Feeling overwhelmed, depressed, hard time figuring out next steps

You've come to the right place. You're not the first person in the forum who struggled with depression, and everyone's here for each-other.

If you don't mind sharing, what kind of cancer are you living with? There are some subforums here for specific types of cancers where you might be able to get more-detailed information.

I was also disabled after my prostate cancer: spinal compression from a metastasis put me in a hospital bed for 3½ months, then a wheelchair, then a walker, then a cane. I understand your frustration: it was literally adding insult to injury, finding out I had stage four cancer, then finding out I wouldn't even be able to walk to enjoy the few years I had left.

(In fact, I was lucky; I initially expected to live only 3–5 years, but after 4 years I'm still in full remission and NED thanks to new treatments and miracle drugs, and have about 80% of my mobility back thanks to years of grinding physio; still, I didn't know any of that would happen when I was dealing with my new reality back in 2021).

@northoftheborder

It’s wonderful that you are doing better. Thank you for sharing your experience. It is inspiring to hear about you making such a good recovery during a time where you were uncertain of the outcome.

I have breast cancer then metastasized to a spot on my pelvic bone.

@anon0 That's really rough. These days, when there are just a few metastases, they often distinguish it as "oligometastatic" (literally, few metastases), and treat the cancer aggressively as if it can be cured, especially if the metastasis is to the bones (the jury's still out on whether a cure is possible, but they're at least seeing much-longer progression-free survival and better quality of life).

So if they gave you radiation to the metastasis on your pelvic bone, that's likely why. 5 or 10 years ago they would have just assumed the cancer was terminal when it metastasised, and focus on keeping you comfortable. Now, you have a choice, and a chance.

However, fighting oligometastatic cancer aggressively should be a patient choice, not something that just happens to you, because it can come with some tough side-effects. I was only 57, so I told them I wanted to fight, and my radiation oncologist promised to "throw the kitchen sink" at the cancer. I've had to deal with some tough side-effects, but I don't mind, because the treatments have given me my life back — next month I'll meet my first grandchild, something I never thought I'd live to see.

But not everyone wants to go through all this, especially if they're elderly or already have other serious illnesses. Your medical team should have explained the pros and cons of both paths to you and given you time to ask questions and decide what you wanted. If that didn't happen, that's unfair, and I'm so sorry.

@northoftheborder
Thank you for all the information. I didn’t know that! Did your side effects improve from the radiation? Or is it all the physical work that you have put into getting better? I try to walk better or do some of the physical therapy exercises. However, it doesn’t seem like it improves. It seems like it gets worse. And then I get very down like I’m in the same loop every day and can barely help myself even if I want to.

It sounds like my doctors back home were following the older method. They told me not to have surgery on my breast and to have only 1 radiation treatment. They said wait on the heavy duty chemo until there are no other options. I did take a lighter version of chemo which was still tiring but I could manage and didn’t lose my hair.

When I came here they said do the heavy chemo for life, over 15 radiation treatments plus cyber knife, bone strengthening infusion treatments and I’m sure they were going to suggest the works of medications. After the radiation and bone treatments I felt so sick. Actually my doctor back home told me that they don’t recommend the bone treatments for me either.

I haven’t been back there in well over a year. I was in so much pain, couldn’t walk and didn’t know how I could get myself to my appointments or walk to the the building manage it all on my own. After the damage was revealed from my radiation treatments the radiation department cut me off and told me to talk to my oncologist about everything. The radiation doctor said he was surprised that my hip joint had been damaged because it doesn’t usually reach that area. That’s all I heard but never got any suggestions on what to do about it. I went to an orthopedic surgeon who said they were supposed to refer me to him first before doing any radiation. I had to ask for a physical therapist. They never mentioned it. Several months ago I requested a surgery referral for my breast. They say I need a referral to speak to any breast surgeon. But never heard back from them for the referral. I thought perhaps they sent me a letter but I checked all my letters. I got nothing. I really don’t feel comfortable with this cancer center.

Anyway, thank you for letting me get that off my mind. It’s the first time I’ve really talked about it.

@anon0 I am so sorry to hear that. It took me two years to get most of my mobility back, but that was due mainly to the spinal compression, not the radiation (which probably helped remove the remnants of the tumour on my spine, after the emergency debulking surgery).

I suspect you're right that you have an oncology team embracing the newer practices now: they don't just assume you're dying because the cancer left your breast like your old care team was likely doing (just giving you a small palliative dose of radiation to ease the pain in your pelvis), but want to come in fighting.

That can be a good thing, but only if you want it and if your body can take it.

My experience is around prostate cancer. It has strong similarities to breast cancer (it's hormone-sensitive, has an affinity for bone metastases, and there have been huge advances in treatment over the past few years) — but there are likely big differences too, and not everything I'm saying might apply the same way.

I suggest also joining to the Breast Cancer subgroup here, and you'll probably get much better information specifically about your cancer. But please feel free to stay in this group too!
https://connect.mayoclinic.org/group/breast-cancer/

You sound overwhelmed. But after what you've gone thru I get it. I would ask for some thyroid bloodwork. I know cancer treatment can cause thyroid issues. Might be a good place to start.

Trusting your team/s is key in treatment and recovery! Maybe a second opinion of your not comfortable with current team.
My two main Dr's oncologist and Transplant Dr will answer any/all questions I have and do not push me into anything. When my transplant got postponed and started a new weekly treatment all was discussed on why we are going this direction. I'm luck to live 30 minutes from the hospital/Cancer Center. Be your own advocate- social workers can help a lot. Hugs to you!

@treehouse5437

Thank you. You’re really actually reminded me of the other thing that happened at the cancer center. I was really uncomfortable with my doctors dismissive manner. They have a group of several doctors to choose from. I called and asked to switch doctors. They said I need to tell them why and that I have to start some sort of form for them to review. I explained that I was uncomfortable with the doctor. They told me that he was going to review it and decide what I get to do. Then after waiting a long time with no treatment he said that I cannot go there. He wants me to go to the next cancer center over an hour away. I was upset hearing this because I would have to drive in the snow while feeling sick and can’t walk. So the receptionist told me I could contest it. After I contested it they finally gave me another doctor. It was a long process and I didn’t get treatment during that time.

@anon0 That's almost criminally-bad treatment. They were punishing you for exercising a basic patient right.

Is there a regulatory body down there in the U.S. that you could lodge a formal complaint with, or are you (understandably) worried about rocking the boat when they're so willing to abuse their power?

@northoftheborder

Thank you for the suggestion. I haven’t really looked into it. All I know is that I don’t feel right about multiple things that happened. I don’t think I want my name involved in challenging them because I’m trying to focus on where to get treatment now. I’ve read some few comments that people decided to go to another facility for treatment hours away or in the next state. I don’t know how they do that if they need chemo. Seems like it would be hard.