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its inflammatory

its inflammatory

Posted by Hezz on Mar 18, 2020 10:35 am

Hi all...
Everything changed on Monday when I went to visit my second oncologist and plastic surgeon to talk about immediate reconstruction when I have my massectomy. My tumor had doubled in size since my last scan just 2.5 weeks ago. I spoke to my primary oncologist on the phone yesterday morning and they are calling it Inflammatory Breast Cancer instead of IDC.
Apparently this is much more serious, spreads faster and means no reconstruction for the foreseeable future. And chemo will now be a definate. This change was a bigger blow than my cancer diagnosis!
My surgery is now considered critical and they are trying to pull together a team and OR amid all this pandemic stuff. Normally, chemo would be first, but they dont want to risk it with my heart disease and COVID-19. So for my body it will be a hasty complete double massectomy and lymphoid removal followed by chemo in a month or so.
Silver lining is my nurse navigator is mailing me prosthetic boobs LOL and my hubby and I bought a new home yesterday.
Has anyone had their diagnosis change too? How different was the cancer battle with inflammatory?
H :)

Re: its inflammatory

Posted by MCoaster on Mar 18, 2020 11:44 am

Hezz‍   I can only imagine how  awful it is  that what was a bad diagnosis is changed to an even more concerning one.   Here is my input for what it is worth.   At the moment hospitals are ramped up for the worst case scenario which has not yet arrived.    All elective surgery is canceled and the hospitals are almost empty and cleaned and your team have prioritized you.   You and your family are in shock and terrified because having got used to having to face one thing the circumstances are now much worse.  Now though you are organized and have a support group, including this, to rely on and you can look forward to starting your life after treatment in your new home.

Sending healing thoughts and hugs (at more than the socially appropriate distance).

Love and be kind to each other.

Margaret
 

Re: its inflammatory

Posted by Essjay on Mar 18, 2020 7:32 pm

Hi Hezz‍ im sorry it wasn’t better news...

Theres a couple of ladies who are dealing with inflammatory breast cancer who may be able to offer some pearls of wisdom Peanut‍ and MedieaVal‍ 

Good to hear your positivity - a new house is exciting!

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

Re: its inflammatory

Posted by Kims1961 on Mar 18, 2020 9:42 pm

Hezz‍ In the early days when i was diagnosed, it seemed that at each appt. the news kept getting "worse" or should i say, more challenging.  Sometimes it would take me completely off guard - so i understand when you say it was a bigger blow.

On the silver lining side, a team is gathering that will remove that fast growing tumour.  My cancer was IDC and I had bilateral mastectomy first followed by chemo and then radiation.  Surgery was not as difficult as i thought.  Afterwards, it was the drains that kept me busy - draining them and trying to keep them out of my way. 

A new home and new boobs ...not many get to say that in the same sentence...lol...I hope you enjoy both. A new home is a great distraction - when will you be moving?  

Please keep us posted on how you're doing.  Take care, kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: its inflammatory

Posted by Never Give Up on Mar 19, 2020 9:48 am

Sorry to hear Hess, hope everything works out well well for you.

Re: its inflammatory

Posted by ashcon on Mar 19, 2020 10:36 am

Hi Hezz‍ 

It's been a few days since you heard the change in diagnosis - how are you holding up?
Just wanted to give you a show of support as well, based on my experience with change in diagnosis.   At time of diagnosis it was thought I had a straight-forward, "normal" type of BC.  After surgery and pathology, it turned out to be Stage 3 triple negative.  Difficult to treat, not a good prognosis.  The surgeon did not remove enough lymph nodes, so had to go in for a second surgery after my rounds of chemo were done.
In addition to the fear, I was surprised at how angry I felt.  Not at the the surgeon, or my medical team, but at the cancer.

I will tell you what my social worker told me:  it is early days for you, and it is not uncommon to hear more bad news than good news at this stage, as more information about your cancer unfolds.  And it sounds like your treatment plan will not be compromised because of COVID19.

Congratulations on the new house!  I, too, had a double mastectomy and bought some prosthetics, but (to be honest) I never use them. 
Will you investigate reconstruction later? Or remain flat?
---- "Nothing ever becomes real till it is experienced." ----

Re: its inflammatory

Posted by MedieaVal on Mar 22, 2020 3:09 pm

Hezz‍ hello! First, I am sorry you've been diagnosed with this. It is a scary disease and you do have to be careful. I'm a willing ear if you need one. I live in Edmonton.
I was diagnosed with Stage 3 Inflammatory Breast Cancer on Halloween 2016. It was a whirlwind of tests and wrapping up work. I was lucky, my doctor recognized it pretty much right away as had I from googling, lol. There is a lot of information on this site, however I have found wonderful support from a worldwide Facebook group that is all Inflammatory Breast Cancer people. I recommend it because a research scientist is one of the administrators so they don't allow any nonsense and there were times when I just needed a fellow IBC patient to chat with. It is different from other breast cancers, as you are finding out. There is also a Facebook group for Canadians that is not quite as active and doesn't have the research scientist admin. It is nice to connect with fellow Canadians and you could even find someone who lives close to you. There aren't that many of us.
I was ER+ PR+ and HER2-. I had chemo, followed by a single mastectomy and then radiation.  A double mastectomy is not recommended for IBC because it doubles your chances of infection and treatment needs to move quickly. I am now on an aromatase inhibitor.
I also recommend an app that you can download for iphones or androids that has the standard of care for Inflammatory Breast Cancer. It is called The IBC Network. Or you can google The IBC Network Foundation.. I am concerned about the surgery being done first as IBC can be spread through the skin which is one of the reasons for being treated with chemo first.
I don't know your health issues but I did see that you have heart disease as well as kidney disease. I don't know where you are being treated but it might not be a bad idea to ask for a second opinion. It is really not recommended to have surgery first. Having said that, you need to have things happen quickly.
Wishing you all the best! I finished radiation in July 2017. Since then I've seen 2 of my 4 kids get married, traveled to Europe and the US and I just got back from a Panama Canal cruise. Hope Always!
Val
 

Re: its inflammatory

Posted by Peanut on Mar 30, 2020 1:17 am

Welcome Hezz‍!  I haven’t been on this site lately so sorry I haven’t responded to being tagged.  I would echo MedieaVal‍ that it is concerning to do surgery first.  IBC is rare and is often not treated properly b/c oncologists don’t see it that often.  The best advice I got was to educate myself and advocate for the right treatment.  I also belong to the facebook group Val mentioned and have the app.  It helped me to advocate for my level 1 and 2 lymph nodes to be removed as my surgeon wasn’t going to do the right surgery until I showed him a research paper from the international consensus on treating IBC.  I believe there are women on the FB group that also have heart issues that have gone through chemo.  I also echo Val about not doing a double mastectomy.  It is contraindicated for women with IBC as it can slow the process down and delay radiation.  Please go to the IBC Network page and read the medical papers on treatment.  

As for being blindsided by your diagnosis I completely understand that.  I’ve been there.  I also felt very alone with my diagnosis b/c it was so rare.  Once I found the FB group I no longer felt so isolated.  I’m about 7 months into my treatment and will be having radiation in another 10 days plus I’m doing herceptin every 3 weeks until the end of the year b/c I am HER 2+.  I can say chemo was not as bad as I expected and I’m glad I did it.  I had a near 100% response to chemo and 9 out of 9 lymph nodes were clear of cancer.  My doctor said I am the poster child for neo adjuvant chemo b/c my response was so high.  I did 4 AC and 4 TH over 4 months where my tumour started at 6X6X6 and at time of surgery it was less than 1 mm with a spec of cells undergoing changes from chemo.

Best Wishes!

Peanut

Re: its inflammatory

Posted by ashcon on Mar 31, 2020 3:56 pm

Peanut‍ 
Congratulations on the great self-advocacy work, and on the wonderful results of your treatment plan to date.  Your story is so encouraging to so many.
I had stage 3 triple negative and I cringe whenever I hear other BC survivors say "well at least I didn't have triple negative - that's the worst". 
The good news -  I am approaching 2 years of NED. This flippin disease can be told who's boss, and I'm glad to see you are doing just that!

I'll be thinking of you when you start radiation. Do you know what your radiation treatment plan looks like yet?
---- "Nothing ever becomes real till it is experienced." ----

Re: its inflammatory

Posted by Essjay on Mar 31, 2020 9:56 pm

Hezz‍  just checking in - how are you doing?

Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: its inflammatory

Posted by Hezz on Apr 1, 2020 1:46 am

Hi everyone...
It's been a whirlwind. Surgery has been pushed up, then delayed, then pushed up, then cancelled, then rescheduled and finally pushed up. Everytime my phone rings my heart skips a beat!
Our province seems to be over-preparing for COVID-19 by emptying the hospitals and shutting down half of the ORs. My oncologist is still committed that surgery first is the best plan for me. I appreciate his commitment while everything else is so chaotic.
I found out this morning that surgery was pushed up one last time to my original date...oh the drama! Tomorrow I go in for mapping and Thursday I have surgery. I've been moved to a hospital with "optimal isolation" instead of the main hospital which is COVID-19 central.
I'm oddly excited LOL! Isn't that weird?
Tomorrow I will video an update for my church family (I am a pastor) and ready myself for the next phase of this journey.
Thanks for checking in on me!
Hezz :)

Re: its inflammatory

Posted by Lianne_adminCCS on Apr 1, 2020 12:38 pm

Wishing you well with your surgery Hezz‍ .

Look forward to your updates when you are up to it.

Lianne

Re: its inflammatory

Posted by Essjay on Apr 1, 2020 12:47 pm

Good to hear from you Hezz‍ 

Good luck with the surgery xx
Triple Negative Breast Cancer survivor since July 2018

Re: its inflammatory

Posted by Peanut on Apr 2, 2020 12:24 pm

ashcon‍  I start radiation on Tuesday and will have 28 treatments.  I feel like this is my last big hurdle even though I’m still getting herceptin every 3 weeks until November.  I’m hoping I can continue to stay healthy and avoid any exposure to COVID as well.  I have to stay in a hotel during the week as my treatment centre is 3 hrs away so that also makes it a little higher risk but the place I’m staying is no longer accepting new reservations and most people have cancelled so I pretty much have the place to myself.

Peanut

Re: its inflammatory

Posted by Lianne_adminCCS on Apr 2, 2020 3:17 pm

Peanut‍ 

I am so happy to hear that the hotel is still an option for you during your treatment away from home.
Please keep us posted as you go through this next hurdle/milestone.

Lianne

Re: its inflammatory

Posted by MCoaster on Apr 2, 2020 4:23 pm

Hi Hezz‍  

I think you should rename yourself Dorothy but I hope you don’t end up in Kansas.  (Wizard of Oz!).
Seriously though you have been, as you say, in a whirlwind.  

It is so good that you will have your operation tomorrow as it will you then be able to move forward.   The hospital will have been well cleaned and everyone will be extra alert for the virus.  It is reassuring that hospitals are being identified for individual needs.  

I wish you well tomorrow.   Many people, of whom I am one, feel a tremendous feeling of relief after surgery as we know that we are on the road to recovery.

When you feel able to please let us know how you are.

Hugs.

Margaret


 

Re: its inflammatory

Posted by Wendy Tea on May 22, 2020 8:47 pm

Chris62‍  Chris, here is a thread you may be interested in. Start at page 1 and feel free to chime in with a post. Let me know when you need help.
I am a survivor. Wendy Tea