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Ok, I’ll start. 

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. 


Christine 

Hi ChristineH‍ 
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?

Lianne

Letrozole side effects‍ , Hello, I saw you in the Immunotherapy discussion. Thanks for posting that link. Welcome to cancerconnection. Are you interested in introducing yourself? 

I just received a diagnosis of melanoma last Wednesday after a punch biopsy taken about two weeks before that. First consult is not until next Friday. My physician told me the melanoma is deep - > 4 mm. Sounded grave. Now I am waiting and wondering. It is a terrible place to me mentally. Hard to think about much else but I am trying. Any suggestions?
 

Hi Sparrow1957‍ 

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.

http://www.cancer.ca/~/media/cancer.ca/CW/publications/Questions%20to%20ask/32099-1-NO.pdf

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. 

http://www.cancer.ca/en/cancer-information/cancer-type/skin-melanoma/melanoma/?region=on

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.
 

Hello Sparrow1957‍ .  I found waiting to be the hardest about my cancers.  I have had melanoma in 2010 and breast cancer in 2017. 
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.


 

Thank you ACH2015 and LPPK for your suggestions. I agree, the Canadian Cancer Society website has been excellent. I will check the Mayo Clinic as well. In the meantime, will start going about my day and stay active in other pursuits.

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?

Thanks.

Sparrow1957‍ it depends on you as to whom you share your news. For me, my family was in the know but friends were only on a need to know basis.  At work I had to tell my boss because I was leaving to have surgery, but I didn't tell my co-workers until a few days before I was to leave.  I found that once a few people know, the news travels fast and I was content to let people find out that way.
 

Sparrow1957‍ 

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.

Keep well

ACH2015 - Andy.

 

ACH2015‍ and LPPK‍, thank you for your further insights. They confirm my initial instincts and it is good to have someone to run these things by.

 

Hello everyone. I am 46 years old & I have metastatic breast cancer. I was diagnosed with mets to my liver, spine & shoulder in May 2018. I completed chemo in September 2018 & currently receiving Perjeta & Herceptin every 3 wks & will stay on this for as long as it works. I am hoping that this will work for a very, very long time. Any metavivors out there?

Hello Capebreton‍ 
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.
 

Thank you. Oh No. I am triple positive with lobular features. How long have you been on the fulvestrant? How are you feeling on it? I have no symptoms at all other than being tired a lot.

Hello again Capebreton‍ 
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?
 

Hi everyone!  I was diagnosed with Invasive ductal carcinoma May 2017.  I had a lumpectomy and two nodes removed, no cancer in them.  I had radiation 16 treatments.  I am on Letrozole.  I have been doing pretty well but as time goes I seem to be getting different side effects.  I am thankful for online sites like this, unless someone has had cancer most people including family can't really understand how it is.  Even though surgery got it all, stage one, with taking the letrozole it's nice to have support with side effects, etc.  and find out how others are coping.  There is such power in knowledge.  I am always learning new things.  

Inthefog59

Hi Inthefog59‍ 

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!

Hi Capebreton‍ I too have metastatic breast cancer with mets to my liver. I am taking letrozole and ribociclib which seem to be working so far. I’m sorry you are facing the same diagnosis. Treatment has come a long way in the last few years and there are now many kinds available to us. I wish you success with your treatment.

Hello Elizabeth06. Sorry for my late response & Thank you for responding. God love you. You have been dealing with this for quite some time. Yes fatigue is an issue for many of us. Unfortunately.  I have to realize that I can't do what I used to do. Not easy especially with an 8 year old. Lol. I'm honestly not sure what my lobular features are & how it impacted my treatment. Must check this out. Sooo much to learn. Very overwhelming but will get there.  ?

 ashcon  Thank you for the welcome.  A support I had when this began is a friend I used to work with had the same type of cancer I had.  She was awesome letting me know roughly what to expect and how things go.  But she didn't have radiation or have to take any ai's.  So when I was done with radiation and starting to get side effects of the Letrozole I just felt I was kind of on my own.  So a few months ago I found some sites off of facebook and that helped.  It was on one of those sites a woman told me about this site as she saw I was from Canada.  Still not sure where to reply to messages but I will keep trying things out.
inthefog59

Inthefog59‍ , I’m not sure how you are receiving your messages, whether you’re getting them in an e-mail or browsing the site, but you can go into “my account” and set your account up so that you can get messages only to you, or messages in a daily digest. If I recall correctly, this is under “Dashboard” on the home page.

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.

Inthefog59‍  you might try posting your Letrazole side effects under the Treatment and Side Effects in the Forum column.  Others who have had the same side effects might be able to point you to a way to help alleviate them.
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.

Hi all;

I'm new here. I am 59, my wife is 50. We were married May/18. On Dec 21/18 she was diagnosed with breast cancer and goes in for surgery Jan 24.
Being new, Typing to an online page,I don't know what else to say right now.

Hi janesman‍ 
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.

Hello - I don't where to start - so here is what I am dealing with, both parents with lung caner - Mom in Nov 208 & Dad Jan. 2019.  Both have lung cancer, Mom is going thru chemo - Dad is supposed to go thru radation sometime.  I just lost & helpless