Overwhelmed... (newly diagnosed)

RozHopkins said:

Hi.  Lots of ladies will be

Hi.  Lots of ladies will be in touch on here soon with good, solid advice and support.  I am not an into details kind of person just did as I was told kind of thing when I was diagnosed.  But would say your children's support is brilliant and will help them and you through your treatment.  You would be surprised at some family and friends bad handling of cancer news.  And your comment of taking things one step at a time is again the best way to deal with everything going on now and over the next months.

Sorry you haven't good insurance cover but hope you can afford the treatment you choose.

Reconstruction is your choice, everything is your choice come to that and we all realize that fact here first.  Go with your gut feeling.  Ask every question you can think of and make sure you like your oncologist and plastic surgeon.  One side was reconstructed straight after surgery the other was inflated over several weeks (long story).  But reconstruction can be done both sides after surgery it depends on what the surgeon recommends, plus the plastic surgeon and if they work well together.  Mine were a very good team.

I did have a double mastectomy, basic four chemos, no radiation.  Lots of ladies have much more than I had and in my opinion deserve medals.  Honestly the surgery is you go in and come out with something taken away, but afterwards can be a challenge.  The worst part for me was the drains, a nuisance and one was very, very sore.  But two weeks average they are gone.  A port is helpful but not absolutely necessary for chemo if required, up to you and what you want to spend available funds on.  Note if you are getting chemo the port can be put in while you have mastectomies hence one procedure not two.  Reconstruction....... some don't bother some do.  I personally did, it rarely is perfect and you may need a tweek but I look absolutely fine and no one would know 'they weren't mine'.  Plastic surgeon was way off matching the second breast size and did it again and did a darn good job.  I didn't get nipple tattoos and was reduced in breast size.  Originally 38 DDD so now can wear lovely tops with a smaller, pert bust, much more comfortable.  I never wear bras as get too hot but have the ones that are very soft and fit where they touch and pull over your head for things like doctor appointments and going to the gym.

After surgery you need to be careful, no ironing or lifting anything for a while.  There will be pain, please take the painkillers, won't be for long THEY WORK.  No stretching, rest as much as you can and let people help.  Bring things like frequently used kitchen ware down to an easy height.  May be easier to sleep in a chair at first, recliners are good or in bed on your back (a problem for many).  Wear PJs that button up the front (very important at first) they must be comfortable, then other clothing that buttons up front for a while.  The drains can be placed in PJ pockets or pinned on so they don't pull as you move.

You will feel much better after a few weeks I promise you, and low waterline baths feels like heaven when allowed.  I wrapped the drains around my neck during a bath.  Get some one to wash your hair which also makes you feel better as you can't get the chest wet for a while.

I think this is enough info as you say one step at a time, later hormone treatment, chemo if required etc. more advice will come your way.  Try not to worry too much........ I know easier said.

We are all here to help. XX 

Thank you Roz! I actually have chronic back pain. I have degenerative disc disease and also a few bulging discs and sciatica. So I have been on a pain regimen for quite some time. That adds another concern as to how hard it may be to get my pain under control after surgery, since my body is already tolerant of the meds. But this is something I am talking with my doctors about. They have reassured me it should be fine, but I still worry a little, lol. As I stated above, I'm a natural worrier.
I think the whole "losing a part of myself" thing won't really hit me fully until after surgery, and I'm not really looking forward to that. I have tried to come to terms with it now, but it's just unimaginable at this point. So I know it's going to be tough when the reality hits me.
As far as the financial things, being able to afford certain treatments...we are a single income family and live paycheck to paycheck. I do some work from home, but it's more of an added bonus from time to time. Now my fiance has had to take time off work to take me to appts and stuff, and I know there will be much more of that to come, so yeah, if my insurance doesn't cover something I'm kinda screwed. I have to just do whatever they will cover when it comes to treatments. Although, I do have some really wonderful authors who have put together an online book auction to try and help raise money for me and my family. They are so amazing and sweet. I have been doing things on social media for my authors for a few years now (promoting releases, sales, PA work, cover/graphic design & proofing/editing), it doesn't pay much, just a little here and there, I do a lot of it for free (just to help) cuz it's something I really enjoy. I'm hoping I can continue some of this through everything I am going through.
From what I've read about others, there are some really strong courageous women on here....I hope I can be one too! #FightLikeAGirl Right?!

Thank you! Yes, that is how I'm feeling. Like it just never leaves my mind. I did successfully make it thru most of Christmas Eve and most of Christmas day without dwelling or thinking about it much. It was nice. I kinda felt "normal" again, if even for a day or 2, lol. Even when the pains would come it was still a distant thought. So that was a very nice break. But now it's back to reality....
Just had my genetics test done today. Calling my surgeon to (hopefully) schedule surgery. I have a cold, so they may make me wait.
And yes, my emotions are all out of whack! One minute I'm fine, then I'm crying.... I'll be laughing, then cry again just out of the blue...I feel like a nutcase, lol.

Thank you all so much for sharing with me, it really helps just knowing so many have gone through or are going through the same thing (thought, feelings & worries too). I do have one question that has been on my mind a lot recently....About how long after diagnosis did you have surgery? I know this varies for everyone, and depends on how aggressive your cancers are, but I am really starting to worry as I was diagnosed on Dec 2, and now it is almost Jan 2nd...one whole month later. And I still have no surgery date set! Although, they are working on getting a date for me and I may find that out tomorrow.
I was told my cancers are growing at a rate of 17%. They said it isn't a super fast growing kind, but it isn't the slow kind either. Being a clinical stage 2, with grades 1 & 2 tumors (at least 3 areas that we know of. One is 11mm, one is 8mm and the 3rd is 4mm. In the beginning I was told I would have surgery within the first couple weeks, that it would all go super fast. But with the holiday and everything it's taking a bit longer. My Oncologist & surgeon both were out of town for a couple weeks. But now they are back and we're moving forward. I just feel like it's gotten bigger. My left breast has definitely grown and the pain has gotten worse. It used to only hurt around the nipple, now that pain has moved towards my armpit. So yeah, it scares me.
Did any of you have to wait this long for surgery?

Double Whammy said:

I waited about 3 weeks for lumpectomy

and then I had to wait 6 more weeks for my hysterectomy before I could start any adjuvunct treatments!  (I had both breast and endometrial cancers).  Then I waited 3 weeks after hysterectomy before starting chemo for the breast cancer.  I could just feel it growing here and there and everywhere and I was sure that my endometrial cancer had grown just about everywhere - it hadn't, was Stage 1.  In hindsight, I can say all was well and that was in 2010.  No recurrence.  Nothing even scarey (except my thoughts).  My breast cancer was Grade 2 but Stage 1 (node negative), only one 9 mm tumor but lots of DCIS.  Margins around tumor were not clear but because I was also getting/having a mini-breast reduction on that side (it was much larger than the other one), the margins for the entire chunk were clear.   I had chemo because of high oncotype score.  The waiting was the absolute worst!  I feel very thankful and lucky.  I hope all goes well for you and you get that surgery date tomorrow!  While holidays seem to drag things out, if your cancer needed surgery sooner, it would have happened.  So, I'm thinking this is good news. . .

Keep bringing the IUD to their attention.  I really don't know about those things, but I do know that estrogen is not a good thing for ER+ cancers and PR, too?  It will give you peace of mind to have that removed and that part of you paid some attention to as well.  I have loved being a woman, but the older I get, the more I recognize that stuff happens because of being a woman.  Both my breast and uterine cancers were estrogen related.  But it was sure good to have estrogen back in the day . .

 Hugs, Suzanne

Thanks! That does help me feel a little better knowing I am not out of the "norm," per se. And yes, the IUD does worry me, but since I have Endometriosis and Adenomyosis, they want to keep it in for now. The doctor's reassure me the IUD is supposed to only release the hormones in that lower region of the body (the pelvic area), they said if I were taking the pill or shot that they would have me stop immediately. But it does still worry me. I am debating having a hysterectomy in the future, just to get rid of all the trouble the uterus and ovaries have caused me. I have 3 children, and while I do wish I could have more (I just LOVE babies!), financially and physically I am unable. So why not get that all out of there so I have one less thing to worry about? Is it rough? After the hysterectomy? Going into menopause and all?
Oh, and I didn't realize that the doctor offices reserve New Year's on Monday when New Year's day falls on a Sunday....the clinics were closed today! But hopefully I'll find out the date tomorrow!