Posted by luvcurling on Feb 11, 2019 11:13 am
I've prepared by getting lists of questions together, many I found on the Canadian Cancer Society website. I divided these into all of the possible sections of treatment - chemo, radiation, hormone, follow up and other. Felt repetitive but I want to cover it all and will focus on pertinent questions. I do ask someone to come with me - I don't know if they allow recording of the sessions - another question - so my son will be with me - he's going to "roll his eyes," but oh well. It's my health not his, lol.
Have a good day everyone! I'll be using many distraction tips today to keep my mind on today, not tomorrow.
Luvcurling - Colleen
Posted by Pickles on Feb 11, 2019 11:20 am
I have been on this journey since August 2017, when I was advised of an abnormal mammogram. After a few biopsies, I was finally in to see my surgeon, and in the presence of a medical student, was told I had cancer. I was pretty strong in the office, but as soon as I was in the hallway, I melted. My first phone call was to my husband who was extremely comforting and supportive. My second and third calls were to our sons, who came through with amazing caring and support.
From then on, my husband was in attendance with every procedure and appointment. I took a notebook and prior to each appointment, wrote questions and other observations. If I missed something, my husband would add to the conversation. Having two sets of ears was the only way to go. All of my health professionals were amazing compassionate people. Not once for the entire treatment did I ever feel anxious or upset. There was one exception. When I went to see the radiation oncologist with his attending resident, I was surprised at their negativity as I had been treated for a triple negative invasive ductal carcinoma. Their opinion was that I had an increased change of recurrence. Well, both my husband and I spoke up and I remember saying, "it's not coming back".
I think my attitude and my ability to fully articulate my concerns enabled all my health team to treat me respectfully and part of a team. Not once did I feel I was condescended to.
Prior to my first reconstructive surgery, my husband asked if I could have the reduction on the non-affected breast during the first procedure. The doctor was very thoughtful and made sure I was comfortable in having a reduction on the left side. That seemed to be quite a concern for him. Not for me. At the time, I was almost 65 and really, with what I had gone through with the chemo and radiation, this was just not that big a deal. He agreed to do the reduction during the first surgery even though he usually does the reduction on the second surgery. Nice to be healed prior to the second surgery.
What I have taken from this journey is to be knowledgeable about the subject. I did ask Dr. Google about various ideas, but in the end I made sure the sources were dependable. I was also very clear with some "friends" who had their own take of my situation and were trying to be "helpful" with various "interesting" suggestions.
What I realized early on in this journey is that this is MY body and I needed help getting it healthy again. I had work to do to give it my full attention. My team worked very cooperatively with me. We were as one. No wonder friends and family nicknamed me the Warrior Queen.
Posted by ashcon on Feb 11, 2019 11:38 am
In response to your question:
I will be seeing my oncologist next Tuesday for the first time since finishing chemo and radiation, so the list is well on its way! I will be asking about follow up scans, bone density test and a progressive return to work. Anyone have any other suggestions?
Congrats on finishing chemo and radiation, and like you, I appreciate a good list! Especially when it comes to that point where you will not be seeing your docs with the same frequency, so you've got to make every visit count!
I found the information in this link from National Cancer Institute (yes, it's American) very helpful, especially the ones about getting a follow up care plan (sometimes called a Survivorship Plan), and "Common Questions After Treatment Ends"
Follow Up Medical Care
Good luck tomorrow, and wishing you lots of health and happiness for 2019!
Posted by Kims1961 on Feb 11, 2019 1:46 pm
Looks like Yogasoccermom and luvcurling both have appts. tomorrow - and they both have "active" usernames...😀
Others have posted so many great suggestions - that I have little to add - other than, asking at appts. if I think of a question after the appt. who should I call? Sometimes Cancer Centres have a nurse on call during office hours, some have nurse navigators and others - the doctor's admin. people can take your question and have the doctor call you back. Even when I'm really prepared and have someone with me, we have ended up a day later thinking " what did she say about that?" or I forgot to ask him/ her this.....
Good luck to all with upcoming appts. Nice to hear updates after as well!
Posted by Cynthia Mac on Feb 11, 2019 8:35 pm
Posted by Catherine52 on Feb 12, 2019 11:25 pm
I meet the medical oncology team soon. I find the worse thing about medical appointments is the wait.
I spoke to the adm/clerical on Monday and she was very reassuring. She told me she would phone me on Wed. when she was working on the bookings and not to worry she has to give me an apt within 14 days.
Posted by sedna on Feb 13, 2019 7:24 am
Thank you for your bravery in sharing your experiences, they mean a lot.
Posted by Elizabeth06 on Feb 13, 2019 11:42 am
Welcome to Cancerconnections.
Just wanted to wish you well with your appointment today. As you’ve already read thru this thread, you have access to excellent advice and can see how many of us are travelling this same path with you.
waiting for a plan is a very anxious time, a very human reaction to the news we have cancer. I hope that begins to change after your appointment.
can you share a bit about what you are dealing with?
know that you are not alone.
Posted by elelizwel on Feb 13, 2019 4:44 pm
He said there is no advantage when it comes to radiation as the radiation will target the skin and any changes to the implant or the spacer should be minimal. After my appointment with him that day, I received notification for 2 appointments that week. One to see an R.N. who took a history, reviewed meds, ordered ECG and blood work.
The next appointment immediately after that was with the anesthetist. I had all my questions ready for her and voiced the concerns I had. She was great and reassured me and answered all my questions. She also asked me if I had a dental crown, which I did. She was also more interested in my severe obstructive sleep apnea, if it was controlled and which CPAP I used and whether I was compliant with this treatment.
The next week, Feb. 12, I had an appt. with Internal Medicine with a physician who checked my heart and asked more questions, cardiac related and to do with my obstructive sleep apnea, diabetes, told me to hold the diabetic meds. on the morning of surgery. Also noted that I had pulmonary emboli last year. This appt. went very well.
My second last appt. this week will be with Thrombosis due to the pulmonary emboli medication, which is a blood thinner I take. I imagine he will want me to stop it before surgery.
The final appointment will be at 7 a.m. on the day of my surgery. It is called a Nuclear Lymphoscintigraphy which evaluates my lymphatic system for disease.
So far I have been blessed with good doctors,nurses, technicians, admin. and information. I have special gratitude for this site and the people who have quickly answered my questions and shared their invaluable experiences with me. This forum has helped me get through all my appts. and pre-op concerns more than anything I have done so far. This time next week I will have my mastectomy and then I'll have questions about what to expect post-op, what helped, who helped etc. One day at a time is where I live and in gratitude for my life and the people in it as they are and as I am, no matter what my diagnosis is.
Posted by Lianne_adminCCS on Feb 13, 2019 6:57 pm
I am so happy to hear that your experiences have been positive ones and that you have had your questions asked and answered. This is partly why so many of us recommend to be prepared with questions and concerns written down before an appointment. It puts the patient in some sort of control and makes for a more satisfying experience as it seems you have found.
Also glad to hear how much this site has helped you. And whether you realize or not, your posts are/will helping someone else coming up behind you.
I wish you well with your surgery and look forward to an update when you are able
Posted by Hollykins on Feb 14, 2019 11:49 am
My heart goes out to you. I had a mastectomy Dec. 17 so I had a post-surgery Christmas too. Our world is pretty messed up when one of your biggest stresses about a medical appt is getting parking! I think your solution is wise - especially for winter.
I will be starting hormone therapy soon .I see my Oncologist Feb 20 & will get the results of my Oncotype test. I hope I flunked it big-time & got less than 30 out of 100. Even if its higher I think I'll skip the 4 rounds of chemo she offered. I'm stage 2 A.
So I'm guessing we will soon be Sweaty Bettys .I've been preparing for night sweats & hot flashes .At least we can get this going in the winter & not July. Once you start your Tamoxifen I hope you let us know how it's going. I'm hoping if I prepare for the worst I will expect the best!
Happy Valentine's Ladies! 🌹
Let's Love Ourselves! ❤
Posted by Kathy49 on Feb 14, 2019 9:52 pm
Yes, that is a good way to put it - that things are messed up when cancer patients' biggest worry is finding a place to park at the hospital. I don't really blame the hospitals in big cities - they have no room to gain, the buildings and the existing parking lots take up all the space. Maybe what could be done is to take some of their outdoor parking lots and construct "indoor" parking structures with several floors. I am very grateful that the Paid Patient Transport van is there, but some of the driving quality varies (i.e. older drivers who, on a few of my trips, had wandering attention or something and on one trip alone almost rear-ended the car in front five times - different cars in front during the 2 hour drive).
I don't know what an Oncotype test is. I have not been given one. I asked about what stage I'm at but the oncologist said mine was very small and so I wasn't at a "stage".
I was told about Tamoxifen causing sweating, and it is also on the warning sheet they gave me with my pills. I used to have very bad sweating with an anti-anxiety medication I was taking, and it was so embarrassing because if I left my house, lots of people would ask if I was OK? was I sick? etc. It was summer, I'm overweight, and I was taking sweat-causing pills, but the experience was not nice.
Yes, that is a good point about it being winter - they are saying the summer will be even hotter than last year's. Thanks for your message!!
All the best to you!! Kathy49
Posted by Hollykins on Feb 15, 2019 11:54 am
I'm so happy you don't know about the Oncotype test! To not even be a stage is super. As long as it doesn't cause an identity crisis! Oncotype tests take tissue from the tumour (hate that word...can't I go back to calling it a lump?). The test reveals whether chemo will benefit you or not & what your recurrence score is.
Sweating in public. Not fun. I've been given the advice to dress in layers so tank tops & short sleeve blouses is my plan for over-air conditioned places (or maybe then they'll just be 'warm' places then!) Also, carry a fan. Here's a kooky but cool idea. Got it from a bride. Put antiperspirant all over your sweaty spots. Apparently alluminum isn't related to cancer. I've used it occasionally for under-boob sweat. I guess I'll be using 1/2 as much there since my mastectomy.
Did you read the message several messages down about the bus pgm in Ontario? I think it's called Patients on Wheels? It's a $ 100 a year. Maybe the bus drivers are less into rear-ending cars. Although that might be a way to take your mind off your appointment!
Take Care! Good luck w your Tamoxifen (maybe call her Tammy)
Posted by Hollykins on Feb 15, 2019 12:05 pm
That transport I mentioned is called "Wheels of Hope." I guess I was 1/2 right. I'm not sure if it goes to your area.
Soon we will be experts on the best antiperspirants. Also, modal is supposed to be the best fabric for sweat-prevention .Bamboo is good. Cotton is pretty good (loose weaves are best). I think polyester is supposed to be the worst. Guess how I distract myself? Googling moisture- wicking fabrics!!
Enjoy your day!
Posted by Lee Ellen on Feb 15, 2019 7:43 pm
The only preparation I make is to keep a running list of questions in a document on my laptop. A few days before the O.V. I open the document to make sure that my questions are as clear as I can make them, and to delete any questions to which I no longer need an answer or which would be more appropriate for my psychiatrist. I print out the list and take it to my appointment; I give it to the office staff before I see the doctor, which gives him a bit of time to look over my questions and better prepare for our visit.
Posted by Elsie13 on Feb 16, 2019 2:44 pm
Posted by danielday on Feb 16, 2019 3:51 pm
A diagnosis of cancer often means you will have a number of medical appointments to attend. How do you feel when you have an upcoming appointment? What helps you prepare?
As a caregiver how do you support your loved one with medical appointments?
"Small cell lung cancer that has metastasized. It is used in patients whose disease got worse after treatment with platinum chemotherapy and at least one other therapy." https://www.cancer.gov/about-cancer/treatment/drugs/Nivolumab
Also, if she becomes resistant to chemo at some point, I will ask doctor to put her on Antibiotics. According to recent MIT lung cancer study, antibiotics or anti-inflammatory drugs may help combat lung cancer. http://news.mit.edu/2019/bacteria-promote-lung-tumor-development-0131#
My mom is doing great for now.. I could not be happier.