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Inflammatory breast cancer

Inflammatory breast cancer

Posted by Chris62 on May 22, 2020 10:17 am

Hi Everyone, I’ve had access to cancer connection for 5 months now and figured it’s time to introduce myself. 
I’m a 57 year old woman who was diagnosed with inflammatory breast cancer, stage 4 (which has spread to my bones) on Dec 17 2019. I’m on hormone therapy only (Ibrance, letrazole and Zomeda), so no surgery. I had never heard of IBC prior to being diagnosed with it.
I’ve been pretty lucky as I haven’t had many side effects from the medication. My back pain is what causes me issues, but I can usually manage it with pain medication and knowing my limitations. I’ve got a strong support team as well with my husband and 4 kids.  One thing I still can do without any issues is walk which I do on a regular basis. I’ve got 2 large dogs (Leonbergers) and we can often be found walking them around the neighborhood.  They are also part of my support team as when I do have an off day, they are are there by my side.
I’m a pretty optimistic person, and I consider myself lucky that even though I have stage 4, my spirits are good right now. I take one day at a time, knowing that I’ll be riding a roller coaster throughout this new journey life has thrown me.
I’d love to talk to anyone who has stage 4 IBC and compare notes, or just have someone to talk to who is going through the same thing as I am.
 

Re: Inflammatory breast cancer

Posted by Cynthia Mac on May 23, 2020 7:22 am

Hi, Chris62‍ , welcome to posting in Cancer Connection.

It’s good to hear that you’re doing well just now, although, I suspect that you’ve had some “roller coaster days” since they discovered your cancer.

I did a search on your type of cancer and saw that Wendy Tea‍ Has flagged you in another discussion. (You can tag people by typing @right before their name, the way I just did. After a few characters, a drop down will appear with some suggestions. If you see it, you can select the name, and if there are many names with a similar start, just keep typing until it reduces the options to what’s in the drop down box.)

The CCS has a booklet about Advanced Cancer that might offer some help to you. CCS also has supports for caregivers, too, and a new caregivers organization has been started in Ontario. I haven’t looked into that yet, but I may at some point, because I’m caregiver for my Dad who has advanced lung cancer.

Thanks for sharing the message that people can live well even with advanced stages of cancer. 
 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Inflammatory breast cancer

Posted by Lacey_adminCCS on May 23, 2020 8:13 am

Chris62

I'm so glad you decided to say hi and reached out to us. 

I want to introduce you to Beespecial‍ and ‍ Mama Bear‍ 


We are here to walk through this with you. 

Post anytime
Lacey

 

Re: Inflammatory breast cancer

Posted by Beespecial on May 23, 2020 12:17 pm

Hi Chris62‍ 

Lacey introduced us in one of the comments.  I didn't have inflammatory breast cancer, but I did have invasive lobular stage 3 breast cancer upon diagnosis in 2016/17.  Through the whole treatment of chemo, surgery and radiation.  Then in early 2019, I was diagnosed with bone mets, so I'm stage 4/advanced breast cancer now.  I was on letrozole, Zometa and tried Ibrance for 2 cycles -- I couldn't get by white blood cell count up, so they stopped the ibrance unfortunately.  About 2 months ago, I progressed and now am no longer on letrozole. They changed me to Xeloda (or capecitabine). I'm on cycle 2. It's an oral chemo you take at home, 14 days on 7 days off. It's fine, no real side effects.  And I still go for zometa every 3 months. 

Feel free to message me separately, or on here :)

Thanks
Belinda
Belinda

Re: Inflammatory breast cancer

Posted by vic777 on May 23, 2020 3:36 pm

Hi BeeSpecial,

I do not have the same cancer as you but I am also stage 4-mine is lung cancer that I just found out has spread to my back-hence awful back pain.  It hurts a lot and I am told I will meet with a pain specialist after my radiation treatment on Monday.  My biggest issue is that the tumour is lodged between my spine and my esophagus, which in turns results in my being in severe pain to swallow (after radiation treatment that is).  Anyway I was just starting to get back on my feet from 6 weeks of radiation and chemo only to get whammed with this news last week.

I am 100% with you, I am learning to take everything one day at a time.  I also know what I can control and what I cannot and try to remind myself of that whenever I do get down.  I have a kitty not a dog (jealous) and I feel he knows what is going on and is more attentive then usual.

It sounds like you have a fantastic support system and I really believe that that makes a tremendous difference to how you can cope.  I have two sons, one has his head buried in the sand and the other has an anxiety problem but he does try to help-I live alone, lost my partner to cancer 6 years ago, then my sister.  And then of course we have COVID, so we all have so much to deal with; I almost find it funny when the news talks about people having trouble coping with COVID.  I must admit I think-umm try that on top of stage 4 cancer-now there is a test of fortitude.

You just keep going, I'm with you all the way.  My mother used to say, "Great life if you don't weaken!"  So keep standing and keeping going forward.

Ruth

 

Re: Inflammatory breast cancer

Posted by Chris62 on May 23, 2020 4:45 pm

Hi Everyone, Thanks for reaching out and welcoming me the club...
I must admit it is hard to wrap your head around having stage 4. I actually found out about my bone metes prior to being diagnosed with IBC. The scans came in prior to my biopsy results. I had severe back mid back pain that started when I was camping at the end of September. I went to the hospital as soon as we got back, and was sent to physio Which helped a bit, but not much, By the beginning of November, I noticed my bra digging into my breast and my back was still sore.  I went to the doctor where I was scheduled for a mammogram (I had one done in June 2019 and no issues) ultrasound and then a punch biopsy, as well as ct scan of my back.  My first treatment beside the pain meds, was targeted radiation over Xmas to help with the pain. Only 5 sessions, but after about 3 months, the pain started to subside where I didn’t have to use the pain medications as much..except when I sneeze, that is extremely painful and good thing it doesn’t happen that often. 
I’ve had some reactions to letrozole but all have gone away now except for my toes which some of them have turned dark red under the nails. I’ve got that on my list for my next appointment with the oncologist to talk about. 
I’m still waiting for my next set of scans to see how I’m doing since I’ve only had them done as part of my original diagnosis in December. As you already know, thei COVID-19 has everything delayed. My scans were to be done In April but now I’m looking at June, July.  
Things I struggle with is how do I want to spend the rest of my life... do we downsize, do I go back to work, can I even go back to work and function properly, every ache I have I think, “is that the cancer spreading”, will I be able to golf again, etc. 
I appreciate you all reaching out and putting me in contact with multiple people who are going through similar things that I’m going through.  Look forward to  messaging with all of you and learning from you as well.


 

Re: Inflammatory breast cancer

Posted by MedieaVal on May 30, 2020 12:50 pm

Hi Chris62‍! I'm not stage 4 but I am Stage 3 Inflammatory Breast Cancer. I was diagnosed in October 2016, just 4 months shy of my 62nd birthday. I had chemo followed by a modified radical mastectomy and then radiation. My last radiation was July 4 2017 and I started hormone therapy that month as well: anastrozole. I'm doing well presently. Aches and pains, neuropathy etc but overall life is good. I have a dog as well and walking is one of my favourite pastimes. I live in Edmonton and had all my treatments here so I count myself lucky that I didn't have far to travel. I was on medical disability for awhile and then retired. My husband retired during my treatments so we just try to enjoy life daily. I found that I really wanted to connect with people who had Inflammatory Breast Cancer and there aren't that many on here! I hope to hear back from you.

Val

Re: Inflammatory breast cancer

Posted by Chris62 on May 30, 2020 1:45 pm

Hi MedieaVal‍, thanks for reaching out and IBC is pretty rare. I’m doing fairly well with my hormone therapy as well. I’m still on medical leave and have been thinking about if I will end up going back to work or not. My biggest issue is I can’t sit or stand for that long because of the metes on my spine. Walking doesn’t seem to bother me right now, which is good. Not sure what Id do if I had long term problems with walking. I try and do what I can for now while I still can.  It’s still scary having IBC and on top of that stage 4, but lots of people have lived long lives with stage 4 and i hope I’m one of them.
my mom had premenopausal breast cancer with chemo, radiation, lymphoma mastectomies, etc. saying that, she always had a positive attitude and lived 32 years with her cancer going into remission and coming back again multiple times. She and I lived together after my dad had died, so was familiar enough witch her treatments etc. it was so different than it is today. You were more like a number in those days. I find so far everyone in the medical profession I’ve talked to have been great. 
I live just outside of Ottawa in a small town called Kemptville, and there are tons of provincial parks, and regional parks to take the dogs for walks. We had bought a camper a few years ago which the pups love, as do we. I guess timing was good as it looks like camping is one of the safer vacation trips we can now do thanks to Covid. 
thanks for reaching out, and let’s keep in touch. 
cheers
chris

 

Re: Inflammatory breast cancer

Posted by Kims1961 on May 30, 2020 4:57 pm

Hello Chris62‍ !  Not sure if 62 is just a random number or year of birth? I’m a 61....so 59 yr old this year.

The decision to return to work or not is a big one. I was diagnosed with IDC , stage 2 on my 57th birthday.  Each time, I thought i was ready to go back to work..BAM...some side effect or complication arose.  I eventually returned and after a year of working, I am retiring.  There is a really good tool that helped me to look at a number of factors before returning.  I was fortunate i had a great staff, who were supportive and i enjoyed my work, so that was my incentive, but now i also see the benefit of doing things i enjoy and living simply.

The website is:  https://www.cancerandwork.ca

Please keep us posted on how you’re doing.  :)

Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Inflammatory breast cancer

Posted by Chris62 on May 31, 2020 1:54 pm

Hi Kims1961‍, thanks for the link on going back to work. I just finished watching a string of videos they had. There is a lot of good information in there and will continue to look at other area of this web page.

cheers
chris
 

Re: Inflammatory breast cancer

Posted by Lyne on Jun 1, 2020 6:32 am

Good morning Chris62‍ ,
I am sorry to welcome you to the club, it's a surreal place to be.  I am now 60, was diagnosed in 2017 with Stage 3 triple negative IBC, my current diagnosis is Stage 4 metastatic, triple negative breast cancer, as in November 2019 my cancer metastasized to my pleura and lung.  But to me, these are just labels, a way to put a name on a scary disease. No hormone treatment, the triple negative indicates that my type of cancer does not respond to hormonal treatment, I had chemo, radiation and double mastectomy.  I am currently taking oral chemo, Xeloda (capecitabine).  I don't do well with pain med, so I've tried but then ceased to take Hydrocodone.  I can deal with the pain so far, so find other ways to work through it when it happens, but sneezing and coughing are pretty intense LOL 
Like you, I have a great support team and two cats...  I do envy you the dogs, because they are so much more affectionate.  I think my cats know that something is going on and seem to stay away rather than cuddle.  I'm thinking of trading them in LOL 
Beautiful area where you are.  No wonder you like your walks!  I am in Hamilton, we have lovely trails but right now, I'm limited to "around the block" as my breathing interferes. 
But it's so nice to finally see green leaves and flowers!  It doesn't really matter where you walk, one gets to enjoy the outdoor! 
About the return to work... I returned to my job that I love in July 2018, a progressive return, until September 2018 when I started full time again. 
Everyone was telling me that I was crazy, but I needed closure.  I'm not sure what the benefits are for you, but if you qualify for long term disability (LTD) through your employer, take your time before returning, make sure that you are indeed ready to return as it is hard.  Simply put, doing the work around the house and such is not the same as being at work.  There is no time (or place) for a nap! 😁 But seriously, you spend a lot more energy at work than you might think.  Discuss the feasibility with your medical team and their advice. If it means that you continue on LTD than so be it, you can re-prioritize where you put your energy and how you live your life.
When I was advised last November that the cancer had returned, I finished the projects I was working on from home.  In late January I downloaded my contacts from my work cell to my personal one, cleaned my computer and disconnected from work.  It was very difficult for me, I didn't think that I could do it, the last time that I was off I stayed connected throughout the treatments and recovery.  This time I decided, well, my new diagnosis did, that I needed to focus on my family and friends, enjoy my life as I could and move along with what I have.  I find that I have a lot less anxiety than I thought I would, and realize that maybe it was time for me to live.  And then Covid hit, and all of a sudden everyone is home!  . 
Today I am going for a contrast CT scan, and hoping that the results are positive, the last one showed that the chemo had shrunk the tumours a bit, so fingers crossed that there aren't any new ones. 
I don't post often, I read but don't often reply, but something you said in your posts hit me, as yesterday I was cleaning my PC and found a document where I had said exactly the same thing.  I wrote "Every time there’s a different twitch or ache my brain goes “hey, what’s that, is it a symptom for another form of cancer?” It makes it hard to live when you die about a hundred times a day."  I'm glad to see that I'm not the only one who thinks like that! 
Please feel free to message me if you want to chat, I'd be happy to.  Take good care and enjoy the warmer weather that is coming our way, while social distancing of course! 😁 

Re: Inflammatory breast cancer

Posted by Chris62 on Jun 1, 2020 11:43 am

Hi Lyne‍ , Thanks for your post. I’m keeping my fingers crossed that your scan results are positive as well. 
I’ll be moving from short term disability to long term disability end of this month. My coverage is pretty good through work so far.
I still keep in touch with the office.  I can’t disconnect yet even though I’ve been off since December.  I know if I do go back, I’ll be asking to work from home and not the client site, with me white and red blood cells being so low too much risk being at the office. That means, the customer I support will change, but I’ll still be able to do similar work from home on a different account. The job is very stressful, but I’ve been doing it for years, so you kind of get used to the stress. That’s one thing that was hard to adjust to since I’ve been off. Now that I’m adjusted, I kind of like the slow pace and having time to focus on me. 
as I mentioned I walk my two dogs about 3x a day right now. We’ve been sticking to the neighborhood since COVID-19 but will change that up to hiking a few hours a day.  
it’s funny, my back is sore if I sit in a hard back chair, like the kitchen or dining room chairs. Most I could do is about 20min and I’ve gotta get up. Same with cooking. I love to cook, but if I’m standing up not moving for more than 20 mins, but back is so sore.  Yet, I walk or hike, and I don’t have that issue. What’s up with that lol? So, like you, I figure I’ll keep walking until my body or doctor tells me to stop. 

Keep us posted on how your scans go.
cheers

Chris,
 

Re: Inflammatory breast cancer

Posted by Yuliya on Jun 1, 2020 5:28 pm

Hello, as much as I don't want to belong to this club, I have a gut feeling that my place is here. I dont have official diagnosis yet, but symptoms are classical - red tender spot just above my areola and pain in my armpit. The spot appeared last Sunday. I contacted my family doctor and sent her a picture. On phone she said it must be a dermatitis ( ha I wish)I hope she will not give me antibiotics but send me right to do mammography. Ladies, what was your IBC symptoms? No lump still cancer. Thank you

Re: Inflammatory breast cancer

Posted by Simi on Jun 2, 2020 5:32 am

Yuliya‍ Hello I want to encourage you to have that spot investigated , if the mammogram comes back all clear demand  a biopsy , I have a similar story beginning of 2019 I had something like a rash ( red , raised , thickened Flat spot, itchy , burning and painful  ) on my Areola I did not have a lump   I was diagnosed with dermatitis my mammogram And ultrasound came back all clear But I knew something was wrong And I wasn’t satisfied with the results and I demanded a biopsy and MRI both came back positive for breast cancer , Hope in  your case Your doctor is right but make sure you have all the tests done and a biopsy would give you a definite diagnosis ! 

Re: Inflammatory breast cancer

Posted by Chris62 on Jun 2, 2020 9:19 am

Hi Yuliya‍, Couldn’t agree more with Simi. I went to the doctors because I noticed an indentation on my breast from my bra. My breast was swollen, warm, red and my skin had that orange peel look. I did not have a lump. I had a mammogram 6 months before that and did not expect breast cancer. My doctor sent me for another mammogram, ultrasound and biopsy. Mammogram did not show anything, and ultrasound should some thicken only but was inconclusive. The biopsy Is the only thing that showed I had IBC. 
As Simi mentioned, let’s hope your doctor is right and it’s not cancer.

cheers
chris

Re: Inflammatory breast cancer

Posted by Yuliya on Jun 4, 2020 12:43 pm

Simi‍  and Chris62‍  thank you for answering my question. My family doctor got mammogram and ultrasound appointment for me at our local Breast Clinic for next Tuesday.