Terrified continued
Comments
-
That's tough Sig, having to have the surgery the week of your daughter's birthday, but good that things are being organised. (Coincidentally I had my surgery on the 20th November, last year.)
Yes there is sooo much information to take in, it's good if at all possible to have someone with you to take notes. It would take some pressure off you. If that's not possible, don't be afraid to jot down notes yourself, and ask them to repeat things if you aren't sure what they mean.0 -
Slg: To me the hardest part was the diagnosis and the first appointments (it made it all too real), I was so overwhelmed but ready to do what ever it took take care of and hopefully get rid of the cancer. I would also suggest taking someone with you, I only heard half of what was said but my husband heard everything and asked most of the questions. One step at a time is all you can do. You got this!
0 -
thank you , Rim, Worry and DeeBB!❤️🤗very good words.all 3 of you mentioned taking notes and yes my wonderful husband has been taking notes very diligently at all of my appointments.he very good at talking notes so I’m very grateful and lucky with that ❤️0 -
That's great Sig, glad to hear you have a wonderful hubby to help you!
Mine is good that way too, he always puts notes on his phone while we are at appointments. Which is especially handy for me as I'm hearing impaired so I tend to miss things.
0 -
hi Worry
I’m so glad you have a wonderful husband that helps with note taking (and I’m sure many other things )too!
I hope you are enjoying Sunday and are doing well 🍁
0 -
I put my "SmartRecord" app on my iPhone on and let it record everything being said. I turn it on and put it back in my purse. I turn it off after I leave. It prevents misunderstandings between my husband and myself and also shows me that I only absorbed about half of what was being said. I listen to it several times after. Knowing that I can listen to it later allows me to relax more during the appointment, instead of trying to remember all of the details. I'm the type that if I am taking notes, it's hard to listen to what is being said next. It also saves all the recordings according to the date, which is handy.
0 -
very good idea L.O.R.I , thank you
0 -
hi all,
I rereading through all of everyone’s supportive posts on this thread and am feeling so grateful that so many of you have reached out as I know nobody has an easy time with BC. I’m empathize so much as I’ve read so many other stories on here .
As many of you’ve said this diagnostic waiting phase is the hardest. NO JOKE!!! Tomorrow I meet with the oncologist and I’m still trying to make sense of my meeting with the surgeon that I had last Wednesday. She was pretty certain that a lot of my symptoms are due to peri menopause, anxiety and possibly sleep apnea.they listened to my lungs and examined me .i hadn't mentioned on here that the biopsy DX, ILC 1.1CM e+,p+ HERS2- .im scheduled for lumpectomy on November 19th. What I’ve been learning on my own and in this forum about ILC that is that it’s “sneaky” 😞i will be having an MRI (recommended by the Dr . that did my biopsy NOT the Dr that will do my surgery) on Nov.5 😩 . The dr that will do the surgery said she wouldn’t have recommended the MRI but was in no way going to go against the biopsy Dr. recommendation. .my surgeon( the one doing the lumpectomy) has been doing this for over 30 years and says she used to always recommend MRIs but there were many false positives and puts me at higher risk for mastectomy and says the chances of more cancer being found are very low. I’m trying to have faith that she has good reason to believe that I’m at low risk for more cancer but am uneasy that she and the other doctor seem to have a difference in opinion with the MRI recommendation.anyway I’m thinking my fears out loud again and freaking out about oncologist appointment tomorrow who might have something WAY different to say about everything 🙁Thanks for listening.0 -
Hey Sig. Glad to hear that things are moving forward for you. I think it's good that you're getting an MRI. I was also diagnosed with ILC and had an MRI which found all sorts of atypical cells in the breast that had cancer including a subtype of LCIS (florid type) which put me at higher risk for developing another invasive cancer. Because of the findings, my surgeon recommended mastectomy over lumpectomy. I thought that her reasoning was sound and I did have the mastectomy. Certainly not something that I wanted, but I feel that I made the right decision for a number of reasons. Thinking of you and hoping that your MRI brings no surprises whatsoever, which will probably be the case. Good luck with the oncologist tomorrow!!
0 -
hi Az ,
Thank you for sharing. I’m sorry to hear that found more cells with your MRI which resulted in the mastectomy decision.however I’m glad you feel it was the right decision.i know that is not easy . I also know that The MRI is something I need to have .just a lot of confusing overwhelming information coming at me which I am sure you and everyone here understands
0 -
Sig123 ---- I had the MRI prior to lumpectomy ordered by surgeon. They must determine if there is more cancer in the other breast or somewhere else in the sick breast --- remember mammograms don't often show ILC and also ultra sounds can be iffy. Also, I will have to continue yearly MRI's and mammograms --- such fun )-: I don't know if others with ILC who had a lumpectomy have to continue MRI's --- they found LCIS when they did my lumpectomy so maybe that's the reason for the continued imaging or maybe they always do it - don't know. You DO want that MRI. It's best to be sure what you're dealing with in order to make the best surgery decision.
0 -
thank you for your reply Jessie123,
You explained about the MRI very well and I’m really starting to understand a little bit more about it , especially ILC and how sadly it doesn’t always show up on mammograms and US (although my tumor showed up on both maybe because of it’s location idk?)I do understand that I want the mri . I was just taken a back a bit by the difference in opinions of two of my doctors on it even though the doctor is NOT going against the other- she’s having my get the MRI
0 -
to be a bit more clear the doctor that did my biopsy is a different doctor from the one who will do my surgery.
0 -
Hi Slg ..the doctor that did my biopsy was actually in the Radiology department. I only saw them for that procedure and they are not involved in my treatment.
My surgeon is part of my treatment team. Just me personally but I would go with the surgeon as the radiologist is more of a generalist, at least here in my neck of the woods.
Sending hope for more answers and peace through your upcoming appointments.
0 -
hi Rlm
I’ve been thinking of you as i know your hurry up and wait game is no fun right now either .
I had the choice of going with the radiology team (they did my biopsy)for treatment or the md Anderson cancer team at a hospital that’s closer to my house for my treatment- I chose the hospital closer to home .
Sending lots of loving hugs and encouragement your way ❤️
0 -
Slg,
Are you in Texas? We were in Texas for almost 14 years and still have family there. Great reports come out of MD Anderson from family and friends that have been involved with them. I think you are in good hands. ❤❤
0 -
Rlm , no not in Texas. I’m in New Mexico but MD Anderson is part of the cancer center at the Presbyterian hospital here .i do believe I’m in good hands , thank you 😊💕 is MD Anderson part of your treatment?
0 -
No, unfortunately we are no longer in Texas but in South Carolina now. I am considering sending pathology to MD Anderson for a second opinion. I am trying to wrap my head around staging if I do chemo first. It's a bit confusing that I wont know the lymph node status before starting treatment.
0 -
Rlm ,
That does sound a bit confusing .only if you want to share let us know if you do decide on the second opinion from Anderson. (((Hugs)))))
0 -
Hi Slg,
I got thru the biopsy this AM and the 2nd local opinion this afternoon. Now just waiting on the biopsy report.
Lots to digest again but it all seems doable.
How are you doing??
0 -
Hi ,Rlm
I’m glad you got a second opinion and are done with the biopsy. Hope the results don’t take too long.
I’m hanging in there the best I can , trying not to worry to much(and breath) about the MRI I have coming up on the 5th - it’s very difficult as I know you know all too well .thanks for asking
0 -
Hey Slg,
Biposy was negative, benign some sort of fibroadema (sp) - I will get final pathology report by Friday but nothing that will interfere or change my treatment, stage or prognosis!!
0 -
great news , Rlm!!! 😃👏🏼❤️Thanks for the update ! I know this is still not easy but you’re doing great
0 -
Hey Slg...thinking about you today. Did I remember correctly that you are doing your MRI today? Hope it all goes well!!
0 -
awww thank you for remembering Rlm ! Yes I just got done about an hour ago . It wasn’t bad but now I’ve got that lovely waiting again ! We know it too well .
0 -
I’m having a second biopsy on Friday. A spot that the doc said doesn’t look like anything(he said that a couple times-that he thinks it’s nothing to worry about ), was found in the middle of the same breast(left) as the cancer.since there is already cancer in that breast they want to make sure. Sigh ! Not bad news I suppose but still in limbo here and not exactly thrilled with another biopsy.
0 -
Oh, Slg...I know that's not what you wanted to hear but I am hopeful it's nothing. I hated going back for the 2nd biopsy but it was not as scary as the first since I knew what to expect.
We met with our new oncologist today and he gave us another option that starts with surgery. So, he put a rush into a referral to a surgeon and we are going there in Thursday.
Still waiting but at peace. Wishing you peace too!!
0 -
hi Rlm
Yeah I’m not thrilled about going back for a second biopsy:( but not quite as scared as the first time. This waiting is still the absolute worst and I’m still pretty shell shocked and finding it hard to function and accept all this .
I’m so glad you aregetting the second opinion and are at peace with your next step and hopefully beyond that . I hope your mom and family are doing okay too 😊Lots of hugs ❤️
0 -
Hi Slg,
I know the waiting is crazy hard. Some days I am ok and some days I lock myself in the bathroom, turn on the shower and just cry.
I met with the surgeon today and really liked him but my surgery is not scheduled to 12/18. There is just alot going on in my breasts that everyone feels a double mastectomy is a reasonable approach but we need to get a pre auth from the insurance company. Plus the surgical scheduler said this was their busiest time because everyone has met their deductibles and are scheduling procedures before the end of the year!!
So more waiting for me!!
0 -
hi Rlm ,
So sorry there’s more waiting for you also
.It’s incredible to me all I’m learning in DX like this . Just completely blown away.for me it’s like moment to moment . One minute I’ll be okay and then the next NOT AT ALL . I try hard to stay positive for myself, my daughters and my husband.i guess I’m still in a phase of trying to accept this even after 3 weeks out from DX .my mom emailed me today (still haven’t told her) saying that she hopes I’m well . I have no idea how to respond. I guess I would have thought I had more answers by now and could start sharing the news with more of my loved ones but that hasn’t been the case . Just more questions than answers .
0
