Posted by ChristineH on Nov 1, 2018 7:11 pm
I’m a 52yr old woman. In June I was diagnosed with a huge (15cm) kidney tumor. I underwent a radical nephrectomy a month later. The initial pathology showed it was a cancer but couldn’t be identified by the local lab.
The case was referred to UHN and 3 months later we have an actual identification. The tumor was an Ewing sarcoma, which is a rare (1 per 500000) childhood cancer. There’s not enough adults who have it to even have stats on it.
Everyone involved in my case has been caught off guard and trying to understand what this all means because my tumor is out. I now know this cancer metastasizes a lot and I’m looking forward to being accepted by a cancer center so my treatment can move forward.
I’d be happy to hear about anyone who has dealt with adult Ewing’s sarcoma.
Posted by Lianne_adminCCS on Nov 1, 2018 7:41 pm
Thank you for taking the time to introduce yourself here.
While I understand that adult Ewing's sarcoma is rare, the emotions and feelings that comes along with having a cancer diagnosis is shared by many so reach out when you need and we will try to help where we can. This is a fabulous community for support and help and is full of great listeners.
Mellybean - I know you haven't been on for awhile but do you have any insight for Christine?
Posted by Sparrow1957 on Dec 15, 2018 8:10 am
Posted by ACH2015 on Dec 15, 2018 9:33 am
Waiting for the initial consult is a tough place to be. How can we help but have all our questions and concerns spinning around in our heads? We can't and I'm sorry to say that's normal.
What we can do is prepare for that consult, get out a pen and paper and write down the questions we have. I'he sure you have your own questions, and I'm including a link from the Canadian Cancer Society. Its a great brochure that can be used as a guide.
Its up to you, so read up if you choose to do so. I have also included a link from the CCS that talks about Melanoma in many facets. It may help guide or even answer some of your questions.
I find some level of control can be regained by understanding as much as possible about our situation, being upfront and sharing concerns and questions with our family and friends.
It's good youv'e found our community. There is lots of knowledge and personal experience here to help all get through what we must.
Keep well, try to do the normal stuff we all do everyday as positive distractions. Coping is half of the battle.
We can't change what we are going through, but we can manage how we do it.
ACH2015 - Andy.
Posted by LPPK on Dec 15, 2018 12:45 pm
A few things that helped me get through the waiting period were;
Checking out reputable internet sites (eg. Canadian Cancer Society, the Mayo Clinic) helped me to understand my cancers and possible treatments.
Talking with other who have had/do currently have cancer is very helpful. In the Forum under cancer types there are many threads on Skin cancer
Writing down all my questions, big and small, between appointments and then giving them to my doctors at each appointment helped to make sure all my questions were answered. I also had my husband and daughter accompany me for the initial appointments (with GP, surgeon and oncologists), they made sure all my questions were answered and my daughter recorded all the answers for us to discuss later.
Keeping busy. I was home on sick leave at the time so I did a lot of decluttering of cupboards and closets (very theraputic), daily walks, and reading, doing puzzles and needlework when I needed quiet time.
I had my family support group and the wonderful people on this site to offer encouragement and moral support.
Time is most likely moving at a very slow rate for you right now but rest assure that once all the testing is done the treatment phase will start and you will find yourself in a whirlwind of activity.
Keep us informed on your journey.
Posted by Sparrow1957 on Dec 16, 2018 7:43 am
I have shared this news with close family. I presume it's best to keep this kind of news to one's self, at least until you have an idea of what is in store. I am concerned about seeming to be attracting attention. Can you share any experience on that front?
Posted by LPPK on Dec 16, 2018 9:41 am
Posted by ACH2015 on Dec 16, 2018 9:51 am
I agree, there's nothing wrong with waiting until you have more information about your diagnosis, and treatment plans before sharing in a broad sense.
I was working at the time of my diagnosis, and had to leave work. I chose to write an e mail sent to all staff to break the news there. That way everyone was on the same page, and I didn't have to repeat myself multiple times.
It's tough being thrust into the spotlight, especially if you aren't used to being the center of attention. I found it easier to keep everyone involved in the loop with the same information, and updates.Family is easier in some ways, because there is already a network in place for communication.
People that care will rise to the top, and want to know how they can help and express concern for you and your family. I look at telling people close to me by turning the situation around. Wouldn't't you want to know about a close friend's cancer sooner than later? Personally I would, and that way its not awkward or a surprise later on as treatment and recovery progress.
There is no right or wrong way to break the news .Its your choice how and to whom you share, but don't put additional pressure on yourself regarding attracting attention. You have cancer, people you know care and will want to know about it.
Keep yourself occupied as best you can until next Friday's consult and let us know the next steps.
ACH2015 - Andy.
Posted by Capebreton on Jan 16, 2019 4:19 pm
Posted by Elizabeth06 on Jan 16, 2019 4:37 pm
welcome to Cancerconnections and thanks for introducing yourself.
i too have metastatic breast cancer, Mets to liver, bones, skin...I was diagnosed in April 2013. I am currently on fulvestrant injections monthly. I have never been on H&P, but do know of others who have had a good long run on it. I have lobular breast cancer, er pr + her 2-. How are you feeling on your treatment? Are you receiving anything for your bones?
under specific cancers, then breast cancer, there are many discussions you might find interesting. Under groups, there is a group for living with advanced cancer and there are other women with metastatic breast cancer who’s stories you may want to read, or post your own story.
are you continuing to work?
this is a safe place to ask questions, vent, etc.
Hope to hear more about your journey so far.
Posted by Elizabeth06 on Jan 16, 2019 5:22 pm
I have only been on fulvestrant since October 1, but had a scan in December and it is working, so, I am happy. This is my fourth line of treatment. I was on letrozole initially, then exemestane and everolimus, then capecitabine,. I feel good on the fulvestrant. It has been easy on me, so, hoping I get a good long run of stability out of it.
i think fatigue is always present. Cancer causes fatigue and each treatment lists fatigue as a side effect, so, after almost six years of treatment, I don’t remember what having energy feels like...I’m grateful to get a couple of things done each day and save my energy for bigger events. I can rest later.
ive had problems with my hemoglobin levels, which causes fatigue as well, so, i’ve had many blood transfusions to deal with that. But on the fulvestrant, my hemoglobin has been steady!
what are the lobular features of your cancer? Does it impact your treatment?
Posted by Inthefog59 on Jan 17, 2019 12:14 am
Posted by ashcon on Jan 17, 2019 9:05 am
Welcome to the community. I'm glad to hear that your cancer was caught early and it sounds like you received a good treatment plan.
I got my diagnosis of IDC (Stage 3, triple negative) in July 2017, shortly after you.
You hit the nail on the head when you talk about the side effects, or 'after affects' of cancer treatment. They can be equally or more pervasive almost more pervasive and life impacting than any surgery, chemo, or radiation that we go through.
I went through surgeries (2), chemo, and radiation through 2017-2018 but am starting to feel like my old self again...almost!
You are right: many people, even close friends and family members don't 'get it', despite their best attempts and sincere care for our well being.
Who has been in your circle of support through your diagnosis and treatment?
If you go to Forums > Treatments and Side Effects" and type "Letrozole in Search field, you'll find lots of shared experiences and discussion on its side effects.
Given that you are well-along in your journey, I'm sure others who are just joining this community with a recent diagnosis would appreciate any tips and wisdom you can share.
Be well, and keep learning!
Posted by CarolineH2018 on Jan 17, 2019 10:04 am
Posted by Capebreton on Jan 17, 2019 4:32 pm
Posted by Inthefog59 on Jan 18, 2019 1:33 am
Posted by Cynthia Mac on Jan 19, 2019 9:37 am
I see you also tried to tag Ashcon, and the way to do that is to put the @ symbol right before the name and type the first few letters of the name right after, with no space. A box will come up with several suggested matches, and you select the one you need. This creates a “tag” and that person will get a notification that they’ve been “paged” on the forum.
If you browse through the Discussions, or do a search, you can find discussions on the topics that are of interest to you. Ashcon gave an example of Letrazole in her post in this thread.
Welcome to Cancer Connection. If you have any other questions, speak out, and we’ll try and get them answered for you.
Posted by LPPK on Jan 19, 2019 5:36 pm
At a Living Well & Managing Your Health After Breast Cancer workshop I attended some suggestions were given for Aromotose Inhibitors (e.g Letrazole)
Joint pain and Arthritis....anti inflammatories, regular exercise and stretching
Dry Skin..good emollient moisturizers, hydration, change shower/bathing routines
Vaginal dryness....moisturizers, Replens, Vitamin E, Lubricants
My sister in law, 4 years clear of breast cancer, was having a lot of leg pain and found that turmeric pills helped
I am sure there are a lot of people who would have helpful suggestions for you.
Posted by Elizabeth06 on Jan 20, 2019 1:25 pm
welcome to cancer connections. I am sorry that this diagnosis has brought here, but, you will find much support and knowledge within this group.
I am a breast cancer patient and I know the time between diagnosis and treatment was full of anxiety. While still stressful, somehow things settled down once we had a plan of action and began to move forward.
if you look under discussions, there is specific cancers, then breast cancer, where you will find many discussions, you or your wife might find interesting, also, treatments and side effects. There is also a group for caregivers.
whenever you are ready to add to your story here, be it asking for info or venting about how you are feeling, we are here.
i hope all goes well with your wife’s upcoming surgery.
Keep us posted on how you are doing.
Posted by Munkins on Jan 20, 2019 10:10 pm