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Inflammatory breast cancer

Inflammatory breast cancer

Posted by Lala82 on Jun 13, 2020 10:27 pm

Hello all 
I am Leah . Ive just turned 38 . I started chemo in May and was diagnosed in April with Inflammatory breast cancer on my right breast . I am hormone negative but her2+ and waiting to get my genetic testing done. As far as I’m aware it’s in my auxiliary node but no further.   I have one more round of a/c then start taxol and herceptin after. It’s been quite overwhelming and exhausting. I am mother to a special needs nearly teenager and a busy 5 1/2 year old daughters. I went of leave from work to care for my children because school closed and I lost all support.  Then all this started And life went sideways. I’m learning to pace myself and ask for help which is a little tricky now as you all know .  I look forward to reading your stories and hope to connect with you . Thank you for being here . 

Re: New to the group

Posted by Wendy Tea on Jun 13, 2020 10:41 pm

Lala82‍  I am sorry to hear what life has thrown at you. My son and daughter-in-law are 38.  I am here for you whenever you need to talk.  There are some great gals and guys here and we love to laugh,  cry, share, rant, and help each other. 
Healing takes time and opportunity. Wendy Tea

Re: New to the group

Posted by Yuliya on Jun 13, 2020 11:03 pm

Lala82‍  Hello and welcome! You will find help and support here. Please join our discussion about inflammatory breast cancer here.
https://cancerconnection.ca/discussions/viewtopic/39/65393

Re: New to the group

Posted by Whitelilies on Jun 14, 2020 10:51 am

Lala82‍ Hello
welcome to this site....and sorry for the reason.
You are in a safe, caring community here....we ALL support one another.

I TOO have a special needs son.....well TWO, to be honest....both have Autism.
(21, and 19)...a bit older than your daughters.  YUP this put added "stress" (term used loosely !!) on our "journey" (for lack of a better word/description)....
I am fighting Colon Cancer....Oncologist said he got it "out"....I am now in the 5 year Survivorship Program....still filled with stress, appts, and anxiety.
Bowels on the fritz.....food is not  my friend....

Keep posting...we are listening....

Warmly,
Whitelilies

Lillian

Re: New to the group

Posted by cancertakesflight on Jun 14, 2020 11:17 am

Lala82‍  Welcome. As everyone else has said, you do have a lot on your plate. Good for you for asking for help. Some people struggle to do that, but as you pointed out, even if you ask, it can be hard, given the circumstances; however, depending on where you are, that might be getting better for you with some restrictions being loosened a bit. 

I was diagnosed and treated for breast cancer in 2011 and there hasn't been a recurrence. I have a mastectomy, chemo, and radiation and, because I was hormone positive, I took tamoxifen for 7 years. I just recently had a hysterectomy and I had my ovaries and tubes removed the previous year, because my estrogen levels were still too high. I had cancer in my two sentinel nodes (above the breast on the chest) but none in the axillary nodes (armpit ones). I had both DCIS and IDC, which means I had cancer inside and outside of my ducts; however, it had spread too far throughout my breast to do anything less than a mastectomy, and I am okay with that. 

I was diagnosed with breast cancer when I was 49 and I had not had my first mammogram yet, since they don't start regular mammograms (at least in Ontario) until age 50. 

Great Yuliya‍ for sharing a link to the Inflammatory breast cancer discussions. Whitelilies‍ thank you for sharing your story. I keep learning more and more about you.

Lala82, I hope the fact that I have no evidence of disease for nearly 9.5 years should provide you with some kind of comfort. 

Please reach out with any questions. As Wendy Tea‍ has said, we are here for you regardless of whether you want to ask a question or share your emotions. 

cancertakesflight
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: New to the group

Posted by HermMar on Jun 14, 2020 11:42 am

Hi... welcome.  I was diagnosed with colon cancer in Nov 2018.  Started chemo Jan 2019.  My ex decided to separate five months after my last chemo.  
So much stuff I’ve experienced in the last 18 months.  I have learned to let go of things that are not important and to forgive.  
When I was told I had cancer, nothing else mattered.  I was recently told by my oncologist two weeks ago that I am cancer free but will need to be monitored for the next. four years.  
Take it one day at a time.  
if you ever need someone to talk to, reach out to this group.  If it wasn’t for the recommendation of Wellsprings to see a psychotherapist, I will not be where I am today.  

Re: New to the group

Posted by Whitelilies on Jun 14, 2020 5:46 pm

Lala82‍ Hello
So many have shared.....we have all listened.....read and supported.....
I KNOW it is extra hard now, with no school/day program.  My son who really NEEDS the support of an adult day program, is "lost"....no routine, no reason to get up.
(Just cling more to me)
Keep strong.

HermMar‍ Hello
I read and re read what you shared. Well, nothing will "shock" me ever again.  "He" left 5 mo after chemo.....my gosh......slam the door on his way out! toodles.
Forgiveness is divine.....
You are strong.
I too am in the Survivorship Program....approx 4 years left.  Every 6 months CT scan and Blood work (CEA).  Next one: Sept....hope the backlog is cleared? hope they dont cancel me too?  hope they find a treasure chest! filled with gold coins "up there"/in my colon zone!

Regards
Whitelilies

Lillian

Re: New to the group

Posted by Kims1961 on Jun 14, 2020 6:41 pm

Lala82‍ Such a great photo!  Love that pink hair :)

Wow...you do have so much on your plate.  I'm glad you are reaching out for help.  There is a great book called "The Art of Asking by Amanda Palmer" and it basically encourages to ask for what we need.  Most people are happy to help and to have a specific request makes it easier.  Again - all people can say is "no" but they may know someone else that can help.

I had bilateral mastectomy for cancer in my left breast - IDC - ER+ and HER2+.   Have you had a Herceptin treatment yet? Congrats on getting closer to having chemo finished!

Please feel free to reach out here with any questions or just wanting to share or vent.

We are here and we are listening! Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: New to the group

Posted by Lala82 on Jun 14, 2020 7:23 pm

I am currently round 3 of 4 red devil / cyclophosphamide every two weeks . Then go to 3 or 4 of the taxol / herceptin every three weeks . Waiting on genetic testing, then surgery , then radiation, then herceptin for a year . Round three is kicking my butt with fatigue and slightly more bone pain. And the shots don’t help me feel much better either.  So glad there is only one of these left . I’m still eating fairly well and hydrating but just don’t have it in me to work out like I used to . Weeks 1 & 2 I was still indoor cycling 30 mins a day . Can’t even get on it this week . Everything tires me out . I just have to remind myself it’s one day , one moment, one breath at a time and that I’m doing it . That’s all that matters right now . 

Re: New to the group

Posted by HermMar on Jun 14, 2020 11:14 pm

Whitelilies‍  hello....
I just completed my one year cancerversary in June 2020.  The last time I spoke with my oncologist, he said my CT scan will be every year from now on (for the next four years).  Is yours still every six months.  I wonder if I need to mention this to my oncologist.  
thanks.  

Re: New to the group

Posted by MedieaVal on Jun 15, 2020 10:39 am

Hi Lala82‍ . I'm sorry you're having to deal with this. I too have Inflammatory Breast Cancer. I was diagnosed in October 2016, ER+, HER2 neg. I had chemo, surgery and radiation and am now on hormone therapy. Overall doing well. Where are you located? 

Re: New to the group

Posted by Lala82 on Jun 15, 2020 11:05 am

I’m located in North Vancouver BC and luckily being treated at the hospital that’s only 10 minutes away . 

Re: New to the group

Posted by Whitelilies on Jun 15, 2020 11:32 am

Lala82‍ Hello
I wish you strength...each and every day.....I TOO had Genetic Testing done......they said results take 90 days (and nights !).....mine took 86 !.....they gave me true numbers.....They were "searching" for Lynch Syndrome genetic markers......ZERO !  Party Time.

HermMar‍ Hello
RE: CT scans every year?  Every 6 months?
I believe it is based on individual needs.  I also believe and FEEL in my heart....that I am "tossed aside" from my Oncologist's Office.....nice man/super skilled......makes room for NEXT patient.  I am placed in the Survivorship Program.   There, I see a Nurse (specializing in Colon Cancer)....and she books all my appts.....CT scan, CEA bloodwork etc.  I THOUGHT ALL patients were every 6 months.  Had no idea, some are yearly.  You are LUCKY !  Dance the night away!
I dont know anyone else at this Clinic, to ask.  So, I just follow the instructions given me.....and I go every 6 months.  Last appt was "virtual"/on phone.....

Regards
Whitelilies

Lillian   

Re: New to the group

Posted by HermMar on Jun 15, 2020 12:13 pm

Whitelilies.... yes I have now yearly appointment and yearly CR scans. I  had to call the nurse back to double check as I was told after I completed my last chemo that scans are every six months.  My CEA was 0.8 the first time and 0.5 a month ago.  I think that is why he said In cancer free.  Were you also told by your doc that you are cancer free? My last appointment too was over the phone.  Do all hospitals have the survivorship program?  I would like to inquire.  
I don’t have any issues other than neuropathy on hands and feet.  Worst on the feet.  
Do you know of any support group for colon cancer?   
Thank you.  

Re: New to the group

Posted by Whitelilies on Jun 15, 2020 2:38 pm

HermMar‍ hello
CCRAN.org for support.......
Meeting one Sunday per month......now via Zoom.

I have NEVER been told I am "cancer-free" by anyone.  Sure WISH IT THOUGH !!
My last CEA was 1.9
I did not even know it can go as low as 0.5
BE HAPPY.....nice and low is BEST.
Wishing you all best, every day.....

Warmly,
Lillian

Re: New to the group

Posted by Whitelilies on Jun 16, 2020 10:36 am

HermMar‍ Hello
Not sure if I responded to this.....Do all hospitals have a nurse-Navigator?
I am unsure.....call or check on line if "your" hospital does have one.
My hospital had TWO !! One focused on Breast/questions......One focused on Colon/questions.  Their ONLY role is to answer concerns from patient....they are qualified nurses....you can email direct, call them direct, meet them direct.  They also have a WEALTH of knowledge and supports to share.  They may also be able to point you towards a support group, near where you live. 
My Navigator was on my SPEED DIAL !!

Warmly
Lillian
Whitelilies

Colorectal Cancer support groups

Posted by Lacey_adminCCS on Jun 16, 2020 11:26 am

HermMar‍ 

Nice to meet you! So glad you have met Whitelilies‍.

We have a Community Service Locator where you can search for support groups here is a link: https://csl.cancer.ca/en.

Have you made it over to our colorectal cancer forums yet?

I hope this helps,
Lacey

 

Re: Inflammatory breast cancer

Posted by HermMar on Jun 16, 2020 3:42 pm

whitelilies.... how do I tag you in my reply?   Thank you for all the information.  I spoke to Filomena today from CCRAN and she was great.  I didn’t know someone like her is willing to advocate for me in terms of my health.  Cannot wait to attend the monthly meeting  
🙏🙏🙏. 

Lacey_adminCCS.... I will  definitely check out the forum for colon cancer .  Whitelilies already  recommended CCRAN.  Should I sign up to more than one support group?  Thank you.  

Re: Inflammatory breast cancer

Posted by Lacey_adminCCS on Jun 16, 2020 3:58 pm

HermMar‍ 

To tag someone type the @ symbol and the person's username. 

I'm so glad you got connected with a group. You can look into what's available and attend as many as you find helpful. Many people find a variety of different types of support helpful. I'm so glad you're reaching out. 

Lacey 
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