I thought I would show a couple of pictures (BAD selfies I might add, I am not adept at this using one hand) to give you an idea of the contraption used to help with lymphedema.
It would seem Blogger no longer allows me to make images bigger, so I apologize for the small pictures. Anyway, I sit comfortably for about 50 minutes while this vest / sleeve sequentially fills with air, like a blood pressure cuff, and then releases. It is not uncomfortable, but it is very tight when filled. In fact, it feels rather nice.
Upon my research, I discovered it described as "the dirty little secret" of cancer. Lymphedema can occur after breast cancer because usually lymph nodes are removed (to check for cancer and also remove if they are cancerous) which disrupts the flow of lymph fluid, causing it to build up. Lymph circulates through your whole lymphatic system (your whole body is involved) and it removes waste, bacteria, etc. from your tissues. Breast cancer survivors can get lymphedema in their arm, hand, breast, chest, armpit, trunk or back. Having radiation also messes with your lymphatic system because it causes scar tissue and narrows the lymph vessels and nodes. Chemotherapy (which I was lucky not to have) can also increase the risk of lymphedema if they do it on the same side as your surgery.
I think the thing that angers me, is I had been having pain and other symptoms which I had asked about within the first year after my surgery (lumpectomy) and it was agreed that it was probably just nerve pain. But never was it mentioned that I should watch for signs of lymphedema. I probably could have been treated for this, and could have been wearing a special compression bra long before this, but I did not know what to ask.
If you know of anyone who has been diagnosed with breast cancer (and you will, undoubtedly), perhaps this will pop in your mind and you can guide them and let them know that they can get help. Apparently some surgeons are quite good in recommending compression garments for their patients, and others are not. Some oncologists are excellent with their communication, and others are not. Here in Ontario, it is hit and miss, as the state of our health care continues to circle the drain. I know what of I speak, trust me.
I'm not usually a "Debby Downer" (apology to Debbies out there) on my blog, but it does need to be said and expressed from time to time. If you have good health care and a good doctor, good for you. You deserve it. But I deserved it, too, and I'm tired of slogging through and stumbling across things that should have been asked, should have been said, should have been done...
But I will end on a lighter note. Murphy is cone free and as happy as a fat tabby cat can be. The sun is shining and there are tiny plants germinating in my vegetable garden. I saw my first hummingbird yesterday at the feeder I recently put out. Life is still good.
Thanks for all this important info on lymphedema! It's terrible that not every cancer survivor is advised to watch out for this.
ReplyDeleteMaybe it will help someone.
DeleteI totally agree with you, we deserve good health care in this country. However we get more like a third world country with our health care every day. Family doctors are like hen's teeth!! Feel free to vent as you have a very valid reason too!
ReplyDeleteI had no family doctor when I discovered I had breast cancer. It was not a good situation. I do have one now, but the only way I got one was because of my situation. If not, I’d still be an orphaned patient after my doctor retired.
DeleteI have no idea why my comment came in as anonymous, sorry about that,
ReplyDeleteWomen who have had abdominal surgery after cancer diagnosis can get Lymphedema in their legs. I have suffered with it for many years. There are less people trained to handle the treatment of lymphedema in extremities as it is not as common as the upper body issues. Of course some health care providers don’t even care. It makes me emotional just reading your post and recognizing the same issues. I am a first time responder but I read your blog often.and just wanted to concur. Thank you for writing about this.
ReplyDeleteThere are also “ pants” that go all the way up your torso that provide the same therapy. Maybe you could research if there are any providers ( physiotherapists) in your general area that you could go to? I’m sorry you experience this as well!
DeleteI wish we'd had access to one of those when my father had horrific odema in one arm following cancer surgery. You are right (and I suspect it doesn't matter where in the world you are asking the questions) if no one tells you what assistance you might look for you don't even know what questions to ask - or whether such things might even exist. I had to learn odema massage to try and reduce the effects on my Dad.
ReplyDeleteNormally it IS manual lymphatic drainage that a person has done, but this physiotherapist has SO many patients that she purchased this contraption and it is usually fully booked! I’m sorry your father had to deal with that!
DeleteWe here in the U.S. are daily hearing horror stories of what is going on in our medical profession. I do believe there are kind, caring, communicative doctors and other health professionals out there and we probably don't hear enough about them. But the whole system is askew including the insurance companies. We have suffered greatly financially because of what we were assured (by our insurance company) would be covered and then was not. Ours isn't the most damaging (certainly to one's physical well-being) we've heard of and I'm so sorry you've had to go through what you did and continue to have to do. You have every right to vent in any way you please. Hugs to you for what you've had to endure.
ReplyDeletePeople like to say that we Canadians have “ free” healthcare, however we pay with our crazy taxes and many of us pay into health insurance. As well, access to doctors, specialists, etc. is difficult and takes a LONG time. I am sorry to hear that your situation has been damaging financially. It shouldn’t be that way, either.
DeleteI work in cancer care and assumed all patients were told about the risk of lymphedema. I'm sorry that was not your experience. Melanoma patients are also at risk because they also have a lot of lymph nodes removed.
ReplyDeleteYes, I have discovered that not everyone gets identical treatment or information.
DeleteI'm sorry to hear that no one warned you about this and I hope this compression contraption will bring you relief. How terribly frustrating for you. Thanks for spreading the word, so you might help others.
ReplyDeleteAnd really that was mostly the purpose- if it saves someone else a bit of difficulty, then it’s a good thing to let people know about this.
DeleteDid not realize that you had been affected by lymphedema. 23 years ago when I was treated for BC (lumpectomy and radiation), I was told about the possibility of lymphedema. Luckily it was never my problem - although I did have numbness and some pain under my right arm for about a year. The scar tissue is excessive, but no longer bothers me. And so glad to hear that Murphy is now cone free!
ReplyDeleteI also have numbness and scar tissue. I do ALWAYS like reading that your experience was 23 years ago, though!! And you are here with us, living your life, and writing your blog!!🙂
DeleteThankyou for sharing this very important information. Right now I no longer have a family physician but once I can find one I will find out if lymphedema can happen when you have glands removed during a hysterectomy for cancer.
ReplyDeleteGlad to hear that Murphy no longer has to wear the "cone of shame".
God bless.
Wow, that is more than I knew. Mom used to elevate her arms for a time. Of course, this was 1995.
ReplyDeleteIn Australia it’s the same. Our health system is a mess. We have nurses on strike, paramedics have put slogans all over the ambulances, this is for better pay and working conditions, this is in Victoria. I have private health insurance and I hope to God I can always afford it, however, I’ve heard of bad care even if you are a private patient. Many moons ago my family doctor was a Canadian, I remember discussing the situation in Canada with him. He was the best doctor and I was devastated when he moved back to Canada. Dr Chris we still miss you…
ReplyDeleteGood doctors are certainly in short supply, and are to be treasured. I'm sorry you've had so much trouble. Thank you for the advice for breast cancer survivors, that's valuable stuff. Of course, if doctors did their jobs properly and really earned their enormous salaries no one would have to depend on advice from other patients! It makes me so mad!
ReplyDeleteTake care!
Jenn I am sorry that you are going through this. The old phrase of "fore warned, is fore armed" would have been helpful info for you; that kind of care wouldn't have cost anyone anything. From reading other comments, I can see that we in Ontario aren't the only ones struggling with less than good health care. I live in fear of annoying my GP doctor & being dropped; I didn't realize that they could. I think the private clinics like MedCan are on the rise. ... Mary-Lou =^..^=
ReplyDeleteI think the medical system is failing in Canada as a whole. With the failure of provinces to properly fund the system over many years, the loss of doctors and nurses as a result of the pandemic burn-out, and the limited number of practitioners being trained we're in a bit of a tail spin. The information you've provided is very helpful. I do hope your treatment will be successful.
ReplyDeleteI believe it is getting more difficult to find a doctor that actually listens and properly diagnoses anymore. Our current doctor is down to working only 3 days a week now, and preparing for retirement. We have to find a new one soon. I do hope you are getting proper care and recover quickly.
ReplyDeleteThank you for sharing this important information. I am sure it will help others. A relative of mine was diagnosed with stage 4 prostate cancer. He had a primary care physician, was doing yearly physicals and had a previous history of colon cancer (a red flag for repeat cancer.) The key is catching cancer early, not late. Also, while getting chemo, an oncologist said if a man gets a PSA blood test and the results are 4, you need to see a urologist ASAP. My relative's PCP saw a PSA 4 a year earlier and said, that is fine. Wrong.
ReplyDeleteToo many of those stories.
DeleteRealistically, there ARE many fine, caring physicians out there but I think they are under such time constraints and with fewer family physicians who are the first line of defence, people are slipping through the cracks. Unless you can be your own advocate or know the questions to ask, it’s a scary path to navigate.
Thanks to all who have commented!
I will get through this and it’s not nearly as terrifying as that first diagnosis. I think it is “ mild” compared to many and I’m grateful for the cool compression suit.
I would be extremely upset that no one ever mentioned this to you as a potential after effect of the cancer/surgery/radiation. Your arm thing reminds me of my compression vest for my lungs. It's not as inflatable as the first one but still, I get the inflating and such. I'm glad it's not too uncomfortable. But a pity you have to deal with it at all. Thanks for sharing the info and the photos.
ReplyDeletelymphedema is no fun. I know several folks with it. No fun at all.
ReplyDeleteWow. No one could have warned you? That seems ridiculous! I'm glad you found this contraption and I pray it gives you the relief you deserve. Keep us updated. (Btw: your hair looks great!)
ReplyDeleteYay for good news regarding Murphy.