HER2+, HR +, Stage I

MtnHiker

Diagnosed in December with Stage I Invasive Ductal Carcinoma with Focal Mucinous features

I met with the Oncologist on 1/18 who is suggesting the following treatment. Note that chemotherapy is not being recommended as recent study for my age group (70-80) suggests the 3-year survival rate is not significantly increased by adding Chemo.

• Lumpectomy
• Radiation
• Immunotherapy - Herceptin - 1 year
• Hormone therapy - TBD

Has anyone else been told that Chemo can be skipped?

Herceptin is a 1-year, once every 3 weeks, infusion where a port is being recommended. What difficulties has anyone experienced with having a port for such a long time?

What side affects have been encountered with the use of Herceptin?

ElaineTherese

Hi!

I was 46 when I was diagnosed with Grade 3, ER+/PR+/HER2+ cancer. So, no, I was not told that chemo could be skipped. As you can see from my signature, I did AC X 4 and Taxol (+ Herceptin + Perjeta) X 12. From what I gather, Herceptin (which is targeted therapy) is more effective when given with chemo so most HER2+ breast cancer patients receive it with chemo at the beginning and then proceed to finish the year doing Herceptin alone.

Personally, I had no side effects from Herceptin alone. Many do get a drippy nose while on Herceptin, though.

Many older women do get chemo for HER2+ breast cancer; if you are in good health otherwise, I would consider it. However, if you have pre-existing conditions and your health is poor, skipping chemo might actually be the better choice.

I have had a port since June 2014 and I love it. I go to the oncologist once a month for a Zoladex shot (puts me in menopause so I can take an aromatase inhibitor), and I just get it flushed then. My oncologist keeps nagging me about getting it removed. Maybe, I will when I'm ten years out. Otherwise, I'm just being superstitious. I worry that if I remove the port, the cancer will come back and I will need a new one. Silly me!

MinusTwo

Mtn - I'm surprised that your doc is not recommending neo-adjuvant chemo since you are HER2+. That does make a difference. Perhaps that's based on the strength level of your HER2 tests?? Also it was my understanding that Herceptin works best when it is combined for a "kick-start" with Taxotere or Taxol. I started chemo at 70, and that wasn't a problem. You don't say where you are located, but it might be a good idea to get a second opinion.

Seconding Elaine about the port. I loved my port and kept it for 4 years with no problems.

MtnHiker

Thank you Elaine for your response. It defiantly eases my mind regarding the port.

My Oncologist is basing her decision on a study where patients within the target age group of 70-80 with Stage I IDC without lymphatic infiltration showed the same life expectation after 3 years. I personally feel 3 years is not long enough to really know and will be following up on this. On the other hand being able to avoid the toxic affects of chemo does appeal to me.

MtnHiker

MinusTwo

I also thank you for your inquiry regarding why dropping chemo is being made and your affirmation in having the port.

rainne88

i also have Invasive Ductal Carcinoma stage 1a age 66 er+pr-hers+ and i have to have chemo radiation and armidiex. but we caught it in time go in tomorrow for a reensionto check margins.

MinusTwo

rainne - SInce you are HER2+,yes that does involve chemo - and usually before any more surgery. Have you talked to an oncologist? Once it's determined you need chemo, that is the doc that drives the bus. Well, good luck tomorrow. Hope all goes well.

MtnHiker

Thank you for your response. It is my oncologist who thinks I am a good candidate for Herceptin without chemo based on the RESPECT study. This study shows a 3-year survival rate of 89.5% vs 93.8% for Herceptin + Chemo.

Cowgirl13

MtnHiker, my chemo (I was 63 at the time--now that seems young!) wasn't that difficult and I had my port in for one year and then Had it ripped out (so to speak) 3 days after my last chemo. No, I did not consult my oncologist about it--I didn't know that was in his purview! He was a little surprised! If it were me, I'd be more comfortable with a study that lasted longer then 3 years but then again, treatment has changed since I went thru it in 2009. Good luck.

I've included a link for an editorial, "Are We RESPECTing Older Patients With Breast Cancer?" ,in the American Society of Clinical Oncology (ASCO) Journal. ASCO is highly regarded. There is really good information in this editorial. This is from the summary:

"To conclude, on the basis of the results of the RESPECT trial, it is possible to consider that adjuvant trastuzumab monotherapy could be an option for a subset of patients, particularly those who may have a higher risk of toxicity with chemotherapy and those with a lower anatomic risk of disease recurrence (stages I or IIA). It is important to stress, however, that the choice of therapy in older patients should never be made on the basis of age alone. Comprehensive geriatric assessment is the standard of care for evaluation before chemotherapy and should generate a care plan to be implemented during treatment to minimize the risk of complications and maintain QoL and functionality."

rainne88

sreension went well dr very confidence everything is out. will be on taxol and ogilvri starting feb 8 x12. then just ogilvri every 3 weeks and amidrex

Racheldog

MtnHiker your pathology is similar to mine IDC, Stage 1b, small screen detected tumor, 0 nodes, margins clear. I may be older than you (I am 68) and I have done 2 rounds of Kadcyla so far. This second one was rough. I live alone and usually am tough as nails but feeling so bad, no appetite, losing weight fast, etc. has been scary. I posed that question of Herceptin only and was told there is no data for that?

Honestly, quality of life and functioning is important to me. I saw a University based oncologist for a 2nd opinion who I love but that infusion center is too far away. If peripheral neuropathy or heart failure becomes an issue , I will stop chemo. Sometimes I think oncologists treat the diagnosis and not the patient. I want to hear more about equal statistics in older women having to bear the toxic effects of chemo heading into the 70's vs. perhaps whole breast radiation and aromatase inhibitors as the plan if you cannot tolerate chemo. I would love to hear if others have done just Herceptin (which can also cause changes in cardiac echo) for HER2+ and how you have done? Such a risk/benefit to all of this for each modality, when older.

MinusTwo

Rachael - I was told that while Herceptin may cause heart issues while you're actively talking the drug, the issues resolve once you stop. Good to be having regular Echos though.

That was unlike Adriamycin, where the heart damage may be permanent.

Oh - and I was 70 when I started chemo

Racheldog

Wow, you give me some hope that "older" ladies survive this chemo journey. I hope you have been doing well!! Thank you.

Racheldog

Mtnhiker: you are exactly where I am but I asked if I could only do Herceptin and there is "no data." I saw the same stats as you quoted and I, too, am 68, heading to 69 and having a rough time on two infusions of Kadcyla. Predict Breast calculator (not sure how reliable) quotes those same percentages at 3 years. I am stage 1b, NOMO but the darn Her2+

Did you proceed with just Herceptin or skip chemo all together?

MtnHiker

Cowgirl, thank you for posting the RESPECT study for everyone to read and to the others posting such honest description of your diagnosis and treatment. I will be getting another opinion from a different oncologist/organization prior to making a final decision along with waiting to see how the pathology from the upcoming lumpectomy surgery scheduled for 2/24 turns out. Everything could change.

MtnHiker

Wow, it's been a while since I have updated my status.

l had a lumpectomy on 2/24 resulting in clear margins and benign lymph nodes. Yea!
Started Herceptin Treatment once every three weeks along with daily Radiation. So far so good! For the radiation I'm being advised to use Miaderm radiation cream and/or Aquaphor to keep the breast tissue healthy. What creams are others using that they can recommend?

VioletKali

I am 32 and had an awful time with chemo and quit early. If I had a recurrence I would never do chemo again, so for sure at age 70 it would be a H e double hockey sticks NO..

I am young and have had lingering chemo effects to this day! I couldn't imagine being 77 and dealing with after effects, etc, after 7 years like I am now. I want to be on a boat or cruising my RV and go out with a bang.

Racheldog

Violet, you are similar to me in path reports and so glad to hear that you are out 7 years with Her2+. I opted for lumpectomy and often wish I had just done bilateral mastectomy--although I still have time to make that decision. I last posted in February. I did two more rounds of Kadcyla and became very sick after the 4th infusion. Lung issues! Never had any asthma or lung issues my whole life and have been a lifetime non smoker. No way was I going to continue. I quit Kadcyla. I have been off that for 4 weeks and after a Pulmonologist appointment ad CT am just now starting to improve and feel normal again. This is my life and you have to draw the line. No way was I going to risk being a pulmonary cripple for the rest of my life. I may re-challenge the Herceptin only as mono therapy for a few more cycles as has been suggested but if any issues I will quit, period. Go on to radiation. Not looking forward to the Aromatase inhibitors either.

I had a good path report, caught early but this lousy Her2+. The treatment with these drugs is worse than the diagnosis and side effects.