STEAM ROOM FOR ANGER
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Not raging anger but frustration at peculiar attitudes and need to vent.
The whole "It's normal to take out lymph nodes and render you incapacitated, disabled, handicapped for life" just floors me. Doing research, reading after sentinel or other lymph node removal one cannot, for the rest of his/her life: have blood drawn on that arm; have blood pressure taken on that arm; get a cut on that arm, or a bee sting, or a hang nail; or wear a shoulder strap; or lift anything heavy. That person may develop lymphedema and experience swelling, pain, and complications which restrict movement and are disabling.
Been reading many years' worth of forum threads since discovering this very helpful website and am just boggled at the whole lymph node situation. Scheduled for double mastectomy in less than 2 weeks and refusing to let anyone mess with my lymph nodes. I can live without breasts or hair but must have full use of my arms. I am not rich, nor do I have a large family. I have to work and be useful to survive. I cannot knowingly handicap myself. I am fat with large breasts so getting them cut off will excise some lymph nodes just because they're in breast tissue so lymph system is going to get messed up. No way I'm letting them go after the sentinel or axillary nodes.
Yes I fully understand it helps with diagnoses and staging. If there's micromets they'd want to do radiation. However the research studies show zero difference in survival rates or recurrence rates by removing lymph nodes. The whole subject completely and utterly freaks me out. Naturally I hope my choice doesn't doom me but I just can't let myself become disabled.
Already have autism, now cancer and diabetes so trying to hold onto functionality. Surprised haven't seen as much ranting about lymph nodes as I expected. Might be the autism, dunno, but just had to vent. My Drs are great but like everybody else they seem to blithely pass over the lymph nodes / disabling cause and effect without blinking. No way Jose.
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Cascadians:
The first surgeon I saw wanted to remove a number of axillary lymph nodes but the breast surgeon I went with just removed the sentinel lymph node. So far so good but I think certainly I would have developed lymphedema if I went with the first surgeon.
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I had a positive sentinel node. Fought real hard to have only one level of lymph nodes removed, and then real hard to NOT have radiation if the lymph nodes came back negative (which they did). My BS threw a tantrum and we had a very heated argument over this. 9+ years later, no recurrence and no lymphedema (knock on wood). My reasoning was the same as yours, plus " what are you going to radiate if the lymph nodes aren't there anymore? ". With all the disabilitating side effects from treatment, I could only imagine how life would have been having lymphedema on top of it all.
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I felt extreme pressure from my bs to have a port put in for chemo, when my oncodx was 34. I refused to do chemo and a message was put in my file by the breast surgeon. A radiologist technician told me about the note about a year later. My oncologist firmly suggested chemo but was fine with me declining after our discussion.
I know cancer is serious business but treatment is a decision for us not our doctors. Their job is to recommend not dictate.
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Meow...totally agree! Its our bodies and our decision!
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in 2003 I had my Sentinel Node removed, but the surgeon also removed a few others. I have been fortunate in that I never got lymphedema. I carry heavy things with that arm and I do have blood draws from that hand, but no IV meds or blood pressure taken on that side.
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I hate the staff at my primary care doctor's office. Hate them. Grrr. I had a follow-up appointment with my urologist this morning, and they hadn't sent the necessary referral renewal over. When I called them, they claimed they sent it, but it wasn't there. When I said we needed it NOW, she got hostile like I was picking on her for not doing her job. She sent the fax, but with a nasty note on it. It looks like the urology staff is going to have a little chat with the PC's office manager. I guess it's not as bad as when they didn't send a referral when I was having surgery a few years ago, and the surgery got delayed a couple of hours. They're horrible; I procrastinate every time I have to call because of the rudeness level. Looks like it's time to find a new doctor, just because of her rotten staff. 😫
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Sadly, I can relate Alice. When I had my original bc diagnosis there was a young woman who was so rude and unhelpful in the surgeons office that a very kind nurse gave me her phone number and told me to call her directly. Apparently it wasn’t a secret but she was related to someone in the office so got away with her snarky behavior! If you are a Seinfeld fan there is a funny episode in which Elaine pisses off the doctors in town so she ends up at a vet’s office - sometimes I think that will be me
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I am looking for a new gp. I like my gp but she moved to a multicare center that is about 40 minutes south. I hate the staff at this center, same thing they say they sent in orders and don't do it. Also incompetent with dealing with BlueCross/Shield. Real headache.
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Its such a shame to have to lose a good doctor over bad staff.
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Alice, you need to let your dr and the office mgr know about the staff's rudeness. I'm sure you're not the only one who has experienced this treatment.
It's not right that you should have to give up a decent dr over because the staff is rude and inept.
L
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Lita, my gp is aware but when the practice she was with in broke up she jumped at this multicare center. It is close for her, she is overloaded with patients. She is 65 yrs old and seems to understand the middle age older age female problems. She knows about the staff but not really motivated to say anything.
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Sorry to hear that, Meow.
Me, being St IV Terminal now (and maybe only having a year or so left), I myself would just pull these Bit&$es aside and give them a piece of my mind. Of course, I don't care what people think of me or what I say anymore. (Like, what are they going to do to me? Cancel my TV SHOW, like Roseanne?)
There is no excuse for that kind of behavior. Period. They just don't get it. Until THEY get cancer themselves, they will never know the pain, stress, and heartache it brings. We need to be treated with kindness and respect as we go thru our Tx's and Dr appts. Fortunately, I haven't had to deal with too much of this, except with my original PCP, who I dropped like a hot potato and got someone else. Sadly, some people don't have that option.
Stay strong, L
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Lita57, when I called my PC's office for some authorization paperwork last year, the Guardian Gargoyle was giving me a rough time, as usual, asking why I needed it. I said, rather shortly, that I was juggling two cancers and the oncologist wanted the test. Her response was "Hmph, you should have planned better." Luckily this was on the phone, because I would have throttled her otherwise. I may go for the head on a pike in front of the office rather than a verbal confrontation when I fire that service.
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Yes, we all "plan" cancer, right? And everything it will affect in our lives and takes from us? Hard to believe some of these people work in the "care giving" industry.
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seriously, they need to really vet potential employees in oncology offices and other chronic or terminal disease clinics. I can here some ahole telling a dementia pt he should have remembered his appt time. 🙄
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I agree I’m tired of these charm school dropouts too. My BS was completely insensitive when my Path report came back with a micromet in my SN. He said that will get you chemo. I said I didn’t want to do chemo and he said no one would hold a gun to my head. OMG if I could have pulled him through the phone I would have smacked him
As it was it wasn’t his call anyway it was my MO. She ordered the Oncotype test. Low score so dodged chemo.
The staff at the cancer faciiity I went to was really nice and efficient at least those employees at the front desk but if you tried to call to speak with your doctor’s nurse plan on 2-3 days before you get a call back. You would have hadbetter luck driving to the facility and waiting to see her. Outrageous.
Diane
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Want to hear the most patient-unfriendly thing ever? My former neurologist's office had this mirror-like material (like contact paper?) placed over the window where you checked in. All you could see was a reflection of yourself. You didn't even know if there was anyone back there. All the people sitting in the waiting room were in shock. There was a sign in sheet and you could sign in but then what? I finally got up and slid open the window. Nobody there. I got through that appointment but never went back. Disconcerting to say the least.
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bizarre and insensitive... I’ve never heard of a doctors office doing that...
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That's downright creepy!!
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Snickers - are you sure you weren’t at the police station?
))) joking of course, VERY creepy0 -
I hate Pinktober, hate every single thing to do with the BC industry/cancer industry. I hate the way TV makes it all look so happy and cheerful. I insist on changing the station when it comes onto TV, I always say this. My moron, insensitive dh has always acted like I was just being fussy, he should be able to watch what he wants.
So tonight I am just sitting here in the living room, reading. He says look, look at that kid on the TV. It's this bald little girl dancing around. Makes me sick that this kid has gone through such awful things. I certainly don't want to see that . I TOLD my dumba** husband that I don't want to see this sh*t glorifying the cancer industry. Makes everyone but me feel all warm and cosy, that it's not terrible, a travesty.
We got into a big argument. He yelled at me to shut the F*ck up, threw the TV remote across the room.
- He has never respected what I have gone through, the misery and suffering. When he threatens to leave at moments like this, I want to say go ahead.
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macb, I got into an argument with my husband, his sister is leaving her money to a couple charities. Well that is nice until my husband says "I want to leave my 50% to 2 different colleges". I got upset, he says "why you have plenty of money". I guess he thinks he is Bill Gates. I was so mad what if my kids or I need it. You never know medical expenses. He is an idiot, just wants to impress his sister who doesn't have children.
I don't like the bald head and smiling face, really tired of it too. The "oh look" at all the wonderful medicines there are, you can come home after chemo and have a nice cup of coffee in your own home. You would think cancer is totally curable.
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Macb, I hear you loud and clear about how husbands behave. A few months after my BMX I started getting “get over it, you don't have cancer anymore" when I reacted to nerve pain or tried to calm an itch. I even got it when I had a six month and year follow up appointment with my surgeon. Mine hated the fact I would complain about the pinking of October. You have my sympathy.
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If no one has listened to the podcast on here about PTSD you should listen to it. As soon as I did I realized it is exactly why I feel how I do. Now to get doctors to listen though is another issue. It is here:
https://www.breastcancer.org/community/podcasts/ptsd-20181220
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I definitely agree that most of us if not all of us have PTSD. Caregivers also go through that as I discovered helping to look after my mom died of lung cancer about a month after her own diagnosis.
Thankfully, I have not been told by anybody to get over it but I am sorry it happened to you Meow. As if cancer is like a cold you can get over. Sheesh.
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Agree. I was even told by surgeon that I had "nice cancer". Really? I didn't know there was a nice cancer. It sure has taken it's toll on my body and mental well being over the last several years. Poked, prodded. No privacy from people who want to look at you all over now. Makes you want to get in a car and drive away sometimes and not talk to anyone ever sometimes since they all say stupid stuff that makes it all worse. At least here people do understand.
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My husband used to say terrible things to me, told me once I was lopsided, or I looked like a monkey when I would do manual lymph drainage after lymphedema. He used to get really angry that I wasn't a cheerful bc patient. He even once compared me to the old neighbor across the street who had bc, but had not much treatment side effects to deal with compared to me.
I agree about PTSD, I would say most of us have some degree of it. Those cheery cancer industry commercials and uplifting little stories on the evening news make me enraged. Volcanically enraged. My husband gets angry that I tell him to change the channel. So he can not plead ignorance, asking me to look up from my reading to see the pathetic dancing bald child was rubbing salt in a wound, pooring vinegar in a painful wound. He knew better, and did it anyway. He is an insensitive clod.
Now he is sulking. We fought about 2 wks ago about something else, that is a kind of similar emotional hurt. I don't think I will ever be able to forgive him for the neglectful, selfish way he behaved then when I was being actively tortured by the bc industry. I tried to let it go, but then last year I had a scare, and he went right back to being a dismissive, cold fish. When I needed his arms around me, to reassure me or let me let off steam, he would walk away and say "I don't want to hear it"
What the hell is " nice cancer"????????
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better to be single than with a guy like that?
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I agree Rosabella. What a prince.
macb04 - OMG how insensitive can your husband be. You don’t deserve nor should you put up with that kind of treatment. He should be ashamed of himself. I think the next time he threatens to leave call his bluff. Frankly I would rather be alone than with him if it was me.
It’s reprehensible how these husbands act with all the pain and suffering we went through and are going through. I guess you find out who the person you married really is. A crisis will do that it brings out the best or the worst in us.
Meow - shame on your husband too. His first priority is the welfare of you and your children.
My husband was attentive - not overly. Sometimes I wish he had been. I’m so fiercely independent he just figured I would take care of it like I do everything else. He was there for my surgeries and my appointments and I know he cared I just wish he had coddled me more.
Diane
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