Just diagnosed and headed for surgery

Nagoskwe

I was diagnosed with infiltrating ductal carcinoma in the right breast, am waiting for the BRCA test, but am having a double mastectomy on July 8th. It is hormone receptor positive for both estrogen and progesterone, and am waiting for the BRCA test results. Have a family history of breast cancer, so the mastectomies makes sense to me. Have no idea what I am in for. I just know that i will most likely be facing chemo, and reconstruction, as well as hormone treatments.

Yes, I am scared but am trying to not let it effect my decisions. I feel like my world has just been turned inside out, and nothing will ever be the same.

Moderators

Hi Nagoskw, welcome to Breascancer.org. Sorry you have to be here for this reason.... but we're glad you've found our community, a safe place where you can feel free to ask questions and share your concerns, and hear from other members who have undergone similar experiences. Until you have answers from others here, you may find interesting to take a look at the section Breast Cancer 101 from our main site, with links that will direct you to the pages on Breastcancer.org that will help you understand test results, the individual characteristics of the cancer, treatments that are recommended for you, and more.

Hope this helps. You're not alone. (((HUGS)))

The Mods

Englishmummy

Nagoskwe,

I am so sorry you have to be here, but I have found Breastcancer.org to be a sanctuary over the last month. I am new to this myself but I am the other side of surgery.

I did the same thing as you - diagnosed to surgery. I was diagnosed on May 22nd with Bilateral breast cancer - a bolt from the blue with no known risk factors, no family history (ever) and only 40 years old - well, almost 41. I was blown away....many factors will affect what will be decided as far as treatment goes, they'll know more when you get your results fully. Please take some deep breaths as hard as it seems, it really helps.

I had a nipple sparing BMX on June 10, I had pretty small boobs and the PS and BS both felt that pyschologically, having BMX would have a better cosmetic result which they felt was important for younger women - I had already decided that, that was the route for me so I was pleased they concurred and swayed my hubby. Some people like to take their time before doing anything - getting 2nd opinions, researching alternative treatments etc. BC grows slow for the most part (or so I am told) so that is great, if time is what you need, but that did not work for me, I trusted the BS and the PS so I felt comfortable going forward. Once I make my mind up, I need to go on - sounds like you know your own mind.

I had a paravertebral block (I highly recommend asking about that - it was amazing in terms of pain relief and recovery) and TE's with 250cc which was a complete surprise when I woke up  (I am thin, they did not think they would fill in surgery). I woke up the same size as I went under (breast feeding 3 children for combined 6 years takes it toll . I am shocked at how quickly I have healed physically - I believe it was due to diet and vitamins, along with a positive outlook..... It was/is scary but I don't regret it - I am a no regrets person, it was definitely the way forward for me. I would be happy to chat more about the surgery or anything else if you wish? There is also a July surgery sisters forum (I used the June one as a lurker, only signed up yesterday https://community.breastcancer.org/forum/91/topic/832453?page=6#post_4428764

I completely understand about your world being turned upside down and inside out - I think it is the same for everyone on here, that is perfectly normal and even this early on, it DOES get better - some days are better than others, granted.

 As far as never being the same again, somethings are exactly the same. I read a lot about a 'new normal' but as I said, I am fairly new to this too so I am waiting to see what mine is. But, I can tell you that I feel more positive, more resilient as each day passes: I realise that I am still me, and the constants in my life are of great comfort.

 I have 3 young children and I am waiting on the BRCA test too - I hate to think I passed anything on to them; it all just seems so unfair (not that I am anyone special - it is unfair for everyone that gets this or another diagnosis), but once you have a treatment plan in place things settle a little, and I am sure that time does his part too. Allow yourself the range of emotions you will feel, you are entitiled to them all.  I have been keeping a diary too, something I have not done for many years, it seems to help me a lot, writing things down.....

 

Extending a virtual hand, to hold or squeeze.

Laura x

 

 

ingersollnic

All the best for your surgery. I was diagnosed with bilateral breast cancer on May 28th so another one new to this. I had lumpectomy's and sentinel node, due to the limit of imaging (even though a lot of all types were done) they did not get it all so 2 weeks later I had LHS mastectomy and was planned to have RHS 2 weeks later (my surgeon is very cautious so does one at a time but I would have preferred bilateral in hindsight) as now I am starting Chemo tomorrow a week after second surgery rather than have the third surgery first.

I heal very well, and physically the operations were not as bad as I feared and I have been back to normal activities within a few days. I worked from my computer in hospital the day after each operation and have no limited movement etc so don't be too worried. As for the reconstruction etc I am 42 and the feeling of the LHS being flat feels so free and comfortable that I am not sure i will go down that route afterall. My doctors say it can be done after all the treatment when I decide. Keep in mind i have a different cancer so different treatments of course - I have (large ILC) with one node showing cells attached to the cell wall (other nodes tested negative) one side and DCIS the other side, so the studies indicate chemo then needs to be done as soon after surgery as possible for the best outcomes. Looking back although the lumpectomy works well for most, for me a bilateral mastectomy would have been the best treatment.

I have to admit mentally I have found it hard, as being so healthy and happy and very complacent with my life expectancy in the past, as it is still new to me I am struggling still with that side of it, but I accept that is normal and I will remind myself that no-one knows the future so why waste life worrying about it, all you can do is throw all the best weapons at this thing and look at the great outcomes for so many women with breast cancer now compared to just 30 years ago.

Nagoskwe

I would indeed love to chat more with you! I am unconcerned with keeping my nipples especially considering I am pretty sure I would have to loose the one on the right any way, I am already thinking of tattoos for the new ones when all is said and done. truthfully I am not sure that the surgery is as scary as the chemo I am facing. I am very small only about 100 lbs and am concerned about what it will do to me. you are right in that some days are better than others. I have days when I feel like a phoenix waiting to rise and others when I feel like I want to crawl into bed and never come out.

I am grateful that my family will be with me, and that my son who is in the military will be home tomorrow to be with me for surgery. the hard parts are those moments when everyone knows there isthis ugly giant elephant in the room but we all try to ignore it.

Thank you for the link will be going there right after this! can use some sisters to hang with and talk to after surgery.

Trvler

Chances are pretty good that you will be BRCA - unless you are Jewish. I know how you feel about nothing being the same. I feel that way every day. Try to take one day at a time and not look too far into the future right now. It is easier that way. May I ask your age? Can you post your diagnosis in your signature?

Nagoskwe

Am 51 years old, unsure as to what stage yet, and I can't seem to think past getting dinners ready and in the freezer for next week.

Trvler

Do you know how large your tumor is and if there are any + nodes?

Nagoskwe

not sure how many centimeters, but it was about the size of a walnut without the shell from just what i could feel. Won't know if nodes are involved until the surgery they will check then and if they are will remove them at the same time they do the mastectomy.

Englishmummy

Please keep heart, Nagoskwe - stay bright. My right side lump was 2.2cm and a grade 2 but I just confirmed Thursday that chemo won't be appropriate for me, even though I am young (41) - just Tamoxifen.. albeit for 10 yrs. I am small too so I understand your chemo fear, I had that too, but trust in yourself, your God if you believe, and your Dr's, ask questions - you can make it through, you are strong. I am almost a month out from surgery and am back to running on the eliptical, cooking, light cleaning, and homeschooling my 3 children - things I could not imagine doing ever again 4 weeks ago. Now life seems more calm, more normal, there is a plan/formula in place and I can function, I have to... I still have moments of being overwhelmed or the fear of my mortality shows its ugly head, but they are easier to contend with, even though I know it will never be the same again. All of the emotions and feelings you describe above are likely felt by everyone on here.

 I hope you got your dinners done and put up and it is wonderful that your son is going to be there with you.

One day at a time is good advice.

I want to wish you good luck with surgery: I hope you read up on some of boards for tips (such as taking a stool softener, buying a wedge pillow and having button up blouses etc.). I also took 2000mg of Vit C and a good quality multi Vit with Iron and I have really healed well. I felt a sense of relief after my surgery, feeling that they got it all out (I know the reality but I 'choose' that belief). Keep thinking positive, in my very humble opinion, mind over matter is a major component in the healing process not just for the phsyical, but the mental too. I use guided visualization as that works for me, but others use prayer, all types of meditation and yet others need nothing but the love and strength they draw from their families and friends, from what I see there is no right or wrong way to deal with this.

I shall be thinking of you. Love, light and blessings, please keep us updated on your progress. Hugs, Laura x

 

Nagoskwe

Thank you so much. Yes i got all the meals done and ready, have my wedge pillows, button up tops and comfy PJ,s have some one who will take my dogs for walks when I can't, Have a mesh bag for drains in the shower, and plenty of baby wipes for when I can't shower.

sometimes I think this will be harder on my family than me. They are used to seeing me do for them and have never really had to deal with things like this. they have been amazing in getting things ready, and yes I do have a belief system, I am Native American, and we do our prayers every morning. I try each day to put my trust in the path I am walking and believe that each step will be guided as it needs to be.

I go in today to deal with the last of the paperwork for surgery, and then out to dinner with my family for one last wonderful meal before I am stuck with hospital food. I will prob not be back on hereu ntil after I am home form surgery.

I am about to boldly go where most fear to tread! Once more into the breach!

Englishmummy

 You Rock!

BarredOwl

Hi Nagoskwe:

I saw your concern above about being only 100 lbs. If chemo is needed, please know that chemo doses are typically adjusted according to the size of the patient, and you will also be monitored. You can confirm this with the medical oncologist if a particular drug or drug combination is recommended. If certain adverse effects are experienced, there are tested protocols for adjusting the dose downward.

For now, glad you have made such progress with your preparation!

BarredOwl

Nagoskwe

I am glad to hear that medication will be adjusted for me, that helps relieve some of my fears. Tomorrow is the big day for surgery, and already have butterflies in my stomach. It feels rather overwhelming, have family coming in tonight, and some of them are already here, trying to stay strong for them while dealing with my butterflies is hard, especially since I am putting one of my sons on a plane to poland today. He keeps asking if he should cancel his plans with is finance, and I keep telling him I will be just fine even though I don't really feel just fine.

I think the hardest part for me will be the loss of my hair, being Native means my hair is very sacred to me, and the loss of it will be very difficult to handle. I keep reminding myself that it will come back, but it will never be the same. am thinking of having it cut (it is waist length) before chemo so I can place it with my other sacred items. It truly is a toss up as Native women do not usually cut our hair unless we are in morning or ready to cross over. though perhaps I will be in morning for what I have to go through.

I do not know what my Creator has in store for me for the future, I just know that I will do the best I can to face this as the warrior I am, with as much dignity, and grace as I can muster on any given day.

Nagoskwe

I try very hard to be prepared, and to make sure that everything that I can do is done. Leaving the rest to others will be hard for me.

Englishmummy

I think it is for anyone that is a mum....I know it was for me too...I homeschool and my hubby calls me 'CEO of everything"!  The children had 2 weeks holiday (we school year round), I had cooked loads of stuff for the freezer, wrote shopping lists, menus, cleaned house, did laundry, etc. But you know what?.....Between my hubby, my S-I-L and my lovely children, they all did a bloody good job! I was well impressed and very thankful....Be kind to you, don't be afraid be a little vunerable, it is a chance for those around you to show how deeply they love you. You could very well be amazed at what you see or new good 'habits' that form.....Not saying that I wasn't happy to see my hubby off to work after 2 weeks - which, I'll be honest was a little long...I needed my routine back to function and heal.

As regards to your beautiful hair: Cutting it and saving it with your other sacred items seems fitting - I would not profess to know very much about the Native American Culture and traditions. Acceptable to say you are mourning the life you had and when your hair grows back it can be a celebration of your new life?

I hope your butterflies fly away - You are a warrior, you will prevail. I am thinking of you. Blessings and light for you and your family.

BarredOwl

Well said Englishmummy! Best wishes to you Nagoskwe.

BarredOwl

lintrollerderby

As for chemo in relation to body size: there's not a one-size-fits-all dosage given to every patient. Chemo is either based on body weight, typically a ratio of milligrams of the chemo per kilograms of the patient's weight (mg/kg) OR by body surface area (BSA) which is calculated using a patient's height and weight and coming up with BSA using meters squared. I asked my MO about this when she told me I'd need chemo. I'm 5'1" and 97 lbs.

Also, even with those calculations to determine dosage, the MO can further adjust for things like low counts, etc.

Trvler

English: What a lovely post.

Nago: I also am not familiar with Native Am culture. That's really interesting about the hair. I am sorry. I know it's hard. I wish you all the best with your surgery and big hugs.

Jesika63

Englishmum- was that your only treatment? Did they suggest radiation? Thats great that you just have to do hormonal treatment.

Nagoskwe, wish you the best of luck and keep firm with your decision.

msphil

hello sweetie,gladu found us, we are here for you, and know your feeling for we hwve been there and some like you going thru, hang in there, to Inspire you i am a 21 yr Survivor this yr(Praise the Lord) i stayed Positive thru out my treatment and i also kept HOPE. msphil(idc,stage2, 0/3 nodes, Lmast, chemo, befroe surgery and after, rads and 5 yrs on tamoxifen)

Englishmummy

Thanks, Trvler & Barred Owl. Msphil 21 years! Congratulations! Your post was perfect timing as inspiration. Do you have any stay well secrets other than the 2 listed above?

Jesika63 - my bmx is not showing in treatments, I need to fix that....so I had 'just' bmx and 5-10yrs Tamoxifen - surgeon & onco have a difference of opinion - the onc would not commit to 10 yrs as she said there are a lot of new studies & treatments possibly on the horizon...I surely hope so. A total, known cure would be nice and way overdue. No radiation was ever mentioned, the surgeon got super clean margins and I had no node/skin involvement. My onco was 11 and the cancers were 'indolent' as far as activity, so no chemo, plus they were highly er/pr + so Tamoxifen it is. I am actually feeling kind of weird as I have no appointments except the PS and PT until October, as crazy as it seems I feel 'guilty' for want of a better word. I was dx 5.22 had nsbmx 6.10.15, follow ups and now nothing for 3 months.....I called everyone to be sure they didn't overlook or miss anything as I am feeling a little freaked.

BarredOwl

Hi Englishmummy:

The abrupt cessation of appointments seems to be disconcerting to a lot of people. You focus all this energy to educate yourself and get through what seems like a million appointments/treatments and then it just stops. I found my appointments with the PT helped to ease the transition a little.

After the flurry of activity, when you hear the recommended follow-up, it's like: Really? That's it?" This caused me to look it up. In case you are wondering, here is what ASCO (American Soc. of Clinical Oncologists) recommends from its patient pages:

http://www.cancer.net/research-and-advocacy/asco-c...

The article at this link (see full text tab) compares various follow-up recommendations in Table 1 (click on it to view). Note the additional recommended gynecological assessment if on tamoxifen:

http://dx.doi.org/10.1016/j.critrevonc.2014.03.001

BarredOwl

Englishmummy

Thank you, BarredOwl...you are both logical and wise! I have read several of your posts and an owl handle is perfect for your wise rationale. They are both great articles, particularly the second. I have my annual appointments set including baseline line US as guide for Tamoxifen induced changes, and was given more or less the exact schedule : every 3 mths for 2 years, every 6 mths through year 5, annual follow ups through year 10.

Again, really appreciate your measured response. Wishing you a lovely Wednesday.

queenmomcat

Nagoskwe: yes, this does turn our world inside out, doesn't it? I'm only Stage 0, but still feels like everything came to a screeching halt, leaving my life cut in half--before and after. And another "in sympathy for your hair". Bad enough when losing your hair's only a cosmetic issue!

BarredOwl

Englishmummy:

My owl handle is actually because I silently lurked for two years before hooting!

BarredOwl

magiclight

Nagoskwe: The warrior that you are will help you through this, but as you know warriors often do there best work when part of a team and that requires accepting help from others who are also warriors. As the one with BC your challenge as a warrior is different from but linked to those of your family. Stay strong and accept the helping hands of other warriors.

Nagoskwe

magiclight thank you, I am getting better at it, though I do have to admit it is hard for me.

Englishmummy

Hi Nagoskwe! We have been thinking about you - sending positive energy your way. It IS hard, but don't let that deter you. We are all here for you. So good to hear from you. Heal well.

magiclight

Hi Nagosekwe: Based on your earlier post I'm thinking your are a few days post-op and have your wedge pillows, comfy pj's, if needed some pain meds that work for you, and someone to walk your dogs so they are tired and want to just quietly stay by your side.

I'm sending healing thoughts your ways for an uneventful recovery.

Nagoskwe

Yes I am one week post -op today. Go back to doc tomorrow and hoping the drains come out. I am finding it interesting that more often than not most people expect me to be miserable, or very sad. I am neither. Oh I have my moments when it gets to me, but for the most part I am not sad, or miserable. Everyone keeps telling me I am doing so much better than they thought I would. I don't know if that is just them being nice, or if I am just doing good. Either way I am happy with where I am right now, and good with how I feel.