Help in EUROPE needed urgently

Holding you close Lily55 and praying for pain relief for you.

Trying to understand your situation.

It seems you are ILC, maybe triple negative?

Can you get nutrition via NG or PEG tube? Once your body stablizes, can a new biopsy be done to make there are no changes in your hormonal status? Also send for Foundation 1 or similar to check for genetic or hereditary mutations. Are there clinical trials where you live?

What have the scans shown? Are your labs stable? Can your body recover from current malnutrition? Hopefully, others with ILC and also triple negative can chime in with treatment options.

You sound like you want to live and just don't know where to start. Please know we are holding your hand in this virtual world.

Edited: I read later on your bio that you are hormonal positive. Were you ever on anti estrogen with or without a CK 4/6 targeted inhibitor? Could not understand some of your post.

S

lily,

I am sorry to hear of your situation. I have no guidance for you as I am in California but know that I am thinking of you. We’re about the same age

Lily55

Let's see if we can help you navigate this unbearably difficult situation. Are you a resident of Spain? Spanish citizen? You have bone metastases from your breast cancer?

It sounds like you are feeling very isolated and aren't getting answers. It sounds like a nightmare and I am so sorry to hear you are going through that! I also have several liver and bone mets but I haven't experienced the pain you have. Radiation is a palliative option to reduce pain from spine mets that they should offer you if appropriate. A gamma knife--hard to see how that would help your current condition. We are all, at stage IV, receiving palliative care, but that is not the same as end of life pain management.

You are obviously in terrible pain, so that's the first thing to focus on. Without being an expert I doubt that a flight to another country to do some intrusive procedure would lessen that pain, it sounds like just another horrible ordeal. The lung and liver lesions, though worrying, would seem to be less burdensome than your problems eating and pain from bone lesions.

The times I have had really bad pain I nearly went beserk. Everyone is different but heavy opiods were not my answer. It is super scary not being able to eat or drink but that is one thing that can be managed through your port. I've had periods just on fluids and IV nutrition for 6 weeks and got through it.

Do you have family or friends that can help you locally? if not maybe I can help from here in Sweden. You are not alone! Keep in touch and let us know how you are doing and how we can help. xo AMY

Lilly55, I am so sorry you are in such a nightmare situation, and it doesn't seem like your medical team is very supportive or communicative. Considering your weakened state from the prolonged eating problems, seems very unfair that you would have to be the one to search for answers and fight for your life. My first question is whether there is anyone you trust who can do the hard work for your - track down the members of the medical team, come with you to appointments, help you ask any questions you have and write down the answers for further review, get in touch with patient support resources, get recommendations for other hospitals, etc.

There are a couple of things in your situation that don't make a ton of sense, so I wonder if there are some things that the doctors have not communicated to you, or not communicated very clearly. I know that there's a tendency by some European doctors to "be gentle on the patients" by holding back some of the less positive information. It's not ideal and it leads to situations where the patient cannot understand what's going on and why the doctors are doing (or not doing) certain things - I get some of that feeling from your story.

I'm very puzzled that the doctors indicated that your vomiting is because of stomach paralysis from Fentanyl, and yet they didn't offer any treatment or any alternative nutrition solutions. And then a different doctor just out of the blue told you that you're too weak to be treated and you have two months left to live. This just does't make sense with one small liver met, one small lung met and a bunch of bone mets - it just doesn't seem like the amount of spread justifies the very pessimistic prognosis, unless there's something else that the doctors are worried about. I would want to find out what that is.

I see you have lobular breast cancer, and I wonder if there is a possibility that your symptoms are from cancer having spread to your GI tract, maybe causing a blockage. Perhaps your doctors don't think they can treat the GI blockage and they are avoiding discussing the situation with you - I'm not saying that they are right to think you can't be treated, and it's definitely not right to avoid an open discussion. Getting some clarity on what, exactly, is causing your GI distress and what steps (even palliative steps) can be taken to make it better would be high on the list of questions that need answering.

Second, you are treated as triple negative based on the results of a bone biopsy that showed weak ER positivity. Bone biopsies are not very reliable to determine hormone receptor status, because of the way the bone has to be treated before staining for receptors. Before writing you off as "too weak for more chemo", would it be possible to get a biopsy from another tumor (maybe the liver, maybe the lung, or if the GI issue does stem from a GI blockage, then from the GI tract?). ILC is very rarely triple negative, and even though you didn't respond particularly well to chemo, at least some of the tumors might be responsive to a hormonal agent like faslodex, which would also have the advantage of being very gentle. Even without a biopsy, would a doctor be willing to at least give it a try? I'm not familiar with treatment protocols in Spain and how much freedom doctors have to try things that don't fit a "protocol", but this would be something else to ask.

I hope you get the help and answers you need and find a medical team that can make you better or at the very least make you more comfortable.

Hi Lily, you've received some excellent advice above. I second what Piggy is saying. I spent four days in a hospital in Barcelona in October and learned a few [uncomfortable] things about Spanish health care.

The care was good to excellent, but the problem is they don't TELL you anything. Which sounds like what you are experiencing. I couldn't get the nurses to tell me what they were putting into the iv or the lovenox shots, etc. And decisions were being made on my behalf without my direct input.

Luckily the traumatologist I was dealing with understood he had an American on his hands and told me everything he knew. And provided my indirect input to the 'board'. But no one else did. An oncologist later told me that's how it works in Spain. Doctors order, nurses deliver and the patients don't ask questions.

You need to ask more questions. Or a trusted friend or family member needs to do it for you. Don't worry about being 'nice'. You should be polite, but you have the right to know what is going on in gory detail.

Lily, it’s appalling how you couldn’t get any info or go elsewhere. And now you can’t get to your family and friends. I’m so sorry it is this way. You managed to get new pain meds and the cannabis — good for you! I wish for you to find moments of beauty and calm each day. Know that your bco sisters are thinking of you.