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New here and need to hear your story

New here and need to hear your story

Posted by zozo on Feb 7, 2019 7:54 pm

Hi all,
I just signed up today. I have stage 3 breast cancer, ductal with lobular features. I had two lumps in my right breast, one was 11cm, the other 1cm, and 8 of my lymph nodes were involved, including a 17mm and a 10mm tumour in my lymph nodes. I was diagnosed in September, surgery in October and so far have done 3 of 6 rounds of chemo. I also have dense breast tissue, which along with the lobular features, made my cancer harder to detect. My cancer is grade 2 in aggressiveness, hormone receptor positive, and HER negative. 

I just turned 46 and have two kids under 10, which along with my husband are my only family in Canada.

What I find helps me most is hearing positive stories from other people who have fought/are fighting cancers similar to me or worse. I went to a local support group and it was mostly women with tiny little lumps which were caught early and some of them didn't even need chemo (I'm truly glad for them). I know that my cancer is not guaranteed to be cured and I made my peace with that early on. But I am currently mentally and emotionally weakened because of chemo and I just need success stories. 
 
Anyway, if anyone here can share their inspiring stories, I would appreciate it very much. Thank you in advance. 

Re: New here and need to hear your story

Posted by Christine WM on Feb 7, 2019 9:43 pm

Hi Zozo. I’m new here too...just signed up today so I’m very new to all of this as well. I don’t have any stories for you (yet) but just wanted you to know that I read your post and would be interested to hear how you’re doing. I’m still having tests done to stage my breast cancer. Had an MRI today. About a month ago I found out  my tumour along with some DCIS was discovered during an elective breast reduction surgery I had in December  (weird, eh?) so more tests are being done to see if it there is anything else there. I know I’ll need radiation therapy but not sure what else will be involved. Not an inspiring story, I’m afraid but I’m hoping more inspiring stories will come along for you. 

Take care (and welcome to both of us!)

christine

Re: New here and need to hear your story

Posted by Kims1961 on Feb 7, 2019 10:08 pm

zozo‍ and Christine WM‍  - Welcome and thank you for posting!!!   You sound like me - almost 2 years ago!  On my  56 th. birthday ( for emphasis....😉) I was diagnosed with Invasive Ductal Carcinoma - stage 2.  I elected to go with bilateral mastectomy - then had chemo, radiation and onto medications.  My cancer was HER2+ as well as estrogen +.  Even though, HER2+ is considered an aggressive cancer my oncologist is still calling it "curable".  

You will hear so many awesome stories of people living well with cancer.  My oncologist with breast cancer said to give her a year - treatment can be tough - but there are so many options and ways to manage/cure cancer as well as the difficult side effects.  Others who have stage 4 , continue to live well - there is just so much research and information to help us now.  

There is a book online as well as other awesome resources through www.cancer. ca.  I found reading some of the stories helpful as well as this community.

http://www.thesilverpen.com

The above link is to a book you can download about "Silver Linings" with cancer - sounds ridiculous - but I have found so many silver linings.  Once the "shock" of my diagnosis started to settle, I have become more at peace with treatment and my path.

Although my children are adults now, having this health issue has strengthened our family.  They will see that as a family - you pull together.  Also that "You've Got This" - definitely a challenging time but together we are stronger.

Please feel free to post/vent/ ask questions.  You will find the cancer community is here for you.  I also found connections in neighbours, colleagues, friends - people who weren't family - but also touched by cancer.  Support is available.

So glad you posted!  Kim

 

Re: New here and need to hear your story

Posted by zozo on Feb 8, 2019 12:18 am

Thank you Kim and Christine. Christine: I'm so glad your cancer was discovered the way it was and I hope you have great outcomes. Kim: Thanks for sharing your story. Were you offered the option for bilateral mastectomy? I wasn't, and later I found that my cancer is the type that has a greater chance of reoccurring in the other breast. I would have pressed for it had I known. To  be honest, overall, I'm very disappointed with my surgeon. I just hope that she at least did the surgery right. 
Also how do you get usernames hyperlinked like you did, Kim?

Re: New here and need to hear your story

Posted by dmarie on Feb 8, 2019 12:28 pm

Hi All
Like you Zozo, I have stage three breast cancer with ductal and lobular features. I had a mammogram and physical exam just 6 months before but, because of dense breast tissue, nothing was found. After finding a lump in October, I had a biopsy in November and then a left breast mastectomy and lymph node removal in December. I will start my first round of chemo next Thursday (Valentine's Day!). The plan is that after Chemo I will have 5 weeks of daily radiation and will be on anti estrogen drugs for years (?). 
I am interested in how you are doing with your treatment as it seems I am following along behind you. 
 

Re: New here and need to hear your story

Posted by zozo on Feb 9, 2019 12:41 am

dmarie:
Hi All
Like you Zozo, I have stage three breast cancer with ductal and lobular features. I had a mammogram and physical exam just 6 months before but, because of dense breast tissue, nothing was found. After finding a lump in October, I had a biopsy in November and then a left breast mastectomy and lymph node removal in December. I will start my first round of chemo next Thursday (Valentine's Day!). The plan is that after Chemo I will have 5 weeks of daily radiation and will be on anti estrogen drugs for years (?). 
I am interested in how you are doing with your treatment as it seems I am following along behind you. 
 

Hi dmarie. Yes looks like we're on a similar plan. My chemo started out really well. The first one was a breeze, relatively speaking.  But sadly my white blood cells didn't come back up before my second one and now I have to take Neulasta right after every chemo, and it's hell. I'd take chemo over Neulasta any day. My suggestion to you is to do everything you can to keep your white blood cells up, wear a mask, wash hands religiously, try to cook all veggies and fruit before eating, I don't know. Just do everything  you can to minimize your body's need to deploy your white blood cells. I hope this helps. Other than that, get in the habit of walking. I find that walking helps a lot with the fatigue. 

Re: New here and need to hear your story

Posted by Naan on Feb 11, 2019 12:51 pm

Hi zozo and Christine, I found a lump in my right breast in February of ‘18, mammogram’s and biopsies followed. April of ‘18 was diagnosed with stage 2, grade 3 IDC. Many more tests were done, bilateral mastectomy with immediate reconstruction (DIEP) in June 26th, ‘18. ER/PR neg, HER2 positive, found a microscopic amount in 1 out of 8 lymph nodes. 6 rounds of chemo began in August with Herceptin being introduced on 4th treatment. Will have that for one year, every 3 weeks (be done in October) Side effects have been minimal, neuropathy kicked in after last chemo in December. Fatigue and very emotional during chemo, but that’s getting better. My energy is slowly returning but Herceptin is keeping it down. Glad I’ve made the choices I have and wouldn’t change it. We do what we have to do and face it head on. ❤️🙏

Re: New here and need to hear your story

Posted by Runner Girl on Feb 11, 2019 1:59 pm

Hi zozo‍ , Christine WM‍ ,

Glad to meet you, sorry you have to be here.

My cancer journey started in March of 2018 when my doctor found 2 lumps in my right breast at the chest wall (right where your underwire bra sits).  I had an ultrasound and biopsy and was given the news that I actually had 3 lumps of varying sizes all invasive ductal carcinoma.  I had surgery - lumpectomy and sentinel node biopsy in May.  3 weeks after surgery I ran a half marathon (21.1 km).  I began chemotherapy at the end of July - docetaxal, carboplatin and herceptin.  3 days after my first chemo I thought my ears were going to explode.  The carboplatin was doing some damage.  My second chemo they lowered the carboplatin dose.  My reaction wasn't as bad, but 3 days after treatment I had to stay home from work because my balance was gone.  They dropped the carboplatin from my 3rd chemo and instead gave me cyclophosphamide - it was awful.  My next 3 chemo's were strictly docetaxal and herceptin.  I finished chemo mid November.  I continue Herceptin every 3 weeks.  Mid December I started radiation and finished mid January.  My skin was angry red for about a week after radiation finished, it is now tanned brown and not quite as sore.  I was put on Tamoxifen and take it daily, likely for the next 5 years.  I worked thru treatment and continued to run on weekends, keeping my distance under 10 km as requested by my oncologist.  My fatigue has been minimal, but my ears continue to ring from the damage and likely will for the remainder of my life.

I wish you well in your cancer journey.  Keep hydrated and active, both are very important to stave off fatigue and keep you healthy thru this process.

Gayle - Runner Girl

Re: New here and need to hear your story

Posted by zozo on Feb 11, 2019 4:55 pm

Thank you for sharing your story, Gayle. I was amazed by you running a half marathon 3 weeks after your surgery. But what a difficult journey you've had. I wish you the best the rest of the way!
 

Re: New here and need to hear your story

Posted by zozo on Feb 11, 2019 4:58 pm

Naan:
Hi zozo and Christine, I found a lump in my right breast in February of ‘18, mammogram’s and biopsies followed. April of ‘18 was diagnosed with stage 2, grade 3 IDC. Many more tests were done, bilateral mastectomy with immediate reconstruction (DIEP) in June 26th, ‘18. ER/PR neg, HER2 positive, found a microscopic amount in 1 out of 8 lymph nodes. 6 rounds of chemo began in August with Herceptin being introduced on 4th treatment. Will have that for one year, every 3 weeks (be done in October) Side effects have been minimal, neuropathy kicked in after last chemo in December. Fatigue and very emotional during chemo, but that’s getting better. My energy is slowly returning but Herceptin is keeping it down. Glad I’ve made the choices I have and wouldn’t change it. We do what we have to do and face it head on. ❤️🙏

Thank you, Naan, for sharing your story. Being fatigued is such a big issue. I wish you strength to fight through it. 

Re: New here and need to hear your story

Posted by blossom on Feb 12, 2019 12:40 pm

Hi Naan - Just wondered if you did any special treatments for the neuropathy after your chemo - night time seems the worst for me. Thanks, Blossom