August 2013 Surgeries

Jeannine - I'm so sorry you had to endure a surgery for stupid drains!  I guess I should take a lessen from that and feel blessed that it seems apparent mine are not obstructed.....  You had my biggest fear happen to you today!  I can't imagine hearing them tell you "time to go into surgery" when you just had surgery last week.  And you sound so upbeat!!!  Did your PS explain why there was no SIGNS of infection?  Do take it easy this week, please.  Not that you did anything to bring this about; these things happen for no particular reason but it does make sense that your immune system has been compromised and infection is a nasty little bugger that looks for any weakness to invade - and unfortunately it did in your case.  But give your body a rest this next week, you certainly deserve it!

Kbeee - so glad you found a wig!  Sounds cute (you should post some pictures so we can see your "unruly" hair now and then post some with your new style when you start wearing it - perhaps you can find a fire helmet and put that on for a photo too and let us get a good laugh!).  I don't think you need to worry about your wig blowing off in the wind though but what do I know?  But you have painted a couple of funny pictures with your descriptions!!!  Sorry to hear about your nephew; my husband has been in the military now for almost 29 years and has done his fair share of tours in these terrible wars.  So I understand and respect your sensitivity with hats being removed while the National Anthem is played.  And I'm happy for you to have gotten your drains out!

Take Care!

Thank you Aviva and Lisa for your concern. I'm still coming to terms with what my pathology report said and what it means. All was good news with the IDC. It was 1.5 cm and graded at Stage IA. If I had that alone, I'd only need the hormone pill. But, the ILC turned out to be larger than originally thought, at 2.2 cm, and that is Stage IIA. My oncologist explained the old grading system,which would put me at a 20% chance of recurrence somewhere else in my body. She offered to do an Oncotype test which is more advanced and which would tell me more definitively and accurately my recurrence risk and would help us decide whether or not to do preventative chemo. So I agreed to the test, and will see her 2 weeks from tomorrow to find out the results of that. So I'm disappointed because I had hoped that what they found would be the same as what was thought prior to surgery and I definitely would not need chemo. I think what shocked me the most is that my understanding was that by removing my breasts and then later on my ovaries and uterus, that my chances of recurrence were reduced to 1 or 2% or just about normal. Now I understand that that was the risk of another breast cancer and ovarian cancer but not the risk of a recurrence from a microscopic amount of cancer left behind. Jumping from the 1 to 2% in my mind up to approximately 20% (which may be higher or lower once the Oncotype comes back) is the part that is shocking and upsetting to me. She told me the type of chemo I'd have if I have it and its something that's just one day every 3 weeks for 6 cycles so that doesn't seem too bad. It's just that 20% number that I didn't see coming that has unnerved me.

Sorry for your difficult day, JBDayton.

Lili1964, I think we're in similar situations. You're waiting for your Oncotype, too?

I appreciate everyone's support and info-sharing more than you know.



P.s. I'm back up to 2 percocets every 4 hours because this fill HURTS!



Also, not to neglect the positive, I have clean margins and no lymph node involvement. I can't wait to hear your responses!

Jacquie - guess because I knew before my surgery that I was Triple Negative, my only option following surgery, if any therapy was needed, was chemo.  So I’ve been prepared since my first pathology on 7/23; my right SLN showed positive for cancer, so BS told me he met w/Oncologist before seeing me post surgery and the recommendation is 16 weeks chemo.  Right now, that’s all I know.  BS said I have to wait to see Oncology on 9/16 and they will determine if they will do the Oncontype testing or not.  I’ve read at other posts that because they have Triple Negative Breast Cancer and are under the age of 50 (some say 60) that BRCA testing was done (I asked BS about that and he said “because there is no family history of breast cancer in your family, your insurance likely would not cover the cost of the test – it is very costly”).  Other ladies posts say their insurances didn’t balk at covering the test; but I found sometimes my BS downplayed a lot of stuff so I’ll be asking Oncology about it (my husband got the same feeling from BS – he is very good and very well respected in our area but even though I’m not a “worst-case scenario cancer patient” – it devastated our lives hearing the diagnosis and I guess he perhaps was trying to be reassuring but didn’t carry it off very well) – I DIGRESS….  Anyway, I just have to be patient and wait to see Oncology on 9/16 to get more definitive answers.  I would like the BRCA testing (and we have very good insurance – thank God!) and I want a PET Scan – both would make me more comfortable in having all info possible before putting in place a plan to kill whatever cancer remains.  I feel pretty OK about the recurrence rate percentages w/info I now have but again, Oncology will help me thru this process better.  

So that was all very lengthy and I apologize (as you’ve all realized by now, I do go on and on), but Jacquie….chemo is not the end of the world.  It’s also very effective.  They have come so far in technology, many brave ladies before us paved the way to today’s day and age where they have perfected the therapy and lessened the side effects.  Please take heart in that…..if you need it, we are all here for you and will support and encourage you along the way.  There have been several ladies who just this last couple of days offered their advise and assistance to any of us heading into chemo – so you have a great support group here if chemo is in your future. 

How much did they fill you?  I have my first fill tomorrow…..  

Kbeee – I hope you did not take offense about my statement regarding the fire helmet.  And bless you for your profession!  It was your description that painted a funny picture in my head so please know it was said in jest.  But if you have a chance, take that selfie so we can get a look at your before and afters w/natural hair and new wig and then w/fire helmet (once you’re bald).  And, bless the wonderful men you work with at the fire/paramedic for offering to do the shave.  I love the camaraderie w/first responders – they’ll all have a good time shaving your head, I think, and it was thoughtful of them to put off the summer picnic so you could attend! 

JennH8 – so happy for you to get 1 drain out!  And you get to shower!!!!!!  I think a lot of us were nervous so look at the posts from this past weekend for some hints.  I also started a thread in Surgery-Before-During and After called “Shower Tips” where I’ve listed the many hints I’ve read, those I came up with, and those that others have offered since I stared the thread.  They’re all in one place and split on “what to do with your drains” and “shower/hair washing tips”.  You might be less nervous once you read what different things you can do to make it an enjoyable and refreshing experience.  I have never, even one month post surgery, taken a good look straight on – I just can’t do it.  Not because I no longer have breasts….it’s the idea of seeing sutures in myself OR any person that makes me want to vomit!  And I have a lot of sutures and none are dissolving; another thing the PS will be doing tomorrow.  Snip, snip – I literally demanded they snip these off!  I’m tired of them catching of clothing and creating a burning feeling from the friction!  I’ve glanced at all incisions but my husband has been on full nursing duty and been taking care of everything having to do with them since I came home.  I’m not afraid of what I look like…I got a T-Shirt to wear once I have my reconstruction completed that says “Yeah, They’re Fake – my real ones tried to kill me”.  So you can see I’m not upset being w/o breasts or anyone knowing it….surgery and the aftermath of it just grosses me out to no end!  I hope when you see yourself you remember that your breasts (or lack of) do not define the person within. 

I wondered, ladies, I’ve not read in any of our postings about children.  Are any of you having to deal with this new life we find ourselves in while having children at home?  I’ve read on other threads just how hard that’s been for some; I myself could not imagine having a child at home during this time in our lives and having to keep stress and fear and anxiety at bay to keep from scaring a child/children.  Myself….our daughter is 26 and living over 2000 miles away.  She wanted to come home during all this but I asked her to stay where she was (it is so hard finding employment in the Seattle area and she just started a job less than a year ago and because it is a small, newly formed business, getting time off was going to be an issue).  I knew her love and thoughts were constantly with me and there was little she could do for me.  The housecleaning can be done little by little as I feel up to it, my husbands done his fair share, and quite frankly when I don’t feel well I can get to be a little witchy and prefer to not be around others.  I asked that she wait til Christmas and come home with her boyfriend (soon to be a fiancé, I believe!) then.  He is from Wisconsin as well – and I think I’ll be smack dab in the middle of chemo and would love to have her with us at that time.  We were supposed to fly out to visit them over the Labor Day weekend but because I’m still recovering (and dragging around these disgusting drains!!!) and because I was told no Air Travel for 2-3 months post surgery – we had to cancel our trip.  We talk quite often, Skype weekly, but there’s nothing like having your child home for the holidays!! 

Please, if you all don’t find it too personal, post if you have children or a child and if you’re having to deal with cancer while you still have them at home. 

Wishing everyone a great day!  Thoughts are with you all.  I feel so fortunate to have found this forum and to be able to share with others going thru what I’m going thru! 

Lisa

Hi, I just found this site today. Your post about children caught me off guard. I was diagnosed in june it was caught on a routine mamagram. I had a Dmx with immediate deip recon in Aug. I was in the hospital for 5 days and am now at home recouperating.



I have a 9 yr old boy. I struggled with what to tell him especially since my mom passed away from a rare cancer a year ago. I decided to be honest with him and was really nervous about it, but he surprised me and has been wonderful. I planned for the week i was in the hospital for him to have playdates and sleepovers with friends so he wouldnt be just sitting at home. He didnt come to the hospital because i never knew when would be feeling good. When I got home, he helped me settle in. He went to the dentist last week and afterwards the dentist came out and said what a wonerful kid I had, she said he told her and that he was helping me and he had such a positive outlook that she just had to come out and talk to me about his behavior. I was very proud of him. I am on my way (knock on wood) to putting this behind me.

MRTW- aweee, your lil guy sounds so wonderful!! Seems kids take the news better than we expect. Though mine are older now, I lost my mother 4 yrs ago to cancer and my father 13 days prior.  They seem to do ok, and yours sound like a real sweety.

Glad it sounds like you are recovering well

Hi honeybair I will be starting chemo soon I would love to hear your suggestions on what helped you get through it.

babs6287 – I’m sorry to hear how your son is.  It is strange how families act and behave.  I had gotten to be really down beaten with mankind in general because of all the friction w/brothers and sisters; the same happens in my husbands family; and in general when you look at society everyone seems to just be less caring in general.  That was before I was diagnosed with cancer.  Since…..I’ve been astounded by God opening my eyes to all the wonderful and caring people that are still out there and don’t mind admitting that I’ve balled my eyes out many times being touched personally by that (heck, I’m crying now just thinking of all the wonderful people I’ve run into and the support and caring that has poured into my life).  Your son and his wife have issues, obviously, and you are correct when you say its weird how 2 children raised in the same house can end up so different!  I’ve come to my own conclusion that when we reach a certain age, we choose our path in life.  That path determines how we behave and treat others.  And you as a mother can do little about your son since HE chose his path, chose his spouse, and those decisions make him the man he is today.  You love him just the same; but it’s good you can put it in perspective and not let it consume you (my mother-in-law had issues for years that literally made her so sick she’d end up in bed.  One day she finally realized that the relationship she had w/ her eldest son was just not something she had any control over but it took over her life for years and years – until she finally just brushed it off and moved on)!  But your daughter…..warms my heart to hear what a wonderful and caring and loving young lady she is and obviously a very close friend to you.  Thank you so much for sharing your story with us!  Your son may come around it time so don’t lose hope. 

mrtw43 – welcome!  Glad you found us and hope you find and join in our discussions from now on.  We seem to have developed as quite a group here and I, for one, can’t say how helpful it has been to me.  I hope you find the same.  (by the way…it took me almost 3 weeks post surgery to find these discussion boards so I’m a little like you in being a “late-starter”.  I wish I had found it sooner but we’re here now and can “compare notes” and support each other.) 

Your son sounds wonderful!  It is tough to have to tell children something bad and it never fails to amaze me how well they deal with it.  I believe it has to do with how they are told and how they are reassured…..which speaks to good parenting.  So kudos to you for raising a smart young man!  

ndgrrl – if you don’t mind my asking, how old are your children?  Did you have the Onco DX test yet or are you waiting to see Oncology to order the test?  I hate the waiting too but I’m of the belief there are other women with worse cancers than myself and they must be seen and taken care of first (and I’ve no problem stepping aside and taking an appt further out so those with more urgent need get their care first – I’d hope others would do the same for me if the roles were reversed).  Hate the wait but understand the reason so I just find things to keep busy and figure I’ll get all my info soon enough…… 

JennH8 – glad you got your shower and like your new baby boobs!  I looked at a lot of pre and post reconstructive surgeries and found them bothersome……but since it’s what I have, it’s what I have – the scars just kind of freak me out but they do lessen in appearance in time so I should be fine once EVERYTHING is done and over with.  Did you have nipple sparing MX?  I had no choice; mine are gone and after reading what’s involved in reconstructing that particular little piece of me – I’m not doing it!  Just my preference and then I don’t have to ever worry about “show thru” from now on so it has its benefits.  

Thanks for sharing your children with us.  I can understand how hard it was for your youngest and that how she took it was worse than the diagnosis (ok – I can’t understand because I didn’t experience that myself but I can imagine).  How did your step-grandchildren take the news?  My daughter and husband both have been my rocks – my daughter is so positive and supportive I cannot believe how blessed we are for her!  She took the news worse when the mammo’s and ultrasound came back and I called her that evening to tell her that something was “not right” and all the testing that I was going to be having over the next week – she took it very hard.  But once the diagnosis came in, her positivity and love just kicked in full gear and she’s been by my side the whole time offering encouragement beyond words.  She might not have been here physically, more because I asked her to stay put and come home at Christmas instead, but miles don’t matter to me.  I was in her shoes at her age as well, being far from home, so I understand the desire to fly home when a crisis arises but I knew she could be just as supportive if she stayed put as if she were here at home with us.  Thank God for good children, right!

Lisa

I have a 21 year old college senior. She was away when I got the dx so have been relating everything to her by phone. She seems to be ok. I try to encourage her and my hubby to talk to each other to say stuff they might not say to me, to help with the stress.  She hasnt said very much at all, but kids that age are caught up in themselves, so I guess its ok.  Slightly more concern wouldnt kill her tho!

Tried to make appt w/PS for tomorrow for drains- and he doesnt see patients Friday! doh!  So Monday it is, have to go first thing, then rush to BS at 1015, then Im trying to hook up with the onco social worker after to see what support is offered, for talking. So Monday will be crazy!

And I asked= ok since itll be 2 1/2 weeks- cant I saran wrap up and take a shower== no! Too afraid of drain site infection. Good thing I bought some Nair and Tom deod at store today.

We should all get an award for all of the waiting we do...waiting for tests, waiting for results, waiting for healing, waiting for appts, waiting to start therapy, waiting for calls to be returned, waiting for the insurance company to respond, waiting for drainage to slow down.

I too heard from my Patient Navigator that insurance companies look at different criteria/family history to decide if they will pay for any BRCA1 and BRCA2 testing. During my 1st appt with the MO we only briefly discussed genetics and testing so that is an area to revisit.

My MO did, however, bring up further testing for metastasis since the stage of my cancer jumped from a clincial stage II to a stage III after the pathology reports since there were more lymph nodes involved than previously thought. So next week I am having a CT scan of my chest, abdomen and pelvis.  As much as I don't even want to think about where else the cancer might be, I'm really happy he suggested it so I don't have to wonder about every twinge or pain in my body being cancer.  I think because my original BC tumor could not be felt, even by the BS when she knew where it was, it makes me more anxious wondering about where else it might be.  I know it won't find the rogue cell wandering around, but that's what the chemo will take care of! I'm glad I could get the testing done while I'm waiting for my 9/19 appt to get cleared by the BS to start my chemo.  

Thinking of you while you wait........

Pam

I had a lumpectomy a week ago, Aug 29th. The lump was solid to the touch, 6 o clock position chest wall. There was another growth or extension which the surgeon found out was a lymph node. (removed) The surgery was extensive he said because he really had to dig.

I am new to this, just learning the terms.

Before surgery I was taken down to Nuclear Medicine, scary, behind the door with the big RADIOACTIVE warning. A radiologist did 4 injections, owie, with a needle below my nipple. Have most of you had that done pre op?

I did have lymph nodes removed and have a drain. I went to the BS yesterday, he was pleased with the incisons, healing well. But did keep the drain in. The pathology results were not in yet. He hopes by tomorrow and I have a tentative appointment with him in the afternoon.

I had a navigator (liasion?) call me after my diagnosis but she was going on vacation and I have not heard from her since. I guess oncologist appointment won't be made til these last results are in. Though the surgeon put in a port, telling me I will need herceptin, chemo and radiation. So that news won't be a surprise.

It sure helps to read all your posts.

ok didnt think of that= no nair then til after the drain is out.

Vintage- welcome aboard, we are friendly folk here. I also went to nuc med before my bmx- they did the same thing, injecting the dye with 2 shots on either side, - had to redo the right side because it didnt go into the node well enough, so 6 shots total.  I was numb on outside of both breasts since I had just had lumpectomy with reconstruction  so only the inside area shots hurt a little bit.  After the shots tho it didnt hurt and I didnt worry about the radiation- after all- those guys work in that dept all day long!

I would check with your BS about your oncologist- and maybe call now to set up an appointment so that once path report is back you will be ready to go and not have to wait potentially a week or two or three to see him/her.  They must know already alot if they put that port in tho...???

Aviva5675 – girls can be funny at that age when off at college.  I found w/our daughter that she took her new independence as a temp step away from Mom and Dad.  By time she graduated, though, there seemed to be something that happened.  I always wonder if it was the realization that “college life” is done and now it’s time to face the real world again.  Kind of put things in perspective with her and she became such a close friend to my husband and myself.  She was a different person actually than during the years of being away at college so although you think your 21 year old daughter might not be showing the concern you’d like (and expect) her to, it might be that she’s really torn up inside.  I bet you’ll find all that out once she graduates and re-connects with you. 

Sorry to hear you have to suffer the weekend w/your drains.  I actually have it a little easier, whenever my time comes!, I was told to just call and any of the nursing staff can remove the tubes (my PS’s nurse removed my 1^st two) and I can call in the morning and they will make time to fit me in to get them out.  I hope they meant it because when that day comes, I don’t want any more waiting! 

What is Tom deodorant?  

Babs6287 – funny….I was going to ask you if you thought hour daughter-in-law was behind how your son acts….and sure enough, sounds like the case from your post.  Like I said, every family I personally know (with the exception of my employer) has some issues similar to what I said about some of my siblings/my husband family and his issues with some of his siblings/and some of you with members of your families.  It seems to be very common, which is really too bad.  I mourn the loss of good relations with those member of my family that have gone “wayward” over our adult lives but we all still love each other, even if we choose to agree to disagree.  And not necessarily spend a lot of time in each others company. 

And Happy New Year to you….or should I say Happy Rosh Hashanah?  Is that what you meant? 

Jeannine – if you’re still out there reading the posts, I’d love to hear how you’re doing.  You sounded so upbeat even after what you went thru…..are you still feeling that way?  I’m sure everyone else is in agreement here – we’d love to hear how you’re recouping from your most recent surgery and how it might be affecting you emotionally.  I’ve been watching for an update but nothing so far.  Even if you can just post a “quickie”, we’d love to hear how you’re doing.  I’m continuing to keep you in my prayers and I’m hoping, hoping, hoping you are doing well! 

Vintagegal1111 – I welcome you as well.  Don’t worry too much about the language.  I still find I have to stop and think (and think and think) what some of the abbrev mean. I will not give up my privacy – so I’ve texted VERY minimally in the past and I refuse to join in the social media craze…..so I’m a downright idiot w/abbreviations but you’ll figure it out (I like to communicatate via the good old fashioned telephone).  If you don’t know, just ask and anyone of us will jump in and tell you what a particular abbrev means. 

I too had SNL biopsy but because my BMX was first morning, I had to have the injections the day prior.  My doctor, knowing how anxious I was to have that done, prescribed me an anti-anxiety med and I don’t recall much of what went on.  I did a double insurance policy that day and stopped by my doctor’s office and they slathered lidocaine over both breasts so that they were somewhat numb by time I got to Nuclear Med.  In fact, I remember NOTHING of being put in the machine for the mapping…..Gosh I love that medication!  Had it as well for the stereotactic biopsy procedure and good thing, too.  My left breast was not numb even after the lidocaine injection and when my BS inserted the core needle, well the pain was so intense and unexpected I flinched so bad I pulled my breast out of the mammography compression and pulled out the core needle as well.  Only the medication I took before the procedure allowed me not to scream “That’s it – I’m done!” and made me “agreeable” to continue with the procedure.  And good thing I was in that state of mind….the testing is what confirmed I had cancer.  But I had read about how it could be painful, and not recommended for small breasted women (of which I was one) so I had a lot of anxiety.  I had to tell my BS when we met to go over biopsy when he kept saying “like I said during the procedure” and “what I showed you after the procedure” was this.  I said “I don’t remember you talking to me about anything. It’s like the anti-anxiety medication gave me amnesia or something so please forgive me but I need you to tell me everything again because I’ve no memory of talking with you at all.  He kind of chuckled but understood.  

My BS wouldn’t let an Oncology appt be made until he met w/me personally to go over finally pathology.  So it’s not uncommon for you to have to wait. Although, there are some very lucky ladies here who seem to have gotten Oncology appts pretty quickly so I guess every facility has diff protocols.  My Oncology appt ended up being 4 weeks after meeting w/BS so I’ll be 1-1/2 months post surgery by time I see her.  Waiting stinks but what can we do when they have their protocols? 

I hope your pathology comes back with good news – can you tell us how you know so much about treatment already?  And since they already put in a port, your initial pathology must have given you some detailed info (I don’t see any diagnosis info on you so if you feel I’m prying, just don’t answer – I don’t mean to pry but am interested in learning). 

To everyone – thank you so much for sharing about your children!  I’m glad I asked.  It’s nice to know a little about each ones family life and since we share some of our very personal information with one another, I had hoped to gain a little insight of what makes up each of your families. 

Wishing you all well and a very good evening.  I’ll check in later to catch up on anything that might get posted while I’m away.  As always, I’m so thankful to be included in this little group.  I never thought I’d be one to share but we all got thrown into this strange, new world unexpectedly.  It shocked me to my core and I’ve found I NEED the support and encouragement of others going thru this journey – so thank you all for just being there!

Lili

Yes, Rosh Hashonah it is!  Spent the first night at my daughter's apt in the city.  Since I can't cook now, we brought in and she and my husband served and cleaned up.  Tonight my son and his family came for dinner-again brought in.  My son and my husband did most things.  DIL didn't lift a finger and didn't have the decency to ask me how I'm feeling/doing.  I did have the best night anyway-loving up my grandaughters.  They are just delicious!  The older one only wanted me to get on the floor with her to count my collection of pennies for the new Mickey stuffed animal we gave her tonight that's bigger than she is.  I coldn't get up and down so I had my husband do that with her.  Usually he doesn't get the chance because he lets me monopolize her since we don't see them very often and he knows how it cheers me.  He was soooo happy tonight which in turn made me happy.  He's been so amazing!!!!

It's been a wonderful holiday for me.  Tomorrow I see the PS in the city so we'll meet our daghter for lunch afterwards-it doesn't get any better than that!

Going to the PS later today- drains should ALL be coming out!  So happy!!!!!!

Lili- let us know how your fill goes. Im anxious too for how it will feel. My PS said he does 50 cc at a time, so that doesnt sound too horrible. He did 100 during the bmx,so it doesnt seem like it will make a huge difference, but thats ok with me.

Regarding college kids , yeah- she is a different person after a few years in college. She went thru the typical horribleness in high school, but by the time she graduated had returned to earth as a normal person. I can see over the last 3 years her maturing and realizing what life will be like as an adult...I think she is open to anything I want to discuss with her about things, but not necessarily going to ask first...which is ok!