How soon treatment begins after de novo diagnosis

I would look at it like this: It is worth a two-week wait to get an opinion from a top place like Dana Farber. That is a very good thing. Your doctor will probably assure you that waiting two more weeks is not too risky as long as no bones are in immediate danger of breaking, and there is no indication this is a very fast-moving cancer. But I completely understand the feeling of wanting to do something right away! Use the time to check in on the things that will help you do well on treatment: diet, exercise, de-stressing, support, sleep. You can find good support here, including a thread for bone mets and one for younger women with stage iv.

Hi 42, I started my Ibrance/letrozole treatment the day after I first met with my oncologist and MBC de novo diagnosis was all but certain. My liver biopsy results came in 4 days later and confirmed the diagnosis. I understand being anxious to start treatment. I had a 2 week lag between doctor appointments, (knowing I had breast cancer but not yet knowing about mets) for scans and had to keep telling myself it wouldn’t have changed things. I have no idea how fast my cancer grew (it was termed as tiny but aggressive) or how long the mets were there, but for my own sanity I have to accept that starting treatment even one month sooner would not have headed off my MBC. Good luck with your second opinion and your treatment. I’m pretty new at this so I don’t have much advice, just offering my experience. Sucky diagnosis for all of us here.

Hi 42young. I can understand your concern, especially being recently diagnosed, however I don’t think a few weeks will be a problem. If you are anxious though, ask your MO about starting Tamoxifen. Given you are pre-menopausal and hormone receptor positive, that could very well be your first line treatment anyway. If Dana Farber has a different opinion on treatment, I don’t think a change would be a problem. I moved quickly from Tamoxifen to Xeloda. I know it’s a scary time, but new treatments are getting approved all the time. I’m a little over a year and a half since my diagnosis, and am fortunate that so far treatments have been manageable. Other than the odd bad day, I still do everything I did prior to my diagnosis.

Anna

A few weeks is unlikely to make much of a difference. Getting a second opinion is good and well worth it. I have had a bone met for 7+ years and lead a remarkably normal life, including being a grade 1 teacher. There’s a lot to be hopeful about

Hi 42Young-

We want to welcome you to our community here at BCO! We're so sorry you find yourself here, but as you can see from the responses and support you've already gotten, you are definitely in the right place as you begin down this road.

The Mods

i was a denovo dx in 2009...i was 43...it probably took 6 weeks to start treatment....tamoxifen....I went to Dana Farber three years ago for a2nd opinion. Great people. Hang in there

hi! I was diagnosed the week of my 40th bday, de novo.


I was very anxious to start the meds (Ibrance, lupron, letrozole and Xygeva) all at the same time and was worried about having intense side effects. So I worked with my MO and we made plan for me to start one med at a time, each about a week apart...that way I could see if any one thing caused a bad reaction and be able to isolate it.

Fortunately, I hadn’t minimal side effects - a couple odd things here and there like a couple small blistering spots on my chest and arms, mouth sores, fatigue, and some minimal stomach upset.

I took Valium and anti-nausea meds as needed guilt free during the process. Then, after a few months I realized I would be just fine without them...and only have needed occasionally.

Hope this info helps! My MO said we want to start sooner than later but offered me two weeks to decide which route I ultimately was going to go. At that time, I got a second opinion and did a bunch of research and soul searching (used a shaman) and spoke with my ND and got myself ready to start. It was a hurdle but I know now that I was reallllly freaking out. Very Normal to do!

Don’t worry if you’re freaking out, just know it will eventually shift and calm down.

42young, it was December 22, 2010 that I felt a large thickening in my breast. Like illimae, the holidays slowed down appointments/testing. It was first thought I was stage 2 since mri did not show any lymph node involvement, but my onc ordered a bone scan as a baseline for future comparison, and when that came back suspicious, a PET scan was ordered and it determined the bone metastases. I began neoadjuvant chemotherapy on February 16, 2011, which is chemo before surgery to see if it could shrink tumor so I could have a lumpectomy and not mastectomy. So treatment began just shy of two months since I first felt the lump.

It’s easy to do the math and see that I’m 8+ years dealing with mbc. After six rounds of chemo, I had lumpectomy, then radiation for 33 days in a row (minus weekends) and have been stable on Arimidex since then.

I agree with the advice not to consult Dr. Google. I preferred reading current books on the matter (Anticancer had just been published and I devoured it) as well as inspiring books such as Radical Remission, and Mind Over Medicine,—all written by doctors, and The Blue Zones, a well researched best seller that reports on areas in the world where people live longest and why that is thought to be. All the books are chock full of great hope and advice on complimentary ways to address disease.

Best wishes to you. Glad you found this forum, it’s a lifeline.

Even though it's unlikely to make a difference, it's very hard to relax waiting for treatment to start. You will feel a lot better when it starts. It's definitely worth it for the 2nd opinion.

Divine, if you have not read it, I highly recommend How to Starve Cancer by Jane McClelland. Very glad to see you doing so well for so long. 

I did Lupron injections for about 4 months. My MO didn't think my estrogen levels were dropping fast enough on it, so he asked that I have my ovaries removed. The surgery to just remove my ovaries led to a complete hyster because of undiagnosed endometriosis making just ovary removal impossible.

At any rate, I was place on Arimidex following the hyster and have been on it since 2016. I've had no problems and continue to remain NED.

Good luck with your appointment at Dana Farber!

Hi 42young, so sorry you are here.

I’m new to Stage IV as well. I was originally diagnosed IIB at age 31 in 2013.

We assumed my cancer was still HR+. So I started treatment right away.

My MO called me on a Friday afternoon telling me results over the phone on 12/7/18. I saw him first thing Monday morning. He gave me xgeva, zoladex, Ibrance and letrozole.

I had my bone biopsy on 12/20/18 I got the results in January of this year. I was still HR+ and my treatment hasn’t changed.

I agree with everyone that two weeks won’t make a difference.

Hang in there

Don't be nervous. I sailed through 4 years of that treatment. One year included Ibrance. As things (SEs) come you figure out how to handle them. Consider the first month (or two) a shake-out period. Don't make any major decisions on coping with treatment until then.

Oh, and keep the back of your neck cool. [That's the best thing for hot flushes]. WIth luck you'll have them like I did. . .get warm every so often for a couple of minutes. . .. rather than a friend who would feel like she was in a 5000 degree bake oven for two minutes.

Every woman is different. You may never see the standard side-effects. Or you may have the MO say one day "I've never seen THAT before!"

The best of luck and I hope it kills the mets and keeps them away a loooong time.

Hi all,

Stage IV ILBC Left Mx Aug 1st 2018...2 rounds of Chemo 9/20 & 10/4...had to stop. Severe thyphlitis infection and neutropenia. In hosp a week and thru a Ct found out I was stage IV (bone Mets)

Started Anastrozole Dec 14th. Minimal side effects so far. I have had a bottle of Ibrance for 2 weeks and still haven't taken it.

My poor family is freaking out with fear of losing me to this dread disease and they feel from what doctors have stated, that without treatment we could see see progression in a years time and be on the down slide.

I feel well and do most everything I did prior to DX. And, Of course I want to live but these decisions are just not easy.

Could anyone share their experience as far as how you take both medicines? I was told to take Ibrance with a meal and Anastrozole doesn't matter. I have been taking the AI in AM.

Is there any benefit of taking them at different times in the day?

I guess the Valentine I will give myself and family and MO is I start taking this today. So I am making a big red heart and putting this tiny white pill in the middle and texting it to my family.

Thanking everyone on these sites for the info that helps us all as we travel this very bumpy road.

Like others have said, the extra wait time will be okay. Anything that might grow will be handled by the treatment. Hopefully though it's just a slow growing, lazy type of cancer.

I would, however, strongly suggest you use this time to get to the dentist for a good cleaning and take care of any dental work that may be needed. One of the contraindications for a med you are likely to start (a bisophosponate or bone strengthener called Xgeva or Zometa) is dental work below the bone.

If you have only the spot in your hip, it may be worth discussing with your second opinion doc "Oligometastatic patients" (meaning those with fewer than 3 or 4 met sites concentrated in one organ or the bones, although the definition can vary) and whether it's worth radiating that met before you start longterm treatment. When I was dx 3 years ago, my met was in my acetabulum (hip) and I was at risk for fracture so they radiated it. My MO said they would have radiated it anyway with curative aim. I've been no evidence of disease since.

When you're ready, come visit the Bone Mets thread. I think you'll find it to be a great place for questions, support, and stories.