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More than the leaves changing colour

More than the leaves changing colour

Posted by Dodi on Oct 15, 2020 1:43 pm

I haven’t written here in a while. I have been following peoples experiences and the daily struggles and successes they have experienced. I started a “ pre” diagnosis back in May, consults have been in for that length of time, 2 mammo, another one booked, multiple ultrasound appointments and another one scheduled for 9 November... have no idea who has ordered it at this point. I have been continuing with sending pictures to my clinician of any breast changes. And recently sent her 3 different dates photos. I get concerned when I see and feel things and yet, I feel so much like I am just waiting in the que..... 
I have to hope that my number gets called soon, as I am sure others are as well. I have had the lumps still in my right breast, nipple changes still present, burning sensation like a sun burn inside my breast is constant and now I have what I thought looked like a bug bite or hive on my breast which I took photos of so I could look for changes.. and there was a day later. Got more wide spread than when I first took note of it. This morning I woke to it looking like an area of my skin was starting to seem pinkish( don’t know what to call it).  So again another series of photos sent to my clinician. The issue I currently am faced with is my clinician isn’t in the office full time yet with the pandemic so I have no idea how long things take to get seen by her. If I call to get an appointment to get seen, I must endure a telephone interview first and then if she feels I should be seen, then I am booked another appointment. I understand that so many things have changed. I was supposed to be referred to a general surgeon if the wait was going to be long for the breast health department, but I don’t know if that has even been completed yet. 

sorry for sounding like a downer, I am concerned about the wait time with everything and hoping things don’t get missed. I would just like to see someone, anyone who can help me figure out what is going on... sigh. Is there anyone who has been diagnosed with Inflammatory Breast Cancer that could shed some light on signs and symptoms they have experienced? This now is one of my concerns. That something more is about to pop out on me.

thank you all for listening 

Re: More than the leaves changing colour

Posted by ashcon on Oct 16, 2020 3:20 pm

How frustrating that things have been dragging on for you and that you are still waiting for some definitive answers and help. I know you said at one point that you had been struggling to get more answers on your family history because you are adopted. Did that information ever come through? (Forgive me if you already mentioned this elsewhere and I missed it).

I'm glad you have checked back in here.
I did not have IBC (I had triple negative) but perhaps Buddy65‍  MedieaValLala82‍ or Peanut‍ could shed some light on signs/symptoms they experienced with their IBC diagnosis?
---- "Nothing ever becomes real till it is experienced." ----

Re: More than the leaves changing colour

Posted by Poppy2222 on Oct 17, 2020 6:05 pm

I understand your frustration and how hard the waiting is. I’ve just been diagnosed with breast cancer. I have not had a meeting or call from a specialist although I’m apparently on 3 lists.
The waiting is so difficult. I’m afraid to be away from my phone.
Im experiencing panic attacks. Trying to get life in order as I have no clue what the plan is

Re: More than the leaves changing colour

Posted by Wendy Tea on Oct 17, 2020 6:26 pm

Poppy2222‍  Welcome. I had a mastectomy 18 months ago and walked 8 kms this morning.  There is hope. How was your cancer discovered?  Do you know the next steps or are you waiting to hear the plan? Do you have voice mail with your name on the message? That is the only way my team would agree to leave messages. 

Re: More than the leaves changing colour

Posted by Wendy Tea on Oct 17, 2020 6:47 pm

Poppy2222‍  So as I understand it you have had a biopsy and diagnosis.  Things will happen very quickly.  Test after test after appointment and then a surgery date. If you are uncertain you can call your family doctor. Here is the link to breast cancer discussions under Forums. 
Take this time to eat healthy,  hydrate, exercise,  sleep, chat with friends and family.  Most of us found cleaning closets, drawers, shelves kept us distracted. 

Re: More than the leaves changing colour

Posted by MedieaVal on Oct 22, 2020 5:18 pm


Hello, I have to apologize for taking so long to send this message. I was diagnosed with Inflammatory Breast Cancer almost exactly 4 years ago. I had never heard of it before that. If you suspect that it is Inflammatory Breast Cancer you need to really push to be seen. Mammograms mostly don't pick up Inflammatory Breast Cancer. You would need an ultrasound and a biopsy of the breast, lymph node possibly and skin. Mine came on very suddenly. Bright red mark on my breast that double from loonie sized to double that in 2 days. Then in a few more hours there was swelling, peau d'orange skin and a lot of heat. I was very fortunate. I first noticed mine on a Saturday. On the following Monday I saw my doctor who sent me for a mammogram and ultrasound. She suspected right away that it could be Inflammatory Breast Cancer. The tests further indicated that and I was seen by a breast surgeon a few days late and an oncologist about a week after that. I was very lucky that my doctor was on top of it.

If there is anything else I can help with, let me know. PM me if you want. Maybe ask to be put on a cancellation list to speed up your appointment?

By the way, I had chemo then surgery and then radiation. I am presently on and aromatase inhibitor because my cancer is hormone positive and we need to suppress my body from making hormones.



Re: More than the leaves changing colour

Posted by Dodi on Oct 24, 2020 10:47 am

Thank you Val! I will message you further sometime either today or tomorrow 

Re: More than the leaves changing colour

Posted by Peanut on Nov 23, 2020 1:28 am

The signs I had was a red spot on the outside of my breast and my breast was sore when laying on stomach.  I had a lump but my breasts were lumpy before so I really didn’t notice a change in the growth at the time but in hindsight I realized I missed that change.  Inflammatory doesn’t usually present with a lump but it can in some cases.  My lump was 6cm on an MRI and 5 cm on an ultrasound.  The good news was that after having chemo nothing was left in my breast.  It was then that I realized it had been a long time since I had felt my breast like that.  My breast had become heavy too which I missed.  I have no idea how long it was there for.  I had a mastectomy at the end of February followed by radiation.  I am still NED.


Re: More than the leaves changing colour

Posted by Dodi on Nov 23, 2020 2:41 am

Thank you peanut. I keep being sent for ultrasounds. Had another one last week and they want me to go I again in May for both a another bilateral mammogram and an ultrasound.I recently had spot on my breast that my doctor could explain. But going now it will get better. I am wait for a referral to a doctor in the valley. Don’t know when that would be.