If you are not Stage IV but have questions, you may post here

hello. my dear friend was diagnosed with stage 4 june 2015. since then it's been a roller coaster from hospice in 2015 to travel in 2016 to brain mets and WBRT in march of 2017 -- she will be a 3 yr survivor in june.. she had a stroke Monday.. I'm her person. we were colleagues and neither of us are married (she is a widow). She moved in with me, I retired early and I watch out for her, take her to appointments. We are the best of friends. And I am so very sad right now....the stroke happened this past monday, it's taken some of her umph...her speech, her quickness. I'm worried and can't sleep... I can't seem to find much on the internet about what happens now....she has been on a regimen of herceptin and tratruzamid (not sure of the spelling) every 3 weeks. She had a treatment last friday and then a stroke]Monday morning. That is when I noticed her speech slurring.

At the hospital I learned for the first time that WBRT increases the likelihood of stroke. Does anyone have experience with stage 4, brain mets, WBRT and stroke? What should I be doing? Usually I read up on any treatment options and pepper her docs with questions so she gets the best chance given the treatment options....but this time I feel like the wind got knocked out of me and I don't know quite what to do next. Haven't found anything online to help.

Any recent research on best next steps? Tips? Suggestions? Many thanks..

( Man, does cancer suck.)

Thank you Deanna. I sent her oncologist an email to get an appointment to discuss next steps. No one had said anything yet about her treatment cycle...to continue or take a break.

Your response was very helpful and a bright spot to my day. Thank you. Happy Easter too.

Beth

I have a question that hopefully I never have to find out the answer for myself.

What happens next in terms of treatment after a diagnosis of MBC?

I ask because before I was diagnosed with breast cancer I had little idea that treatment would start almost immediately and there would be so much and for so long. My life was fairly much on hold for the next nine or ten months. So I guess I am curious: how intense is treatment once you are metastatic?

jenjenl- I think that your MO will order some blood work and perhaps some sort of scan. Your pain does sound somewhat similar to what I experienced with liver mets. That being said, there are other things that might cause pain in the right upper quadrant, such as gallbladder issues. The umbilical hernia may have changed. The important thing is that this pain be investigated to rule out mets and that you feel satisfied. A PET scan is most likely the best way to do that. Best to you, MJH

Jenjenl, I agree with MJH that checking liver enzymes is a good idea, and also that there are other non-cancer possible causes for your pain. I would caution you not to rely only on the liver enzyme results as they can be in normal range even when there is a problem, as was the case with me. As far as scans, I first had an abdominal ultrasound, and when that showed a problem, I had a PET-CT.

tlundy, I'm so sorry about the depression you're experiencing. I have never taken Effexor, but I've never heard it associated with a bc recurrence either. I wouldn't worry about taking it if you need it. OTOH, I am very much pro natural healing and taking only meds that are absolutely needed, so the first question I would ask (and I am not a doctor, so just asking as a caring bc sister ... ), what has you feeling depressed, and is there anything you can do about it, including simple things like getting out in nature more, getting more exercise, meditation or music? I do believe a lack of estrogen can contribute to depression, but I'm not a fan of simply taking a med to cover up other possible things going on. JMO, but if you feel you truly need the med, I don't think you need to fear it increasing your risk of recurrence. Hugs, Deanna

hi,

I’ve posted about this once before but my concern has returned, iam almost 5 years out from diagnosis and I have small lump underarm just next to my implant. I found this over a year ago and had an ultrasound which didn’t show anything suspicious so I forgot about it, but I recently realized it’s still there and I think slightly bigger, it’s definitelu easier to locate now. Could my results have changed? I had a pet scan in December and all was clear, would it have shown up there if it was cancer?

Thanks so much for your feedback.

I am not sure if this is the best form for I am new. My wife is recently diagnosed with lobular breast cancer. We are pending scan results but there are indicators the cancer has spread. 2 oncologists agree that the cancer is not highly agreesive and the markers make it the most receptive to treatment. I am terrified, worried, and distraught. My dad passed away almost five years ago with cancer and can't believe this advanced cancer devolped in my wife. I am thankful there is a silver lining with the type of cancer she has. The mentioned anti estogen meds and a shot to stop menstruation. My wife is 43 and our kids are 16 and 14. Any advice to handle the stress of all this? Any words of hope? Thanks

Hello:

I've had cancer on the left breast, single MX, had surgery, rads, chemo, last rads were 01/31/17. I tried to eat healthy, avoid red meat, and sugar. The only thing is since middle of last year I took in 10 cats and spent lots of time cleaning and did not sleep at least 8 hours. I do not know if lack of sleep and stress cause me to recur but I just examine my right breast and there some swelling near my armpit. It's suddenly there bc I looks at the breasts everyday. I just had right breast cyst removal in July 2017 and ultrasound done at the time. The BS did a physical exam in November 2017 and recommend mammogram. However I was fearing radiation from mammogram and kept delaying it. If anyone had inputs I would appreciate. Thanks.

Jeremy, We are very sorry for all you and your wife are going through. The worry is really overwhelming.

We're all here for you!

Inks, I’m not an oncologist but I think that chemo will treat both TN and hormone-powered cells, especially if the growth rate is medium or fast. It just kills cancer without making too fine a distinction, you know? A resource you and your friend may be interested in reading is the NCCN guidelines for breast cancer, the IBC section.

Oh, wow. Did the genomics test look for a Her2 mutation (different from Her2 positive)? That could point the way to a drug like neratinib. And did the doctor order FISH and CISH to double-check for Her2 amplification? That would bring in the Her2 drugs like herceptin. Can she ask about trying the addition of an anti-estrogen? Some of these are not too expensive and the side effect profile is usually not too bad compared to chemo. Faslodex might be best. Otherwise an aromatase inhibitor or tamoxifen. And maybe a targeted therapy like Ibrance or Afinitor? Tumors can be heterogenous, so one biopsy may not tell the whole story. Are there clinical trials available to her, say immunotherapy such as keytruda? I'm just throwing out some ideas, here; I do not know tons about IBC. Will they consider surgery later if they can get it under control?

Jeremy.....I'm so sorry this has happened to your wife. As a Stage IV patient with extensive bone mets, diagnosed de novo (Stage IV from the beginning), my diagnosis was also a shock. Now, eighteen months later, I've worked through the various stages to acceptance. I think I have, anyway, it doesn't happen overnight. The truth sinks in very slowly, in stages. I was in denial for a long, long time and didn't look at the situation directly. If your wife appears to be doing this, my advice is to allow her to stay in Denial Land for as long as she needs to because it helps cushion the blow. Eventually, once she realises treatment is for the rest of her life, the reality of it will sink in bit by bit.

The best advice I can give you is to take it one moment at a time. Not even one day at a time; one moment, because your moods tend to swing wildly at the beginning.

Don't look too far into the future. The future is in your imagination and your mind can conjure up all sorts of worries that might or might not ever happen. Live completely and utterly in the present.

Be kind to each other. Give each other space and give each other support as and when needed. There might be times when your wife needs you desperately to be there with her and there might be times when she wants to be alone.

I cried a lot. If your wife does this let her. Tears are very healing. Sometimes she might need you for comfort and at others she might feel like a wounded animal and feel the need to be alone with her tears. I often go off on my own to have a little cry. My future is no longer the future I thought I would have.

If your wife has the most treatable form that's obviously a good thing but you need to be prepared that treatment is forever. There is no time off for good behaviour with metastatic breast cancer. Treatments have side effects and it takes a while to adjust to them. More so, it takes a long, long time to adjust your mind to the fact that if the cancer is metastatic it is incurable. It can be highly treatable but, at this stage, treatment is for life. There will be lots of scans and doctors' appointments and she will need help with those. She will need you or a trusted friend to go with her to appointments to take notes because it's impossible to remember everything we're told at an appointment.

But I return to my main belief that what works best at this stage is living in the present moment and refusing to think about what the future might hold. Thinking that it's best to be prepared for more bad news is not helpful. If you're given bad news you will cope better if you are emotionally stronger. Be optimistic and positive - you'll have that said to you a lot. If it's said by people who have never been where you are right now, it's a superficial bunch of words that are meaningless. If it's said to you by someone who is experiencing metastatic breast cancer it has deep meaning. It means live with the belief that all will be well, find anything you can that gives you moments of happiness and go with that, but believe with every fibre of your being that you will cope with this. Believing is different from just saying "be positive". This might sound strange at the moment but in time you will probably understand what I'm getting at.

You will be given a lot of advice by well meaning friends and you'll hear the same words over and over. Certain diets will be suggested, certain foods are said to "cure cancer", people will say "if there's anything I can do just let me know". Ignore the first two but when it comes to the last one, take them up on it. Have a list in your mind of the things you need help with and delegate them. Take all the help you can get. If you don't have anything they can do for you right now, you might later. People generally mean it when they say they want to help, so let them.

You asked for words of hope. There are a lot of women who have lived for many, many years with metastatic breast cancer. Especially the highly treatable kind. I expect to live until I die from old age.

A word of advice....if it is confirmed that there is metastasis, have a look for the appropriate thread in this forum. There are threads for the kind of medication used and threads for the organs that are affected, just to name two. Join into the conversation on those threads, make yourself known. You will be welcomed with open arms, kindness and a lot of support and knowledge.

I wish you and your wife strength, flexibility and love.

Hi jenjen1, my pain sounds similar. I have been dealing with it for months, I have been using cdb for pain control, it takes the edge off. At first my mo thought it was liver mets but ultrasound and liver function was normal. Bone scan was clear. My family doctor is stumped. I have a cat scan tomorrow. We don't have a pet scan here.

I hope all is well with you. Hard when we don't know cause. My doctor said he doesn't think it is anything serious that I just see cancer around every corner since I was so recently was diagnosed. This did not comfort me. I am thinking that if cat scan does not show cause then it must be from radiation.