Knowing what you do now after having been through it all (or some of it) with cancer...

JustGrateful

What would you have liked to have known about it all when you started? I have found a couple of things that I sure thought I would have been told about right up front.

LiveWithCancer

I wish my first oncologist had insisted that I get a port. Instead, it wasn't even mentioned to me. I think they thought I wouldn't live long enough for it to matter, but I did and it did! My veins are toast now because of the chemo I got through them. AND, I ended up with a port when I changed doctors and treatment plans.

GregP_WN

I would have liked to have heard about the side effects that are known to be a serious problem with head and neck cancer radiation.

beachbum5817

I would like to have known that for some people the side effects from the chemo could be permanent. It wouldn't have made me refuse treatment, but it would have been nice to know beforehand.

ChildOfGod4570

I would have liked to know how chemo would affect me so I could start taking precautions right off and avoid neutropenia. I also would have known to take pain pills prior to the 5 sitting up radiation treatments that involved being squashed in a mammogram machine for long stretches of time. HUGS and God bless.

omaalyce

As others have stated I would like to have known about side effects: neuropathy, gout, eye issues, how one's nails peel off, that due to lack of hair in my nose during chemo how I should have bought stock in a tissue company-my poor nose dripped constantly. The extreme fatigue and muscle and joint pain. Cellulitis that can lead to blood infections. If you have radiation on your left side your heart can be affected. So many things that can happen but we don't know about them until it does. I know many patients who have no side effects, me, I think I've gotten them all...LOL. I am not whining I just would have liked to have been more aware and prepared. It's been 3 years and now I have rheumatoid arthritis as well. It's been quite a ride. I am blessed, NED so far, unfortunately as I have written before the cancer had spread and was down my chest wall and not found until after chemo and during my surgery that followed. 24 years prior to my breast cancer I lost my right kidney to renal cell cancer and the two are not even related. I am doing well and try not to think about it...which we all know can be difficult.

One of my biggest things is that I wish I had known was that I had dense breasts. If one has dense breasts they must have more than a yearly mammogram because mammograms miss things as they are not an effective way to monitor people with dense breasts. It is believed that I may have had my cancer for at least 4-6 years prior to my ultrasound in 2016. I don't live in the past but I do mention this as it is my "mission" to educate women & men about dense breasts. Denseness has nothing to do with size, it has to do with the breast tissue that cannot be seen through by a routine mammogram. Mammograms must be followed by ultrasounds or the new 3D or 2D mammograms that have been developed over the years. All patients who have mammograms need to know if they have dense breasts-very important step. In many states it is now a law to inform patients that they have dense breasts.

I guess the thing I wished I knew the most was how this was going to impact my quality of life. Chemo has affected my brain, my strength, my feelings, my ability to just get up and go-some days it's a struggle to just get up. I know many of you know what I am talking about. My wish is that with the strides that are being made daily in cancer research maybe chemo will wind up being the last option instead of the first and others won't go through "what I wish I knew..."

sheri56

Two things come to my mind....first, I wish my breast surgeon and I would have talked about having both breasts removed instead of just one.
Second, I wish I had discussed lymphedema with the same surgeon. A week after my mastectomy I had an axillary lymph node dissection and she removed 12 nodes. She mentioned briefly lymphedma was a common side effect. I've dealt with it for 10 years now.
But, with that said....10 years later, I am cancer free and very happy to be alive!

Horselady46

I wish my oncologist would have told me more about side effects instead of just handing me a paper to sign. I wish I knew more about neuropathy before hand. I may have been able to do something about it. I still have it even after 7 years. They told me it would go away. Plus many other things. My taste, memory, muscle strength and so on.

lynn1950

Had I known that PTSD was a possibility, I would have been proactive regarding my mental health. It was a long, difficult journey climbing out of an abyss that not only affected me, but more importantly, the people I love.

cllinda

I had to find out about a port on my own. I had read about it online and then asked the doctor. He should have told me about it. Once I mentioned it, then I got one. So that would be something that I wished had been mentioned as I just started out. So many times these doctors forget to mention things that can be important in a new patient. We should not have to find out into on getting a port on our own. So much of this cancer stuff is so new to us and old hat to the doctors. A port when you are scheduled for a year of chemo should be something all doctors should mention.

BoiseB

I was told about but not about the after effects which are long term or sometimes permanent. I lost all my teeth, had a surgery site hernia, and an obstructed bowel due to scar tissue. Also neuropathy was supposed to be a temporary side effect, It is permanent.

hikerchick

I wish I had known that no reconstruction would not leave me feeling like "less of a woman" as I was told by everyone in the health profession and around me. It also did not ruin my posture or balance, even though I only wear foam prosthetics. I'm 9 years out with no breasts and totally happy and thankful about that decision.

Bengal

Yes! hikerchick. It is so refreshing to see you say that. We have been conditioned by male dominated society for centuries to believe that not only do women have breasts but that women ARE breasts! We are so much more than that. I could say so much more on that subject. I remember talking with one male member of my team about lumpectomy vs mastectomy and him replying if it was his wife he wouldn't want mastectomy . HE wouldn't want! Ugh.

Bengal

So many of the answers here seem to be about side effects. I think they downplay that aspect of treatment deliberately. They want us to get treatment, of course. I know there are some who, if all the possible side effects are spelled out right at the start, would probably have second (or third, or fourth) thoughts about treatment or refuse it out right. I am glad I accepted treatment but if they had told me I would have never ending pain, neuropathy, PTSD, brain fog, etc, etc, etc not sure what I would have done.

legaljen1969

Compared to most in this community, my journey has been so short-lived and relatively uneventful. I agree with hikerchick and bengal. Having breasts does not make you "more" of a woman. I have had a few people (not personally and bodily affected by cancer) ask me when I was going to have my reconstruction done. I told them I would have it done AFTER they had their own mastectomies done and started the journey of cancer and surgery.
More than anything, I have learned to accept myself much more "just as I am." I have become much more assertive about my own body and my choices. I have learned that you have to be your own best advocate, but you also need to be willing to let people step in and help you when you need or just want help.
I have learned that if you want to know about something, you need to ask. You cannot assume they will tell you everything you wonder about when your monkey brain takes over at night or in the middle of the day. Take a notebook with you to write down questions and the answers to those questions. Sometimes they will answer them for you just as an appointment is going on and sometimes you need to ASK.
My doctor and my nurse navigator told me early on, everyone's journey with cancer is different. This is YOUR body and your cancer, not your neighbor's cancer. It may be worse for you or not as bad for you. So they tried not too feed me "too much" information.
If you are not happy with the care you are getting, or the way you are being treated, you have the right- if not the responsibility- to ask for a second opinion. Know that doctors pretty much expect you to get extra opinions- especially with cancer.

legaljen1969

@JustGrateful, when I said doctors pretty much expect you to get extra opinions- I don't mean they require it or that you MUST do it. I mean that they are not surprised when it happens. It seems to be pretty normal. I didn't end up doing it. There are some who think I was foolish not to get second opinions or check on clinical trials, but I was very comfortable with my team and I felt they were leading me down the right path.

Another thing I "wish I had known" is that the doctors know you will have a lot of questions. They expect it. Don't be afraid to ask questions. Don't think you are "bothering" them with your questions. You are (or your insurance is) paying them for their "expertise" and to treat you. I don't know how long a "standard" appointment is, but if it is 15 minutes, you ask every question you can for those 15 minutes. If 30, ask questions and keep them there for the 30 minutes. Someone is paying for their time. Don't let them rush in and out. Cancer is a scary word. They know you are scared. They know you are apprehensive. They are the ones who are supposed to have the answers.

Knowing what I know now, I am glad I didn't wait to make appointments for second opinions, only for my peace of mind. Those couple of extra weeks would have thrown me into scheduling surgery right at the beginning of the quarantines and shelter in place orders. It wouldn't have delayed my surgery by weeks, but most likely by a couple of months. I am not discouraging anyone to get a second opinion or to ask questions. I asked a LOT of questions. I hope you have a really great care team that is really compassionate.

petieagnor

I agree with everyone. I think the #1 item should be protecting your heart. Radiation damaged my heart, but because I had anxiety, NO doctor was looking for a-fib. I had to start passing out for a Dr. to believe me that something was amiss. Scarey!