Surgery, no drugs or rad

Andi, first let me say, I am so sorry you have had to become the expert you never wanted to be! I came across your post and I just wanted to say that I still enjoy sex very much. I have not found it to be any less wonderful, even during chemo. But I am not part of the group you are asking questions, as I did have all the works possible. I hope someone from the group you specified chimes in soon, and my thoughts are with you as you fight the beast. My best to you.

Hi, I chose conventional treatments (with no long term negative SEs in any area of life), so I can't advice you about declining whatever treatments will be recommended. I do want to say that I think it would be a good idea to wait and see what your pathology report says before making any definite decisions. Best of luck!

Wait for your pathology report and, then, ask tons of questions. If need be, seek a second opinion about your risks/benefits when it comes to chemotherapy and radiation. But don't make any final decisions before you have your pathology report, and you hear all the data and recommendations for your specific diagnosis.

I had a lumpectomy and SNB, but it turned out that I had one positive lymph node, so chemotherapy was a given. I wanted to avoid chemotherapy (who doesn't?), but my age and specific diagnosis meant that it was the better option for me. I, also, had radiation (which goes hand-in-hand with lumpectomy) and hormone treatment because I was hormone positive. Now, nearly four years out, I'm doing well, cycle 20-30 kms a week, enjoy a very active lifestyle, feel great, and still have mind-blowing sex with my husband of 24 years. Yes, that's probably TMI. Sorry.

So, my advice would be to keep being as informed as you can and - although it's hard - try to not make any decisions based on fear or impulse. Get a copy of your pathology report. Write down all the questions/concerns that you have, so that you can have them addressed during your consultation. Take someone with you to your consultation because a second pair of ears can be invaluable. I took my husband with me and he remembered tons of the things that were discussed that I didn't afterwards. Stay away from "Dr. Google"; much of the information on the internet can be out-of-date, unreliable, unsubstantiated and/or just plain misleading.

But, most of all, be kind to yourself and breathe. You'll get through this.

Andi ... I feel for you having to make these decisions.  It's a rough place to be in.  I just wanted to tell you that I had a lumpectomy and radiation for a Stage I tumor almost eight years ago.  I didn't have chemo or take any follow-up anti-hormonal medication.  My sex life is great.  In fact, it's much better now than it was before I got cancer. 

The only thing I would take a look at is the treatment options for an Her2 positive diagnosis.  I know that Her2 can be pretty aggressive.  What is the clinical trial for neoadjuvant treatment they want you to do?  Just curious.

I wish you all the best ... please stay close and let us know how you're doing.

hugs

Bren

I just want to comment on your statement that if your nodes are clear, you will probably forgo any other treatment.

While having clear nodes is always good, with HER2+ cancer it is not a guarantee that the cancer has not escaped the breast. HER2+ is very aggressive and cells can travel via the blood, not only the lymphatic system. With clear nodes, there is still a 1 in 4 (25%) chance that there are cells setting up housekeeping elsewhere in the body.

Also, you mentioned your grandmother's breast cancer metastasizing to the brain. This is also characteristic of HER2+ cancer.

Talk to your oncologist about your chances of recurrence. After my mastectomies , before chemo and herceptin, my chance of recurrence was 50%.

I'm so sorry you are dealing with this.

Like you I have a family history of BC, in fact I lost my mother to BC. Because of that I thought if very important to be tested for any genetic links/BRCA mutations due mostly to having daughters in their 20s and several nieces, but also to help with my decisions. After testing negative for any known genetic reasons for BC, choosing a lumpectomy was an easy choice. If I'd tested positive for BRCA I would have chosen differently. Given the family history you might wish to consider genetic testing and counseling prior to making any decisions. Because I had a lumpectomy, I had radiation treatment. While that was a very unpleasant experience for me, many go thru it w/out problems and I personally thought it worthwhile since I was and still am inclined not to do other therapies (hormones in my case/due to low oncotype, chemo was off the table early on) . My BC was on the left side so having RADs in the prone position was important to me. I told the RO to skip the supraclavical area out of concern for my thyroid- even when you choose conventional therapy, you can ask for (demand) modifications!

RADs are of pretty short duration, and generally don't effect quality of life or sex life. All reasons I've chosen no hormone therapy but I didn't have HER+ cancer and don't know enough to comment on how that might/should figure into your decision making.

Some of the best advice I got when first diagnosed was that BC is not an real emergency, like a severed artery. You have time to investigate, get second and third opinions. They told me my cancer had been growing for 5-8 years, so taking your time to explore options for a few weeks/a month or so won't hurt anything. I'd start with an oncotype and genetic tests. They will probably be very helpful to you in the decision making process-they were to me.

Thanks, like I said I know little about and haven't read much about Her+ cancers since mine isn't. Because my SIL was diagnosed with triple negative, I've read up on that as well, but pretty much skipped the Her+ stuff. We can only absorb so much!

It does seem the original poster may need to make choices a bit faster than many of us, but I still think second opinions, exploring various options and genetic testing for those w a family history are a good ideas.

Run, don't walk, from any MO who won't allow you to record your conversation. A good MD knows how much info they are throwing at you and that the recording will be a valuable tool. She sounds like a poor choice for you on other grounds as well.

Andi, you need to do what works for you but, as much of a 'medical minimalist' as I am, if I had Her-2+ pathology I would bite the bullet and do the chemo and Herceptin. Herceptin truly is something of a wonder drug for H2+ cancer and offers a really good chance of beating it.

You may want to read the history of the discovery of Herceptin both for insight into the characteristics of Her-2+ cancer AND to understand how Herceptin works with your body. (The in-fighting, delays, and jockeying for fame are eye-opening, too.) The title is: "HER-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer" by Robert Bazell. Most libraries have a copy, as may your cancer/breast care center and probably Amazon.

I wish you well with your decision making and treatment, Andi. I'm so sorry you're dealing with all this.

Hi, AndiCBC.

You wrote: Mastectomy, chemo, radiation, hormone therapy, targeted therapy... I feel like these will destroy the things I enjoy about my life - permanently, in some cases. Why would I do this?

Because if you're HER2+, you have an aggressive cancer. Find an MO that you're comfortable with and discuss the pros and cons.

Based on the information you've shared, it doesn't seem that you would need a mastectomy. Lucky you!

Andi, I agree with others here that you need to get a 2nd opinion ASAP, with an onc who is willing to talk to you properly and answer your questions.

I looked up the trial your onc wanted you on. The trial is designed to find out if estrogen-deprivation during chemo yields a higher "pCR" rate in patients. "pCR" is when the chemo kills all the cancer prior to surgery. So, you would get standard neo-adjuvant chemo, but one arm of the study would ALSO get estrogen-deprivation, while another arm would not (which is the standard way it is currently done). I would definitely want to know if your onc is involved in running the trial. I would also want to know exactly how this would benefit you personally as compared to current standard of care.

According to her website - in more than one place - Sherry did have surgery AND chemotherapy. She said she added alternative therapies in Mexico and said she "did not need radiation".

Interesting read.

Edited to add quote & remove the words "decided against radiation".

"AmyinSanDiego" seems to be spam. Really reprehensible since we are all here trying to basically save our lives while keeping our quality of life. I was reading here in expectation of my biopsy results for a possible recurrence, possibly a more aggressive cancer (surgeon thinks maybe it is). I like to plan ahead. Thank you everyone else for your incredibly insightful and kind replies to the OP; I'm sure she appreciates it, and it has helped me as well.