Amputation

Miscellaneous and Personal Stuff I Must Share
1

My sister has cancer - sarcoma in her lower leg. Let me paint the family picture - My mother was one of 11. 6 had cancer - my mother had uterine cancer while she was carrying me, plus breast cancer. My father’s family tended more toward diabetes and heart disease, but my dad, a non-smoker, died of lung cancer. I’m one of 5 children. My brother had skin and kidney cancer. My sister had thyroid and breast cancer in the same year! And now my other sister, aged 62, has cancer. We are cellular overachievers.

They want to amputate her lower leg (below the knee, which is great) in less than 2 weeks. The surgeon said that even if she didn’t want to fight the cancer, the amputation needed to be done, in part for pain control, in part because sarcoma bursting through the skin and draining is difficult to deal with. She says based on her lymph nodes, she doesn’t think it’s metastasized, but there are more tests pending, including a biopsy to grade the cancer.

So it’s another long haul. Waiting room vigils and trying to keep spirits up.

StG

2

Oh, that’s so hard. Hugs and good vibes to your sister and yourself.

3

I am so sympathetic, StG. My family (father’s side) aren’t quite the same caliber of cellular overachievers your family is, but we do have quite the cancer lineage. In my family’s case, we seem to specialize in reproductive cancer. The history was enough to get the rubber stamp of approval for my hysterectomy several years ago. Thank GAWD there was nothing suspicious, and the removal meant I didn’t have to worry about the damn thing any more. I get my mammos grammed yearly, and I make sure any strange lump or bump is looked at. Forewarned is forearmed!

I’m so sorry about your sister’s diagnosis. Bone stuff is nasty and painful, and I hope she takes the doctor’s recommendation to heart. The indicators seem good, so perhaps this is a battle she can win.

At least she can be a sterling motivation for all other family members to be hypervigilant and get frequent checkups.
~VOW

4

Hugs to you and your sister, StGermain. A decision like this is never an easy one to make.

5

Rough stuff. I’m sorry your sister has to deal with this.

6

I think with the Covid-19 growing exponentially, it would be better to have this done as soon as possible, rather than potentially getting cross-contaminated through the hospital. Although there will be PT afterward, it’s better to not be swimming in the germ sea.

StG

7

My brain seized up at the concept of cutting off one’s leg as being LESS painful than something else. I realize we’re not sawing off limbs in a field while you bite down on a stick - I hope - but jeebus.

I’m sorry your sis got this thrown onto her plate.

(How is her sense of humor? Would a pirate t-shirt as a “get well soon!” gift go over well, or no?)

8

Well, let’s just say not right now for the shirt. I think the thing about the amputation being painful (she’s in considerable pain already) is the surgeon said there would be nerve blocks put in, so you’d remove the cancer pain and hopefully only have the regular healing to do. And short-term pain vs hard pain for the rest of your life (however long that might be).

StG

9

Sometimes comparing pain seems to be nonsensical–like asking if you want to die by hanging or the electric chair.

In your sister’s case, if the remaining bones in her affected leg are healthy and strong, she probably would be fitted almost immediately with a prosthesis. With physical therapy, she would be on her feet and mobile.

Not having surgery would mean the affected leg would never be weight bearing, so she would be on crutches or in a wheelchair for the rest of her life, as well as continuing to suffer increasing pain from the sarcoma.

Crappy decision? Sure! And it’s a situation that will leave a person with a bad case of “what if?”

You didn’t mention your sister’s age. However, mobility is almost always a big plus no matter how old you are.
~VOW

10

VOW - My sister is 62. Not an active, healthy 62, but not old. She has 3 grandchildren.

There’s not much of a decision as far as I’m concerned, but it’s not me making it, and she and I are two vastly different people. I’m much more logical and pragmatic, she’s much more emotional.

StG

11

Agreed; as well, as the virus spreads, hospitals may not be able to handle “elective” surgery like this. It’s better to get it out of the way before all that happens.

And best wishes to your sister. It sounds like they caught it early enough that she’ll be one of the cured ones - yay!

There was a thread a few years back when a Doper permanently misplaced a foot. The situation was different (injury related to diabetes) but some of the coping ideas might be helpful.

12

Just spotted this.

A nerve block done at the time of surgery would be a very temporary thing - lasting maybe 24 hours give or take. I had one when I had my wrist surgery a couple years ago and the arm was completely dead for maybe 12-18 hours. It was one of the more bizarre sensations I’ve ever felt - like my arm had been replaced by a huge pork loin or something. Then it wore off, and it really sucked. My WAG re your sister’s procedure is that her pain level would be less than mine was because she wouldn’t be weight-bearing and banging the leg against things all that often, but I could be completely wrong about that.

It certainly sounds like, even with normal post-op pain, her pain level would quickly be better than before the surgery.

I’d suggest she look into adaptive items she might need, and order them now (walkers, shower stools etc.) so she has them at home and waiting when she needs them. And get someone in to update things around the house (stronger railings etc.) sooner rather than later as well.

13

My sister’s been waiting over a week for biopsy results, meanwhile the pain is bad enough to require morphine.

Now they say aren’t sure exactly what the cancer is (apparently) after the biopsy, except to say it’s very fast-growing. She’s being referred to the Vanderbilt Oncology clinic to maybe shrink it with chemo and save the leg, which sounds counter-intuitive to me with the whole “fast-growing” thing. This has been bungled for so long. Her primary care doc kept looking at it and saying “Oh, it’s just a lipoma” for AGES. Then being bounced around by private oncology practice she was referred to and then referred to Vanderbilt for surgery, and the two week wait to get into Vandy, and now this. Plus the ramp-up of Covid-19 makes sitting in waiting rooms and clinics a bad idea.

StG

14

StG, this is such an unfortunate outcome for your sister.
Good luck. I hope it all goes smoothly.

15

What a horrible situation to be in. I’m so sorry. At the very least, your sister deserves good care and good answers, and it sounds she’s had neither. While it seems like a no-brainer to remove the leg, it’s a very tough thing to consider. I hope she gets better answers soon. I think there’s a little time before emergency-only surgery limitations are in effect where you are, but sooner rather than later seems wise. Even with emergency surgeries only, sure cancer surgeries would continue. Definitely not elective!

16

nelliebly - It’s been over a month since she had a diagnosis of cancer, and yet they haven’t even done a PET scan. It’s baffling.

StG

17

My aunt had an amputation for vascular disease. She was in so much pain, she couldn’t walk, but the actual reason was that after three tries, her doctor decided the vascular problem couldn’t be corrected surgically, and was probably going to eventually lead to tissue necrotizing. At the point she was at, they could salvage a lot on her lower leg, and basically, she’s be able to walk again, after being in a wheelchair for six months.

Which was, in fact, the case, albeit, she needed physical therapy.

One thing they did was check her into the hospital 48 hours before the surgery, and do some nerve blocks, while cutting back on the general pain medication she was taking, but using some other things-- I don’t remember all the details.

The purpose was to have her completely out of pain for a significant amount of time, like, an entire day-- a whole 24-hr stretch. IIRC, this was to prevent phantom pain. If she was in a great deal of pain at the time of the surgery, her brain might continue to experience the pain, but if the pain went away, then there wouldn’t be any pain in the missing part of her leg.

It apparently worked, because she was in less pain than she thought she’d be after surgery-- albeit, she felt exhausted for the first two days. But after she had healed well, she was never in pain, and has never experienced phantom pain-- she does experience “phantom limb,” though, when she wears her prosthesis. She says when she puts weight on it, her brain registers the pressure on the bottom of her “foot.” I guess it has something to do with the neurons that were once dedicated to her foot still being in place in her brain, and still receiving signals.

She’s done really well. She never did get to the point where she could walk without a cane or a Lofstrand crutch, except around her house, but considering that she wasn’t walking at all before, that’s pretty good-- and she was IIRC, in her early 50s when this happened, so there were other things involved, like the beginning of arthritis in her knees, and her ankle in her other leg. Probably her hips too.

It’s been at least 20 years, and she’s still walking, She’s had a knee replacements, and one hip replacement, and still walks with a cane, but just a cane, not a walker, or two crutches.

She has said many times that she has no regrets.

18

This week my sister had the PET scan and met with the oncologist. They now have a name - pleomorphic rhabdomyosarcoma. It’s very rare in adults - Sloan-Kettering treated 84 cases in 17 years. There’s a very small (<1 cm) spot on her lung, which the doctor wasn’t sure was cancer.

The plan is to do 2 rounds of chemo, followed in 3 weeks by another scan. If the scan shows the chemo is working, they’ll continue it and watch the spot. The covid isolation procedures will work in her favor. First chemo is Monday. So it begins.

StG

19

STG, I hope it doesn’t bother you that I’m praying for your sister. If it does, I’ll stop.

It boggles my mind how slow the system is in some places. There seems to be no realization among docs that it’s VERY hard for patients to deal with uncertainty–or with certainty but a long wait. It was two months between when I found the breast lump and had breast cancer surgery, and those two months were filled with shorter waits. I felt like I was trying to force molasses uphill. A few months later, a friend in another state found a lump, and two weeks later, it’d been biopsied (malignant) and removed.

How’s your sister holding up emotionally?

20

nelliebly - Your prayers are welcome and appreciated. The delays (and initial misdiagnosis by her PCP as a benign fatty tumor) are the frustrating things. Our family is riddled with cancer, and your mind usually makes things worse than the reality, which can be coped with if you know what that is! My sister seems to be holding up quite well. In our family, you think about what would happen with a cancer diagnosis quite a bit.

StG