port goes in Tuesday and I will sleep better knowing that I will do/have done everything I can to prevent this aggressive, MF($@g, disease from attacking me again. In case you lost count, I don't have any more breasts to throw at this disease. If I don't at least try to eradicate it now, it might come back in a part of my body that I really need ala, brain, lungs, liver, etc. So, I am setting aside my fear and dislike of toxins in my body and am going to embrace Taxol. If I have any of the nasty side effects, I will simply reason my way through by reminding myself that it's either a little bit of discomfort now, or my brain or lungs later. All my research kept coming back to the same thing: early stage, no lymph nodes, clear margins, and mastectomy - I should be ok without chemo, right?Yet in the back of my head, or was it the pit of my stomach, the same message kept coming up "yeah, but it's HER2+"...yeah, but it's HER2+.Ah shit, hook me up. I want to make sure I kill it before it has a chance to regroup.BTW ladies, I am going to try the Dignicap, an auto type of cold cap.I'll keep you all posted in case it works!https://www.dignicap.com/
-
P.S. To some degree chemo is self-defeating for those whose metabolism does slow down a lot, which would be protective, except that the more it slows down, the more difficult it becomes to avoid weight gain, which adds estrogen (and makes exercising more difficult), which then raises the risks for recurrence. (Those who have the least trouble exercising off the fat may actually still have a faster metabolism even after chemo with a higher risk, -- but that is just speculation on my part.)
-
sounds like you used good judgement and sound reasoning- sorry this time it is leading you to chemo. I have a dmx next week, hoping for clear sentinel nodes and plan to NOT do chemo (HER2-) but might be given an overwhelmingly good reason once the pathologist has all the results. Very confusing. Best wishes for best outcome . . .
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team