TRIPLE POSITIVE GROUP

I am older than many of you. My child-birthin' days are long gone.

My choice for a robotic hysterectomy started with my GYN. My husband and I met with him right after diagnosis. He said, "If you were my wife, I take everything. To leave anything would be medical malpractice."

With the robotic approach my recovery was easy. I did have lifting and exercise restrictions.

When I awoke from the surgery I had great peace. I knew I had removed body parts that the cancer could have attacked. I did have benign growths on my uterus and tubes.

Vicky

I've gone back and forth about getting an oopherectomy. I've been doing Zoladex once a month for 2.5 years to suppress my ovaries, but don't want to do it for 7.5 more years.

I was premenopausal when I was diagnosed, but now I'm 50 and 51 is the average age of menopause. MO and I have talked about taking a 30 day break from Zoladex + Aromasin next March, and then testing my hormone levels to see if I am indeed in menopause.

My new OB/GYN is like my retired one -- she generally doesn't do oophs unless there's something wrong with the ovaries. Of course, I've never met her; I've just visited with her nurse practitioner. Oh well.

Once again, we all get different information and treatments. Yes, HapB & LTWJ, my MO said the same thing about bones, lungs, brain.

It really is a maze to figure everything out.

My MO wanted me to wait on EVERYTHING until he was thru with all my treatments under him. I said no. My body and I run this show. Treatments and options were not going to last for years. My Plastic Surgeon and GYN did consult my MO and get his OK that I was strong enough for my implant and hysterectomy surgeries.

Also, I knew my periods could restart while on Arimidex. I am too old to shop for Tampaxs at the grocery store. That was not going to happen either.

Vicky

deni1661

Thank you. I don't know if what I have done helps or not. Time well tell.

I have known my Gyn for at least a couple of decades. I trusted what he told me. The relationship with my MO started at diagnosis and we do not have the same level of trust. My Gyn also told me that I would not die from cancer. He said it may surface some place else but it won't be what I die from. I have no idea what all of that means. I just know my Gyn is extremely well respected and he has never steered me wrong.

Yes, without the women in this forum I would have been lost on this journey.

Vicky

suburbs my genetic testing was negative too

And my oncologist recommended oophorectomy

Suburbs, this is what I have been told too, I will proceed with genetic testing the next week. If one tests positive for the certain genes there is a risk of developing ovarian cancer, and the ovaries can be removed, but there is no larger risk for developing uterus or cervix cancers, the latter is caused by virus. The removal of ovaries to supress the hormons is not a common practice here because the body still produces enough ER on its own. I think SpecialK knows this subject, I remember a similar discussion.

Cherry

hapB: I am 39 years old

I am premenopausal

I was diagnosed with Stage I DCIS/IDC, Left breast, 1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ on November 7, 2016. I went through six rounds of Carboplatin (Paraplatin), Taxotere (docetaxel), and Herceptin and then 11 more Herceptin infusions. I am about to finish my last Herceptin infusion on November 10, 2017. I also had a lumpectomy in May 2017 and short course of radiation (16 treatments with 4 boost). I also currently started taking Tamoxifen in July 2017. I responded well to all of the treatments and even had a complete pathological response from the lab work from my lumpectomy. I had very few complications and feel 100% again.

I though that I was coming to the end of my year of treatment and now my oncologist is recommending that I start Nerlynx in December for a year. I am not sure if I should take it. The drug was just approved in July 2017 and I don't know what patients experience with it is. Is there anyone else that is HER2+ that has been perscriebed Nerlynx and can tell me what to expect if I decide to go on this drug regiment?

Hi all,

It's been a couple weeks since I've been on here; I find it a challenge to find that balance between wanting to be connected with all you ladies versus having that cancer radio playing 24/7.

I had an oophorectomy; my MO seemed ambivalent, so I made the decision. I was premenopausal, but barely. At 48, I knew I was just a few years away from natural menopause. For me, the decision came down to preferring to be on an AI versus Tamoxifen.

So I definitely get mouth sores on Letrazole. I will get Magic Mouthwash to deal with that.

Yesterday I met with a naturopathic oncologist. Basically, he is a specialist who definitely concurs with conventional medicine but offers ways to support and enhance treatment. When I get all his treatment recommendations, I can pass those along if you are interested. While he did offer some basic diet tips, he also said that there isn't any evidence supporting the idea that diet has a great deal of influence in prevention of recurrence. That said, a healthy diet is still important. It certainly is important for hormone positive women who are heavier. In that way, it is important. He said that for me, exercise is key. He also talked about a fast mimicking approach, whereby for one week out of every 4-6, I eat 500 calories daily. I will do that. It's a system reboot thing. Not sure if any of you read the recent article about B12, but there might be reason to lower your intake of that.

Hapb, how horrible about your car accident; what a totally terrifying experience! But I'm so glad you were mostly unscathed. Unbelievable.

I hope everyone is well

Poseygirl, yes, definitely want to hear about your complimentary treatment. Also, my medical team says the same thing about diet. A good diet is a good thing but it will not prevent a recurrence. On the other hand, the nutritionists and other BC organizations are advocating a clean vegan lifestyle and no alcohol. I find the whole topic to be very frustrating.

norsken82070, nerlynx crosses the blood brain barrier, whereas Herceptin does not, that is unless you have a special port in your head and have it administered. There are side effects but frankly after TCHP and a BMX and immediate DIEP reconstruction, I feel like anything else would be a walk in the park. I am planning on trying it after Herceptin. I had to put this idea in front of my MO more than once along with my reasoning in order to come to an agreement to proceed. Just as an aside, I think having a good rapport with your MO as well as trust goes a long way in making this ordeal tolerable. I want to throw everything at this cancer now, and not look back with regrets.

On the removal of ovaries topic, thanks for all the additional comments and feedback. I will ask again. My guess is the answer is different for someone in their 50s vs. 30s or 40s and personal medical history must be taken into account.

Yes, yes on the 24/7 cancer radio. I am tired of hearing myself talk about my cancer and treatments so I am sure everyone around me is as well

Norsken, are you in US? You are not in Norway by any chance?

You have been offered a bit different treatment schedule with doing chemo prior to surgery. I thought neoadjuvant treatment is usually given for larger tumors. At least this is the way they do it where I live, I am from Sweden. I have been told that I cannot get Nerlynx, the SE are not worth the benefits but I am just like everybody else here and want to throw everything they can offer Cherry

Hello everyone

Like coachvicky I have been diagnosed with bilateral grade 3 cancer IDC

Right side is 2cm or just above according to MRI ER8 HER2 positive

Left is .9mm ER7 HER2 negative.

Lumps were seen on mammogram 12 September and got results of biopsies 28/09. MRI 13th October. Since 28/09 I got an appointment at The Royal Marsden specialist cancer hospital but they have been unable to offer me a treatment plan because my local breast unit has taken so long to forward my tissue samples for them to complete their own tests,. So I am scheduled for two lumpectomies on Wednesday since the Marsden will be at least another two/three weeks to give me a treatment plan. My plan from Worthing is surgery, chemo 6 months, Herceptin 1 year, radiation to both breasts and hormone therapy since I am 53 and pre-menopausal. The consultant at the Marsden said the Herceptin and chemo may not work because I have such high ER markers of 7 and 8. It feels very disheartening and I am doubly anxious that I have 2 grade 3 tumours. I was wondering if any of you have had issues of chemo or HER2 therapies not working because of high ER scores.

Also I understand there is difficulty filling dents left by the surgery if you have radiation which they say I must?

I am anxious that with 2 grade 3 tumours and HER2 it sounds so aggressive and I would love to hear positive experiences and those who have had chemo/her work despite high ER scores

Best wishes to you all

My MO said I could do Nerlynx if I wanted it, and she offered to prescribe it. But, she didn't advise it. In fact, she rolled her eyes when I brought up Nerlynx. She just said the benefits weren't significant enough to recommend it.

Norsken - congrats on the great response you had to treatment. My MO advised against Nerlynx because side effects outweigh benefits specifically for my case since I responded well to just the HP. I think this is a situation where it may be good for some but not others.

Poseygirl- I'm definitely interested in what your naturopath suggests. Thanks for sharing. I have read about the fasting and try to eat only during certain hours of the day. I read fasting helps clear toxins from your liver. I would like to hear more about the reboot diet. My MO, BS and PS all said maintaining a healthy weight, eliminate stress and build a strong immune system was my best approach to avoid recurrence. Considering the broad range of advice on cancer diets I decided to eat healthy the majority of the time and no longer beat myself up when I allow myself a treat or glass of wine every now and then.

Hopelisa- sorry you find yourself here but this is a wonderful place for support and inspiration. I did not have radiation or chemo but others here can provide plenty of insight. I did a full year of Herceptin and Perjeta infusions and had a Unilateral mastectomy plus DIEP reconstruction in May. I had a good response to treatment and am currently NED. I am very happy with how my recon turned out. I changed my diet and lifestyle after diagnosis, lost 40 pounds. Side effects from letrazole are annoying but manageable. I have a greater appreciation for life and am in a much better place spiritually and emotionally. That's my positive. Best wishes for a quick recovery from your upcoming surgery and strength as you move forward with treatments. Sending hugs

I don't talk about cancer to anyone except here and several other online groups. The support and info shared with other cancer warriors inspires me and provides understanding that I can't find anywhere else. I'm afraid my family and friends have moved on which is fine with me. I thinks it's important to find a healthy balance and not let cancer consume your life but it is comforting to know support is available 24/7 when you need it.

Hap, the Nerlynx study did show statistical significance, which means the outcome was not due to chance, but the overall benefit doesn’t outweigh the nasty side effects