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New Members-say hello

Re: New Members-say hello

Posted by Cynthia Mac on Sep 20, 2020 7:43 pm

adammawer‍ , well, based on what you've written, it looks like your brain knows all it needs to get you through. I know what you mean about actually implementing it, though. I completely get what you mean about the issue of losing control. I've been a fair bit that way all my life, and that's a tough nut to crack. I sometimes wonder if people who are more "go with the flow" fare better in a crisis.

Again, everyone's situation is different, but my Dad had some pretty kick-ass chemo treatments, and to my knowledge, he never "hugged the big white bowl." I used to stay with him the night after his treatment, and I was never such a light sleeper in my life, so I think I'd have known.

You mentioned that you're already finding the hospital to be helpful in keeping you organized with your fridge sheet. Dad's hospital did such a good job even my Mom would have been happy! (She was very organized.)

I know it's scary to have to walk in there alone, but the nurses on Dad's ward were awesome. I hope yours will be, too - I've a mind they will be.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: New Members-say hello

Posted by Trillium on Sep 21, 2020 1:20 pm

adammawer‍ 
Hello Adam! You have a really good team of support behind you with your mom and girlfriend. You will be just fine on your first day. There will more likely be another person there with it being their first day as well. The system therapy suite where my son had chemo could treat about 25 people. Just tell your chemo nurse how you are feeling about your first treatment when you arrive. Bring a game or book or something to do.

It’s about 3 hrs each day for the full week of BEP and then only 35 mts for the Bleomycin on the one day for the next 2 wks. This gives your body a break until the next full week of chemo. My son slept most of the time but he also had a somewhat reversed sleep schedule up most nights but every 3 nights or so he slept 24 hrs. He has other medication he takes which is also a contributing factor. The oncologist told is that BEP is the standard testicular cancer treatment. My son was also told for him it was a 95% cure rate!  He was also told to bank sperm if he wanted to have children.

He was told on the first day with his oncologist that he would definitely lose his hair so when it started to fall out at the end of the first week he shaved it off.

Wishing you the best today at your follow up scan meeting! Please let us know how it goes. You might want to start a thread of your journey with updates in the testicular cancer forum to get support from others and to let others in the future have your experience to read for their support.

Also, there is a private men only forum here where you may feel more comfortable talking about testicles and related topics.

Hugs
Judy 
“Every day I wake up and decide today I’m going to love my life.” Carrie Hamilton

New Members-say hello

Posted by IlaE on Sep 27, 2020 12:56 pm

Hi everyone, 
I've been reading all your stories and posts and can feel the amazing community and connection that's happens on this site. I'm grateful to have a place to come for support, advice, laughter and everything in between.
I found a lump in my right breast while we were on 'vacation' in August. I went to see my Doctor as soon as we got home - which resulted in a mammogram, followed immediately by an ultrasound and the next day I was in for a biopsy. A week later she called with the results and said "it's cancer." That was September 15.  Two days later we got the call from the Women's Health Centre and spent 1.5 hours on the phone with the doctor explaining what my specific situation was and started outlining the treatment options. I have triple negative breast cancer and it's grade III. I laughed a little when she described it as aggressive and not well behaved. I thought - how perfect - I'm a big personality with a sh*t-ton of energy and I'm often not well behaved. 
I've had a bone scan, tomorrow is the CT scan. I've gone ahead with private genetics testing to determine if this is hereditary and / if I have the BRCA gene mutation. We have no family history to speak of and no way to find out. I want to know for myself and also for my family. 
Surgery is scheduled for October 16. I have decisions to make - lumpectomy, mastectomy, or I was offered another option. I feel like I don't have all the data I need to make this decision. I'm not sure what the full plan is and it feels like trying to put a puzzle together without knowing what the picture is and knowing for sure there's pieces missing. Apparently they don't usually refer to oncology until after surgery, but I feel like it will inform my decision making regarding surgery. My doctor has been great - so the urgent referrals have been made and I should have an appointment this week. In all this waiting - my brain spins - like that meme "I have 27 tabs open and I have no idea where the music is coming from."  I feel like when I have the plan in place and have made decisions, then I'll feel more settled, grounded and less spinning in options and not knowing what the right thing to do is.
I turned 53 on Sept 6. I have an amazing husband of 25+ years and a kick a** son who turned 15 this year. We love to travel and feel so blessed to have visited so many places around the world. I'm a foodie, I love cooking and entertaining. We're the house that all the teenagers hang out at and we love that - the noise and craziness fills my heart. I'm super active, distance running, yoga, weights, mountain biking, there's not much I won't try. 
Water is my happy place - ocean's in particular - it's the place I exhale.  I find my stillness and calm watching waves, being in the water, or in land locked Alberta - sometimes a bath or shower does the trick.
I'm so thankful for this space and know so many of you will share your experiences, advice, tips, tricks and support. I hope to do that for others too as we journey together.
Ila (pronounced eee-la - rhymes with tequila)

Re: New Members-say hello

Posted by Wendy Tea on Sep 27, 2020 1:40 pm

IlaE‍  What a great first post! I will share my ocean with you any day but watching grain fields waving in the breeze can seem like seeing ocean waves.

You will find out useful tips and tricks here. One thing i found good to know was how important clear margins are. If you opt for a lumpectomy, sometimes a second surgery is needed.
Happy reading and welcome to our community. 
Healing takes time and opportunity. Wendy Tea

Re: New Members-say hello

Posted by Essjay on Sep 27, 2020 4:04 pm

IlaE‍ hi there from another Triple negative BC sister.

i hear you - all those tabs open with the music playing and you have no idea how that happened...

I like you wanted all of the answers at once and I found my anxiety high until I really knew what the plan was.

I was diagnosed in July 2018, age 49, and had a partial mastectomy in October 2019. It seemed a long wait after to see the medical oncologist, but it turns out they like you to have healed from surgery before you start chemo. Triple negative gets the full works regardless of stage, and radiation for sure if you have cancer in your lymph nodes...

The scans and tests are scary, but they are useful. For staging but also as a baseline for the future so they can monitor even the most minute changes.

id like you to meet our sister ashcon‍ - she too had stage lll TNBC and is three year survivor.

Please know we are here with you for your journey, to answer questions, help you make decisions and generally provide virtual {hugs}...

best wishes, Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: New Members-say hello

Posted by ashcon on Sep 27, 2020 7:52 pm

IlaE‍ 
Very glad you found us here and have reached out with your amazing story.  Had you been taking part in regular screening mammograms before finding this lump yourself?
You are right, things spin like crazy in the first few weeks after diagnosis.  You are also very right in your assumption that once a plan and a course of action are in place, things do settle down.

Our stories are so similar.   Like you, I am very active, and water is my heaven.  In fact, I was away at a cottage-escape one week after I found my lump and I paddled and swam every day, like I wanted to prove to myself it wasn't cancer!
Like you, I was 53 when diagnosed. That was 3 years ago.  In my case, the surgeon did not bother to request hormone receptor status on the biopsy, so we didn't find out it was triple negative until after my surgery.  He did a lumpectomy and sentinel lymph node biopsy (SLNB) because he felt the tumour was small enough at 2.5-3cm to be removed with just a lumpectomy.  He was as surprised as I was that it was stage 3, had spread to 4+ lymph nodes, and there was lymph-vascular invasion as well.
I started chemo about 5 weeks after I had my surgery.
I eventually had a second surgery, 6 months later, after my chemo was done, to remove more lymph nodes and to also remove both breasts (prophylactically). That's a separate story!

I, too, had genetic testing done.  Like you, no family history, but I wanted to be sure I was not leaving my 20-something daughters an unwanted legacy!  Good news - nothing really showed up, except for a variation of unknown significance to the PALB2 gene.
Will you have your genetic testing results back in time for your surgery? That would likely be a contributing factor in your decision for lumpectomy or mastectomy if it comes back with a BRCA1/2 gene mutation.
You mentioned you were offered "another option" for surgery aside from lumpectomy or mastectomy.  What is that?

Your treatment plan will be determined based on what the pathology report from surgery reveals.
But Essjay‍ ‍ is right. With a TNBC diagnosis, you automatically get signed up for chemo. TNBC responds very well to chemo, especially Taxol, from what I was told.
So I'm not surprised they're getting in you for surgery now and will figure out the chemo regime once you are recovered from your surgery.  I had dose-dense "AC-T" infusions every 2 weeks for a total of 16 weeks (8 infusions).

Attached is a document that I used to help me understand my pathology report when I reviewed it with my doctor. Perhaps it will help you? I also got copies of all my pathology reports, scan results, bloodwork, etc.
I highly suggest you do the same, even if you have to pay for them. 
I really believe in asking somewhat intelligent questions of my doctors, and of being a member of my own medical team. I prepare a list of questions before each meeting.  I was very blessed to have a great team who appreciated my inquisitiveness!   As it turns out, this knowledge helped me advocate for a few things for myself that would otherwise have not been included in my treatment plan (like genetic testing, double mastectomy and removal of my ovaries that looked a little "off" in a scan result that was missed by my doctor). 

Your life, and your love of life is abundant and beautiful.  You will not be defined or described by your cancer!  Good luck with the CT scan tomorrow.  Please share your progress and your questions - we are here for you.
Attached files
---- "Nothing ever becomes real till it is experienced." ----

Re: New Members-say hello

Posted by Survived99 on Sep 28, 2020 8:32 am

Hi IlaE‍ 

You've been getting good advice from the regulars here. I thought I'd pop in and give you my story. I heard the news that I had breast cancer in late November 1999 when I was 42, I had a mastectomy and axillary node dissection, chemotherapy for 6 months and a bunch of radiation. My stats were a 4.5 cm tumour, 17 out of 20 lymph nodes positive for cancer, gr III, triple negative (although they didn't have that classification at the time). I would assume I was Grade 3 although my oncologist wouldn't say because he said it didn't matter with regard to my treatment options. I have since been tested for BRCA (amongst a number of genes tested) and I am negative. The closest person in my family with BC was my paternal grandfather (rare, I know).

I just celebrated 20 years from the last radiation treatment. After treatment I changed my life quite a bit. At 5 years post treatment I discovered running and have kept fit ever since. 

I hope treatment goes well for you!

Ruth

Re: New Members-say hello

Posted by Pokergal on Sep 28, 2020 9:31 am

IlaE
Welcome to cancer connection. This group has helped me so much. I had a bilateral mastectomy in Nov 19th. I was diagnosed with ductal cell carcinoma in March 2019. (Left breast) I was never told what stage and at this point, I don’t care. I have infusions of pertauzamab and herceptin every three weeks for the rest of my life. 
I had no choice whether to have a lumpectomy or a mastectomy because the tumor was 4cm. I wanted both breasts removed but they wouldn’t remove good tissue( wanted my piece of mind to be calmed if it wasn’t there) 
So I did not have a decision whether or not to remove the breast. 
now that it’s gone, I joke about it constantly. I am 54 years old and single. But at my age, I don’t care that I’m lopsided or known as the one boob wonder. God throws at you what you can handle. 
I am not going to do a reconstruction either. I’m proud of being flat on that side. It was a hard journey and I survived(I have had three “no progression of the disease” ct scans) 
you will have plenty of decisions to make as you go through this journey and know you are never alone through any of them. Even though we are all strangers, we are bonded by this. 
Good luck in the next couple weeks! 
Pokergal

Re: New Members-say hello

Posted by IlaE on Sep 28, 2020 10:08 am

Essjayashcon‍  Survived99PokergalWendy Tea‍  
Thank you all so much for the very warm welcome and for sharing your stories. I'm so thankful already for all of you!
When I saw my surgeon in person last week, she was thankful we had opted to meet in person. She said "seeing" me (my overall physical condition and my real live boobs), she was able to offer the option of a reduction / lift. They would take much more of the breast tissue than with a lumpectomy - and while they're in there, give me a lift too. I float between a CC to DD cup and after breastfeeding, these babies do hang pretty low.  I could tell my husband was keen on this option - and he's also so supportive that this is my decision. We talked yesterday and his thought is to save as much of my breast as possible. My thought process is what does chemo and potentially radiation do to my body in the long term? I know I don't have a choice about chemo, but if I opt for a mastectomy, then no radiation is required. Or that's what the thinking is at this point. I'd rather remove risk of future surgeries, cancer coming back again in the same breast, and know eyes wide open what the longer term impact is to my overall health. I don't have any plans for reconstruction. Flat and lopsided is perfectly beautiful to me. Fingers crossed CT scan goes well. I do have a consult with a plastic surgeon tomorrow in case I do opt for the reduction/lift. More info and data points helps me make better decisions. Hoping the courier package from the lab arrives today with the genetics test. Once the lab has the sample back at their facility, it's 5-12 business days for results. That should put us right around the mid-October mark - hopefully in time for surgery decisions. Hugs to you all, thank you so much for your support and ashcon‍  - I love the document! so helpful!
 

Re: New Members-say hello

Posted by Lacey_Moderator on Sep 28, 2020 10:44 am

IlaE

So glad you are finding the feedback from others helpful!

Best of luck as you continue to gather info and make the best decision for you. As an extra added resource you could call our Cancer Information Helpline as well and speak to an Information Specialist at 1-888-939-3333. They are so helpful!

We also have this info from our website: Treatment for Breast Cancer

So great to have a supportive partner at home.

How many kids do you have?

Lacey

 

Re: New Members-say hello

Posted by Lacey_Moderator on Sep 28, 2020 10:46 am

Survived99‍ 

20 years!!! 

Wow so glad you popped into share that. I always appreciate the knowledge and support you share.

Seeing your name pop up put a smile on my face,

Lacey

Re: New Members-say hello

Posted by Wendy Tea on Sep 28, 2020 10:52 am

IlaE‍  Thank you! I had a mastectomy without chemo and radiation.  I was worried about clear margins.  I now have a prosthesis that looks great, bounces and jiggles, and keeps my spine aligned so I protect my posture. 
Chemo can attack bone density and weaken your teeth.  On the other hand it can save your life.  Radiation can be a bit dangerous if it is near the heart but on the whole most people tolerate it more easily than chemo.
I hope my comments give you some questions to ask your medical team.  Again finding out the odds of each treatment or procedure is really important. 
Healing takes time and opportunity. Wendy Tea

Re: New Members - oncologist questions

Posted by IlaE on Sep 29, 2020 2:22 pm

EssjayashconSurvived99Pokergal‍ 
Hi all,
I just got booked for an appointment with the oncologist tomorrow.  I have a few questions I want to ask - do you have suggestions for things to ask about that I probably don't know I need to ask about??
Thank you!!
 

Re: New Members-say hello

Posted by ashcon on Sep 29, 2020 4:48 pm

IlaE‍ 
Glad to hear you have your appointment. I'm assuming this is the medical oncologist, yes? (The one who deals with chemotherapy).
I've attached a doc that I used to formulate my questions for my initial meeting(s).  It's a little dated and some questions may not apply to your situation, but it should get your brain thinking about what would be important for you to know.  Some questions you can safely forego, like "What are your qualifications" (!!) (Needless to say, I got this from an American website where this questions may be merited.)

Also, because I invariably thought of more questions after I left the Dr's office, the most important question for me was, "If I think of other questions after I leave here today, who can I call for answers?"

Good luck tomorrow. Let us know how things went
Attached files
---- "Nothing ever becomes real till it is experienced." ----

Re: New Members-say hello

Posted by IlaE on Sep 29, 2020 5:12 pm

ashcon‍ thank you so much. I'm so overwhelmed.  This is soooo helpful.
xoxo

Re: New Members-say hello

Posted by Buffythevampire on Sep 29, 2020 8:25 pm

IlaE‍ I always went to my Doctor's appointments with a list of questions and on the drive home I thought of more. Then I would start a new list of questions for the next appointment.

Not sure if I have shared my story with you yet or not. Originally I had a lumpectomy but then another larger lump was found with a MRI and I ended up needing a mastectomy. I chose reconstruction. Initially DCIS then triple positive IDC. I am finished my surgeries except for a nipple reconstruction which I will be getting in a few weeks. One side now has an implant and the other has been reduced/lifted. I previously was a DD but now I am smaller, not sure of the size but was told by my Plastic Surgeon that I would be a big C or D.

My treatment included chemo and a drug called herceptin. I did not need radiation. I am on a hormone blocker, Letrozole that I have to take for 5 years.

And it's totally normal to be overwhelmed. I definitely was.