12 people...(a bit long, sorry)

About a year ago, the lovely Mrs. Striker started having some pain in her foot, below the inside of her ankle. she had not remembered twisting it or anything, but she thought maybe since she was doing so much walking in flats for her new job, it was just getting sore from the lack of support. Some ibuprofen for a couple weeks and resting it seemed to do the trick, however, it still bothered her when she jogged, walked distance, etc over the summer, so she thought maybe she just had some plantar fasciitis.

Late fall, she started having the same pains again, same place, and OTC meds were not doing the trick. She saw her regular GP, and she thought it was just a strain. After it went a few weeks without getting better, I started haranguing her to go to an orthopedist. She’s an awful patient (part of her being a nurse), so it took her a few more weeks of doing this, so we are in late January/ earl February by now. Ortho does X-rays, general exam, and finds some swelling, and an impingement caused by a bone spur, prescribes PT and some stretches, as well as a cortisone shot. Mrs. S. gets the shot, which really does nothing for her, and does PT for a couple weeks, which only makes the pain and swelling worse. Ortho also mentions that when she gave her the shot, she noticed some cystic fluid in the return of the shot, and mentioned that the wife may have a ganglion cyst in her foot as well.

Mrs. S. finally has had enough of no progress with PT and stretches, goes back to ortho for MRI. Upon getting MRI back, ortho tells wife that what they found is not something a normal ortho would deal with, and refers her to an orthopedic oncologist. Of course we start freaking out a bit, because well, it’s an oncologist, but come to find out that this guy also does some regular orthopedic work, as well as cyst removal. Referral happens on Tuesday, and Thursday we are in his office with his PA. PA pulls up the MRI and X-Ray, then calls for oncologist and his resident. No one quite knows what they are looking at. Recommendation for biopsy Saturday morning… the same Saturday that we were going to be an hour away at a B&B for our anniversary weekend.

we decide we’ll just make the best of it, since biopsy will only take a few hours, and go through with it, rather than waiting and not knowing. Incision biopsy happens Saturday morning, should get results by the following Tuesday according to the O/O. Tuesday comes and goes, and nothing… Wednesday, Mrs. S. calls O/O’s office, and they say nothing yet, probably tomorrow evening. Thursday night around 9 p.m., O/O calls from his family vacation in Utah with preliminary results: Myxoid Chondrosarcoma, malignant tumor in the foot.

What’s a myxiod chondrosarcoma you ask? Well, since you asked, chondrosarcomas are malignant tumors that generally form on connective tissues in the bone, and though they are the second most diagnosed form of bone cancers, their are only about 600 people diagnosed with them in the US p/year. About 2% of these are the myxoid type, so 12 people p/year. Yay for her being special. unfortunately, this means that there isn’t much out on the interwebs about this type, what to expect, etc. First action was a chest CT and bone scan, since (from what we can gather) common areas for this to metastasize to are ribs and lungs, though (from what we can gather) this is not common for tumors that are not in proximal location to the chest. This was done last Friday.

It appears that primary treatment for these things is wide margin resection of the affected area, or basically cutting the thing out, and a good chunk of the tissues around it. The O/O said it did appear to have eroded her heel bone, so we’re not sure what this means for possible resection options, though he did mention amputation was a possible outcome. For a sandal, shoe, and pedicure fiend like Mrs. S., this is adding insult to injury. So now are we not only looking at cancer treatment, but this includes doctors who specialize in limb salvage as well, which is a particularly gruesome term to me.

At this point, our best hope is that it has not spread, and that the surgery will be curative (high survivorship rate if it has not spread). Unfortunately, we are kind of stuck in limbo waiting, because of delays in getting scan results, which sucks. So, or course, every possible worst case scenario is going through our heads. I’m worried about her health, she’s worried about my mental state (just recently diagnosed with major depression), and we’re both worried about the kiddos. Basically, this all sucks pretty hard.

Fortunately, or unfortunately, neither of us has had to deal with this before, so we are kind of flying blind. We’ve told the kids, we’ve told family and friends, and we’ve started the carepages page for her. The waiting sucks. The not knowing sucks. the fear, confusion, and pain all suck. The not knowing what to expect next sucks. We never thought we would have to go through this, especially with her, because she isn’t a smoker, drinker, etc. Our heads are still swimming and we are at a loss right now, so any advice you may be able to lend on how to handle this would be tremendously appreciated. Thanks for reading this.

I wish I had some advice for you, but all I really have is good wishes and hopes for a good outcome. My husband had an experience with the possibility of amputation (his leg) which dragged on (off and on) for several years, and his advice is just get as zen as possible: what will happen is out of your control. I don’t know how he did that but I’m pretty sure I could never get that zen. But it’s certainly worth trying. Best of luck to you and please keep us posted. There are a lot of caring people here on the Dope.

Sorry to hear all that. It’s a cliche, but try to take it all one day at a time and not dwell on possible futures just yet. Good luck to you both.

Such an alarming thing to read about! I’m sorry to hear you are all going through this. Your family will be in my thoughts.

Try very hard not to worry over troubles you don’t actually yet have. And give yourself credit, at the end of every day, because you’re still swinging and still smiling!

Good Luck!

I’m so sorry to hear that you and your wife have to deal with this. Stay strong, have hope and know others are thinking of you.

Is there a cancer support group in your area? It doesn’t have to be for THIS cancer, since it’s rare, but look for a support group. My Pink Ribbons Ladies were a fantastic bunch.

So sorry you have to go through with this. Keep us updated. My tidbits of advice are make sure someone goes with her to the doctor (not only for support, but because you may hear stuff she misses and vice versa) and if you don’t understand something, make them explain it to you until you do.

Oh goodness, such awful news. Hang in there. Best of luck to you and your entire family.

I’m seconding the advice to have someone go with her to the doctor (and maybe if possible someone who’s not quite as involved emotionally as you are.) Also, make a list of questions to take to the doctor’s appointment, and write down the answers. Doctors will talk too fast and not explain things if you don’t slow them down (not their fault necessarily; they have to see too many patients in too little time). Good luck.

All I can say is: Best wishes for your wife and you. Yes, it sucks.

Thanks everyone, it’s been a rough past couple weeks since the diagnosis, and I still think we are coming to grips with it. O/O called last night, and CT scan saw some nodules in her lungs, including one that they want to biopsy, so another referral to a sarcoma specialist for that. We are meeting with them tomorrow, and will most likely be paying a visit to the Ohio State University cancer center, because they apparently have several people that are adult sarcoma experts, and one that specializes in (shudder), limb salvage.

Positive side- nodules in lungs have a fair chance of not being malignant, so we hold out hope. I appreciate the thoughts and help, and plan on being at every MD appointment.

Stay positive.
Your username made me chuckle, by the way.

Sent from my adequate mobile device using Tapatalk.

The bit about taking questions is important. Ask them and make sure you understand the answers. Secondarily to that, write down any questions you may have during the visits, and make sure you understand those. Consider recording the meetings and visits, to listen to later and capture anything you may have missed.

You and your wife will be her best advocates. Push hard for answers. Ask about other treatments. Ask about prognosis. Ask about quality of life.

Do research on your own. Start with the internet, but from there, figure out which medical journals are most likely to be helpful and either find a local medical school where you can read or get a subscription. I have a disability that not many people share. Every time I see my neurologist I show up with a list of new things that people are trying, or questions about what she has heard. There are new oncology treatments all the time. Your doctors may not know about them or may not tell you about them. Keep digging.

I’m going to ping Maggie the Ocelot. I thought she had some excellent advice to offer in a similar thread.

Please come back and share how things are going. We really do want to know.

First off, thanks for all of the advice and thoughts so far. I really like the idea of recording the meetings, because there is just so much information, it can be hard to scribe it.

We had a marathon meeting with a sarcoma specialist and his team, which is now her care team, yesterday morning. While we were in with him, the biopsy results from the Mayo Clinic came in, and confirmed the diagnosis of an extraskeletal myxoid chondrosarcoma. Apparently there is a genetic translocation that identifies this, and that was what was found. So, at least we know what we are dealing with. If you care to play along, and are fascinated by rare cancers with rare subtypes, in rare locations, this is a winner. Bone scan came back clean, but CT showed some lung lesions, with the biggest being around 3 cm, so they are not going to bother with a biopsy, they are going to treat as if the tumor has metastisized. they are going to schedule a PET scan and a local lymph node biopsy procedure ASAP.

As far as an action plan beyond that, they are going to try to treat medicinally first for 2-3 months before surgery, to see how she is responding. they have several medicines that seem effective at controlling and possibly reducing tumor size, so they are thinking that they will use those first UNLESS she exhibits a certain protein missing in her DNA/ RNA sequencing they are going to be performing. If this protein is missing, she may be eligible to participate in a drug trial for something that seems very effective against tumor cells missing this protein. Being in research herself, Mrs. S. is all for this if she qualifies.

Eventually, surgery on the primary tumor in the foot is going to be necessary, followed by radiation to the local area. the concern is that with the removal and the radiation damage, there may not be enough healthy tissue left to preserve a useful foot with decent quality of life. The specialist said that he did not want to sound like he was advocating for amputation, but given the extent of the tumor, this may be the step that needs taken for best quality of life and minimizing risk of local recurrence. That’s it from the primary medical side.

Aside from the cancer itself, the biggest concern is Mrs. S.'s weight. She has lost 52 pounds over the past year, which she attributed to loss of appetite, and lower dosing of a med that caused her to retain fluid. Turns out her internal systems were “running a marathon” in the words of the dietitian. So, she has been put on a high calorie, high protein diet… all the ice cream she wants, cheeseburgers, steaks, whatever she can get down. The words 3 to 4 milkshakes a week were used, including using Oreo cookies and Reese’s cups as supplements in these. Basically, she needs to stop losing weight as much as possible, as soon as possible.

The care team we have been presented with seems to be great, including a sarcoma specialist, orthopedic oncologist, radio-logical oncologist, nurse practitioner, case manager, social worker, dietitian, and financial specialist. They told us to more or less ignore our bills from them in the short term, because they will do dirty work with the insurance company to get these paid, which was funny and nice… for now I guess. We are still thinking about getting a second opinion from the OSU center, but feel very comfortable with who we are working with for now. They actually said that they work with OSU on occasion, and it was the other center in the region they may refer to. We liked the fact that they were doing as much as possible to investigate her tumor in particular to build a personally tailored care plan.

The emotions are a bit raw still for both of us, both trying to learn to deal with this. They really could not give us a prognosis because there is just such a lack of information on this type of cancer. We are both especially scared by the lung tumor, and hopeful that this is the only spread. She hates the idea of the amputation for a number of reasons. I am scared of losing my wife. We’ve been together for over 22 years, and she has helped me through a lot of shit that she didn’t ask for. I guess eventually we will learn to live with our new reality, but for now, I know that this shit sucks.

So glad you have new information. Now you know what you’re facing and it sounds like you have a great team in your corner.

When I was going through my breast cancer treatment, I felt like I was on a roller coaster…go here for tests, there for that scan, follow up with this doctor. My work was very understanding.

Let wife eat all the cheesecake she wants. She’s earned it and we need to get her up to fighting weight.

Good luck!

Thank you for the update. It sounds like there are some hopeful signs, in amongst the bad news.

When will they start the treatments? Are they waiting for the DNA sequencing, or can they start something now?

I think others have recommended this, but have you looked into support groups for caregivers? The hospital may have one. I think you might find it tremendously helpful as this goes on. Your wife will be leaning on you. You’ll need someone you can lean on.

My best wishes to you both.

The fact that you have this team and they are apparently communicating with one another is great. Hoping for the best possible outcome.

I don’t have a huge amount to add here, but…

I want to mention a few things here.

First - back when I was working as a cobbler one of the many things I did was modify sandals to fit a prosthetic foot, allowing a foot amputee to wear fashionable footwear. You mentioned your wife was a mani-pedi/shoe/sandal aficionado and having extensive foot surgery, whether “limb salvage” (I agree, it sounds gruesome) or amputation+prosthetic doesn’t mean ALL pretty footwear must be forgone. Some styles will be out of the question but not all. Also, revealing a prosthesis, such as would happen with sandals, is not as taboo as it used to be. Society seems much more accepting of such things than it was decades ago. There is no reason your wife would have to give up pampering her unaffected foot with pedis.

If amputation is required lower limb replacements have come a long way in recent decades. Amputation is ugly to contemplate but sometimes it does give a better result than “limb salvage” from a functional/residual pain point of view. Results vary enormously between people due to various factors, but many people are walking (or even running) on replacement feet/legs. There are more options for appearances as well.

Of course the emotions are raw, that’s a perfectly natural reaction to this. That’s one of the important things about being in contact with other people who have gone through similar things, you find out that you’re having a normal reaction to an abnormal situation.

As my spouse and I have recently learned, even with a more common cancer a prognosis can be difficult or subject to change with more information. It’s probably worse in your situation, but it’s more a matter of degree rather than unique to her cancer.

My spouse and I have been together for 30 years, I understand your fears. I understand your fear of losing your wife, I’m going through those fears myself. Amputation is horrible to contemplate but it may be the least bad choice.

As one caretaker to another - take care of yourself. It is VERY easy to over-extend yourself, to neglect yourself, to lose yourself. You must continually remind yourself that if you don’t take care of yourself you can’t take care of your wife.

Let me also STRONGLY advise that you take care of some legal issues. Make sure you have any needed computer/electronic passwords - “chemobrain” can be a real problem. Make sure bank accounts and other financials accounts are “joint accounts with survivorship”. Set up medical and legal power of attorney NOW - better to have it and not need it rather than the reverse. Keep in mind, too, that it’s not just for end-of-life - treatment can have complications that could leave your wife incapacitated on temporary basis and having a clearly designated person to speak for her makes everyone’s life easier. Consider filling out a scope of treatment form - while normally considered for end-of-life having this discussion will make your life much easier if, for example, you are taking your spouse to the ER due to a complication of treatment and she can’t speak for herself due to, say, delirium or other side-effect (I speak from experience). I hope your wife can continue to handle her own affairs throughout this, many people do, but if it happens she can’t being prepared ahead of time will lessen (although not eliminate) the burden of you speaking for her. If you wait until these things are needed you won’t be able to have a conversation with her about it.

These conversations are hard, but worth the effort. I wish you both the best and a happy outcome.

[Q

My spouse and I have been together for 30 years, I understand your fears. I understand your fear of losing your wife, I’m going through those fears myself. Amputation is horrible to contemplate but it may be the least bad choice.

As one caretaker to another - take care of yourself. It is VERY easy to over-extend yourself, to neglect yourself, to lose yourself. You must continually remind yourself that if you don’t take care of yourself you can’t take care of your wife.

Let me also STRONGLY advise that you take care of some legal issues. Make sure you have any needed computer/electronic passwords - “chemobrain” can be a real problem. Make sure bank accounts and other financials accounts are “joint accounts with survivorship”. Set up medical and legal power of attorney NOW - better to have it and not need it rather than the reverse. Keep in mind, too, that it’s not just for end-of-life - treatment can have complications that could leave your wife incapacitated on temporary basis and having a clearly designated person to speak for her makes everyone’s life easier. Consider filling out a scope of treatment form - while normally considered for end-of-life having this discussion will make your life much easier if, for example, you are taking your spouse to the ER due to a complication of treatment and she can’t speak for herself due to, say, delirium or other side-effect (I speak from experience). I hope your wife can continue to handle her own affairs throughout this, many people do, but if it happens she can’t being prepared ahead of time will lessen (although not eliminate) the burden of you speaking for her. If you wait until these things are needed you won’t be able to have a conversation with her about it.

These conversations are hard, but worth the effort. I wish you both the best and a happy outcome.
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Broomstick, thank you so much for coming in here. I have been following your husband’s journey on your post, and I hate to see the outcome. That you would take time to reply is deeply appreciated. I didn’t think about the password thing at all, but that makes so much dang sense! We have already just lost track of things with everything that is going on, so who knows how much more difficult it’s going to be moving forward. we have already started to discuss getting all of the legal forms in place, just in case. It helps that my mom is a social worker for a hospice organization, and has the info we need, though we hope to never use it.

We were able to get EKG/ EEG/ and PET scans scheduled for next Thursday, with results meeting scheduled with the sarcoma specialist on Friday, so we will know more then. He has already requested the prescription for the medicinal therapy, so I imagine we will start that following the meeting next week. We are kind of resigning ourselves to amputation being the probable course of action for the main tumor, due to it’s location, and that giving the best possibility of no recurrence. Some hours are easier than others, and we have faith that we have a great team around us, and a lot of friend/ family support.

Again, I really appreciate the thoughts, prayers, and advice. we know it will get worse before it gets better.

Oh, and i am doing my best to take care of myself. I was already seeing a therapist for my depression, so this is getting rolled into the mix. the family life people where she is being treated are also offering a ton of support, as is my family, and her family. In the short term, aside from the mental/ emotional challenge, my struggle is going to be not gaining the weight she needs to maintain/ gain through sympathy eating. It is very odd to look at food labels and hope for a nice high protein/ high calorie count.

I’d recommend checking out Gilda’s Club. It’s for any cancer patient and their friends and loved ones.