Just Diagnosed with Recurrence and Don't want Treatment

bimmer2011, I know the news of metastasis is shocking and you must be reeling with emotions of fear and anxiery but treatments have improved greatly and you can beat this! There are women who have battled through metastasis to bones and with organ involvement for years. Don't despair, I'm sure your oncologist will propose a treatment plan that will get things under control for you. Sending you positive thoughts and best wishes, Annie

Dear Lynsie,  the diagnosis of mets is a major shock.  MAJOR.  It takes some time (weeks, months!) to get used to the idea.  Please don't make any decisions yet.

The treatments for mets are much milder than for earlier stage cancer.  The oncs like to do the least they can do to keep your quality of life as good as possible.  For instance, if you have ER+ cancer you'll take an anti-hormonal pill, most likely.  For many women those have next to no side effects. 

Whether or not you have treatment is ultimately up to you, though you may want to allow your husband input.  And I'm not trying to talk you into treatment.  All I'm saying is that you've had a major life event.  It's like when a spouse dies and the remaining spouse [who is in shock] gives everything away and sells the house, etc.

I've met women who have been living with mets for 15+ years.  I myself have been at this two years and my life has barely changed.  I still work full time and do everything I used to.  I don't expect to die for a good long time.

You get to decide what you're willing to live with.  My recommendation to you is to ask your onc what treatment he/she wants to start you on.  Do some research.  If it has mild side-effects, try it until life calms down enough that you can make this decision.  If whatever you try has effects you can't live with, try something else or give it up.

hi Bimmer,

A mets diagnosis is like a punch in the gut. Please wait until your appointment to make any decisions. There are so many here who are living very good lives with MBC (almost 4 years myself and my life is almost normal). Will the "inevitable" happen? Probably, but you can do a lot of living before it does. As for treatments, they may not be what you imagine. At this point, try to take it a day at a time and don't put your foot in the grave yet

I don't blame you for being angry or upset but I think you should give your self a shot at the treatment and then make a decision.  Best wishes to you. 

Hi Bimmer, like Holeinone said mets to lymph nodes is what most of us in the stage III group have from the start. This is still considered early stage breast cancer unless mets were found in bones or distant organs too. From your original post, this does not appear to be the case. I understand that the word mets is a shock in itself but please talk to your MO about the details. It may very well be different from what you are imagining.

I am so glad that Deanna mentioned immunology (when I have my down moments - actually days - my husband will say what if there is a cure and you just missed it),  you just never know what the next couple of years may bring (I do hope you change your mind.).

kayb: she indicated that the recurrence is in her opposite axilla. That's called Contralateral Axillary Metastasis (CAM), and has different implications than a recurrence to the ipsilateral (same side) axilla.

Bimmer: I'm so sorry, but please get all of the info on your situation that you can. CAM is very unusual and can be the result of altered lymphatic drainage from the primary treatment rather than a recurrence/mets that is more aggressive in nature and showing up in distant areas. Though most MO's do consider CAM to mean Stage IV, if there are no other mets evident, many MO's will treat with a curative intent in case the CAM is the result of altered lymphatics of the breast. Also, because it is rare, please consider additional opinions other than just your current MO. Many docs never see a case of it.

Bimmer,

So glad that you're going to the appointment with an open mind. Will someone be with you? It is helpful to have another set of ears, but if you're going alone, consider recording the appointment. Also, write down any questions you have so that you don't forget them. This is a lot to go through, so breath deeply.

As for the scan, may I suggest that your mo really needs the "full picture" to properly come up with a tx plan. Yes, something else might be found or it might not butnot knowing doesn't make it go away. I was dx'ed in 2011, several months after you. I was, essentially, stage IV from the start. I still work full time at a job I love, walked my younger dd down the aisle and have become a grandmother. I traveled to New Zealand and Australia and climbed the Harbour Bridge in Sydney. I'll be cruising to Alaska in June and have some great adventures planned. It hasn't all been roses, and the ride could end at any time but my life, my family and my friends make it worth it. You are not sparing the people you love anything by putting your foot in the grave before you have to. I'll be thinking of you.

wrenn, darling, that is simply my opinion.You know, as most here do, that my definition of support doesn't include telling people that whatever they want to do is just fine and dandy. I was under the impression that you had put me on ignore, but since you haven't, let's leave your distaste for me and the way I express myself out of bimmer's thread. I won't pursue this any further

Bimmer,

I am so sorry that you have a recurrence. As much as I have read, have had friends with stage iv, and try to educate myself, I know that even being stage iii doesn't scratch the surface of a recurrence with mets. There are so many wonderful ladies on the stage iv forums who have been where you are and have had to make some very tough decisions. Not meaning to dissuade you from posting here, I just know those ladies have traveled so many different paths and have education and resources and information to share with you as well as encouragement.

Gentle hugs and prayers for peace and discernment in the coming days.

Diana

GOOD LUCK TO YOU..... Sending LOVE.

Bimmer, I'm so sorry to hear about your recurrence. When I had my chest wall recurrence, we all thought it was stage IV. But my MO insisted on scans, we didn't see any distant mets. So they staged me as IIIB, with positive nodes. I had surgery to take it out of my chest muscles, and chemo and rads were no fun at all. But I'm still here, NED so far. Since your case is so unusual, you might want to try the scans. I had bone cancer as a teen, and now breast twice. I've always found knowing was better than not knowing. For me, anyway. Hope this helps, and best wishes to you. Other Amy

Bimmer,

So sorry you had to join the Stage IV club. You're right that treatment for Stage IV is typically to hold off the inevitable, but that palliative care can extend things for a long time, sometimes with great quality of life. Like you, my BC is ER+ and HER2- which a lot of the literature says is the type that responds well to treatment and can afford the patient a relatively long survival time. I'm 6+ years out from my stage IV diagnosis. I take two Tamoxifen pills daily and get Zometa once every 3 months. I work full time, go to the gym 4x a week (okay, not every week, but at least 3x a week), travel when I can. Please feel free to express yourself here, we understand. May I just encourage you to get all the information you need to make informed decisions about any-all-no treatments. I've found that getting multiple opinions helped me to solidify my decisions. Best to you, whatever you decide.

Hi, I am a 78 year old man with breast cancer the second time 12 years since the first time. I just started Ibrance and Faslodex to block the hormone receptor. I am stage 4. There is some reduction in my quality of life, My advice is to continue treatment. Your bravery will give future patients strength and conquer cancer. God Bless, Ken

hi Lynsie, how did things work out for you?