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NEW TNBC with Type 1 Diabetes

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GeriC View Drop Down
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    Posted: Sep 12 2019 at 10:25am
Hello! I am new here - never even been in a forum/blog or group chat, but here I am. Here's my short story.

I found the marble in my right armpit on July 20th; saw my GYN on Mon the 22nd, had mammo and ultrasound on Fri the 26th; had biopsy on Aug 5th, got cancer diagnosis on Aug 9th  (triple negative invasive ductal carcinoma, stage 1). My first meeting with my surgeon was 8/12, my scheduled MRI and ultrasound was 8/14 (MRI didn’t  happen due to metal in my head) my first appt with all my cancer doctors was 8/16. At that meeting, I was told that my lumpectomy would be performed the beginning of Sept. (this has not happened.)  MRI couldn’t get rescheduled until 8/29, at which time I had MRI and ultrasound. Now I have another MRI with biopsy scheduled for 9/13, since they found more spots on 1st MRI.  This will determine if pre-discussed plan of treatment changes or stays the same (AC-T plus radiation).  I know I still have to get cleared by Cardiologist for cancer treatment before ANYTHING happens. I am so EXTREMLY frustrated that this is taking so long – it’s now more than a month since diagnosis, and it is really getting to me.

On top of CANCER, I have had diabetes type 1 since I was 17 (as well as several other autoimmune conditions) I am 44 for about 1 more month. I am actually less scared of cancer than I am my diabetes and how all the drugs are going to affect it. The word steroid shoots my blood sugar to uncontrollable numbers – and I REFUSE TO END UP IN THE HOSPITAL BECAUSE OF MY DIABETES while being treated for CANCER!!!!

Of course Cancer scares me - the chemo and steroids and effects on blood sugar levels are terrifying to me.  My cancer center does a mentor-ship program that matches you to a survivor with similar stats as you - but unfortunately they have no one to match to me - no TNBC with Type 1 diabetes. So I am asking here - anyone offer any insight to how these drugs may affect me? My Endo has a plan, but its an as you go step by step trial and error - which terrifies me.

I am reaching out - thanks for being here.

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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Sep 12 2019 at 2:27pm
Welcome Geri, I'm so sorry for your diagnosis but glad you found us. This is one of the most stressful and frustrating times in our treatment! Most TNBC cancer is grade 3 - aggressive and fast growing, so your instinct to hurry is an accurate one. But at the same time a LOT needs to happen before you start any treatment. The scans are hugely important to know where you are cancer-wise, to know what's best, and these scans almost always turn up more "stuff" that requires more testing to rule out more cancer, but it's usually nothing. I had to have another biopsy the first time, it turned out benign. There's usually the MRI, CAT scan, bone scan,  heart tests and sometimes a PET scan as well as genetic tests to rule out gene mutations (tho rare, if positive that can drastically change a treatment plan). PHEW! It's a LOT. But you are not wrong, all of this needs to happen FAST. It's best to be in treatment by 6-8 weeks after diagnosis. These days most of us do chemo first - neoadjuvant - to shrink or totally eradicate tumors before surgery, and to know if the chemo we are doing destroys our particular cancer. If you have more than one spot positive for TNBC that's probably what will be talked about, if it hasn't already. Whether surgery or chemo is first, you need as quick a chemo start date as possible, as that had proven important with our disease. 
We've had many women here going thru treatment with diabetes, more type 2, but type 1 as well. It's an additional challenge for sure, but a good medical oncologist will have experience dealing with the issues, as should your endocrinologist as well. Could you end up hospitalized? It's not uncommon for us to end up in the hospital during treatment without diabetes (I did), so of course it may happen to you as well. You've managed your diabetes almost your whole life, of course you are terrified to be told you're now going to have to do things you've always been told never to do!! But trust that they will get you thru it. It must be frustrating to not have them be able to tell you exactly what's going to happen and how they'll deal with it. That is because everyone is so different. Everyone's reaction to the chemo alone is so different, much less how their diabetes will react to it. Hopefully othr ladies will respond that went thru treatment with type 1 and can tell you the challenges they dealt with. Right now your #1 priority is to get the treatment started as quick as you can, so keep after your team. Push for a surgery date or a first chemo date hard as soon as this biopsy is behind you. And trust that you and your doctors will handle any diabetes related issues quickly as they arise while you get thru this. 
I hope you will keep us updated on your progress! You can bring up _anything_ here, we're here to listen and help if we can. 
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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GeriC View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote GeriC Quote  Post ReplyReply Direct Link To This Post Posted: Sep 13 2019 at 8:20am
Thank you Kelly - I do appreciate your feedback.  Congrats on NED!!!! I see you went through some pretty terrible stuff yourself - and you sound very positive!  Yesterday was my first breakdown since diagnosis and I know there are more to come. This standing still and waiting is not my thing - but I will persevere! Thank you again - I am sure I will post here and there!! This site is very helpful!
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