Admitting I'm a coward

Barbthemathtutor

Hello. Since my first abnormal mammo to today, it has been 7 weeks and 2 days. I'm losing my mind with worry. I have had repeat mammos, a core biopsy, this week an MRI, and I got the call that I have ILC, grade as high 2 or low 3, whatever that means. I am supposed to meet the surgeon on Tuesday, and I'm just so afraid of what he's going to say! How do you bear this?

I just know that they're going to recommend a bmx, and I'm terrified of being helpless, and the remote possibility of losing any functionality of my only hand. Could someone please explain lymphedema to me? I tried to read about it, but most of the info downplayed the possibility.

Anonymous

I'm sorry you have to join us, Barb, but these discussion boards were a lifesaver, literally, for me, from first dx through to right now, years later. I hope you'll find them calming and with a lot of reassuring information as I did.

Mastectomies are often a choice of the patient now, and not necessarily recommended. E.g. a lumpectomy and radiation tx are found to be as effective as an MX with no rads in many cases. Lots of women are not getting mastectomies and instead going with lumpectomy and rads instead, and are keeping their breasts.

Depending on size of tumor, any positive nodes, etc. a lumpectomy may be as effective as a mastectomy.

I had a bilateral mastectomy because ILC has a tendency to be multi-focal (involve both breasts) and I had + nodes, so I was high-risk already; I just wanted to give myself every chance at kicking cancer out the door. But even my oncologist told me I didn't really need to get a mastectomy and told me the survival rate was the same with rads and lumpectomy!

Grade means the aggressiveness of the cancer. Grade 3 is most aggressive but also seems to respond best to chemotherapy, too.

There are ways that surgeons can reduce the possibility of lymphedema, and other things you can do, too, after surgery, to reduce the potential. The less nodes removed, the better, and it's possible they won't find one + node, meaning none will have to be removed.

I know it's hard to wait, but try not to borrow trouble till you have your complete pathology and dx, and if you feel okay doing it, share it with us when you get it; it will help all of us who've been through this help you get through it.

Hugs

Claire in AZ

Georgia1

Hi Barb. I'm just chiming in to agree with Claire. It is all so overwhelming at first! But it sounds like your doctors are doing all the right things.

I had a mix of IDC and ILC, and had multiple mammograms, an ultrasound and an MRI. Ultimately I had two tumors near each other and had a lumpectomy + radiation. I will soon go on tamoxifen or an AI, which are very good at preventing recurrence. And I've had no lymphedema.

Please don't feel you are helpless! Get copies of the full reports from all of your tests, ask questions, and keep coming back here for help. Thinking good thoughts for you.

Barbthemathtutor

I really appreciate the answers, but I have SO many more questions.

1. How do I get the pathology reports, if the office seems reluctant to release them?

And I am in such deep mourning over these next questions that I really hate to even post them, but here goes.....

2. What is intimacy like after lumpectomy or mastectomy? Will I lose all sensation there like in the lower half of my torso after my c-sections? My husband is very supportive, but I am still worried about this!

3. How do you handle changing in locker rooms? I am a swimmer, but the only places to swim within an hour of my house are junior high/high school pools. These young ladies are very observant. And I work with some of them!

4. How real is chemo brain? Because I was born with only my left hand, when I finished my degree I could not get a job--anywhere. I fell back on being a math tutor to pay my student loans. It turns out that this is what I was always meant to be. Tutoring makes me so happy, and I love all of "my kids" so very much. I don't know if I could bear losing my ability to think clearly!

Georgia1

Good questions!

Those are your records: mammogram, MRI and biopsy. Call every day until they email them to you. Or show up and don't leave until you get them.

I had a lumpectomy and my sex life was unaffected. Masectomy is different and there is a whole thread on this site on love and sex to discuss.

Changing in locker rooms feels the same! Girls are so weird about anyone who is old, overweight etc and a scar is no different.

I haven't had chemo but I understand that side effects vary a lot from person to person.

Snickersmom

Welcome and please know that what you are feeling is what we all felt! I just had a bilateral mastectomy in May, 2017 and I am still struggling with the emotional impact. I actually turned 70 in May so this was my big birthday present to myself! Woohoo!

Seriously, talk to your doctors. Go to appointments armed with your list of questions and make sure you get each and every one answered in layman's terms. And take your husband with you. My husband was able to remember things that I didn't even know my surgeon had talked about. So two sets of ears is definitely better than one.

You just keep leaning on the for your reports and anything else you want to know. You are the patient and you have the right by law to any and all of your records.When I had my surgery, I told my husband to come and look at me and he did, and then said "Do you really think I married you for your breasts?? Did you marry me for my penis?" We both had a good laugh and that was the end of it. He did my drains and has been my rock, so make sure you include your husband and lean on him for strength.

I was a Stage1A, with no lymph nodes involved. So that made me a good candidate for hormone therapy, and I am on Arimidex and Fosomax for who knows how long. I honestly don't are as long as they work. I didn't have reconstruction and I am okay with no boobs most of the time. Sometimes I wear my mastectomy bras but most of the time I just go flat. And guess what - nobody notices and if they do, they don't care. I am taking Zoloft with an occasional Xanax and I don't care if I take them forever. The Zoloft helps keep me pretty calm but not a zombie. Your doc should definitely give you something to help take the edge off your anxiety. I also take Melatonin to help me sleep. Yes, I don't like taking all kinds of pills for this and pills for that, but if it helps me, I'm okay with it. I'm not a hero.

I don't have chemo brain but I do have Arimidex brain. So I forget words here and there, etc. Now I write things down and that does help.

Go ahead and have a good cry and a good old pity party. Then just keep telling yourself that you are going to be the winner in this battle, girl!! Remember that you have thousands of BC Sisters all around you and we are always here for you.

Snickersmom

Here I am again - I got up on my bandwagon and then forgot what else I wanted to tell you!

I was originally scheduled for a lumpectomy but then they saw 2 more spots that they couldn't identify in that breast. Unfortunately, they were all in different quadrants so my surgeon had to take the whole breast. I told him I did not want to have to worry about the other one so that's why I had them both removed. And I don't regret it for one minute. It was the right decision for me. But let your surgeon guide you as to what your options are and then take a day or two or three to think about what you want to do.

pupmom

Sorry about your dx and the other stuff you've been dealing with. That sucks.

Regarding lymphedema, it usually relates to lymph node removal. You don't know yet if any nodes will be removed, so try to calm down about that. Personally, I can relate that I had 21 nodes removed, and 6 years later have no signs of lymphedema. I was even part of a lymphedema clinical study for the 5 years post surgery. I am completely free of that disease. Try not to borrow trouble.

Want to add that none of my cancer treatments effected my sex life with DH. This does not include post surgery recovery, of course.

illimae

Barb,

You’ll probably hear this several times but you will feel better and more confident moving forward once you have a treatment plan in place.

Reports: They’re yours, insist on having them emailed or printed for you.

Intimacy: This is somewhat dependent on hormonal status and meds. I’m ER+, so estrogen needed to be suppressed for me, chemo put me in early menopause (chemopause) which reduced my desire and the chemo drugs dried me up making sex very uncomfortable. There are other ways to maintain the relationship and moisturizers that work well after chemo. Had lumpectomy and kept the sensation.

Locker room: I have no advice for this but I was able to have lumpectomy with lift and reduction (DD to D), scars are minimal and although smaller, they look pretty good.

Chemo brain: This varies by treatment/person as does fatigue. I was lucky to avoid both. I manage a multi million dollar budget at work and never had issues, I also stayed active daily and did my 1st 5k during chemo and my 2nd a week after brain radiation.

I’m concerned about lymphadema too, my left underarm nodes were removed during surgery and my risk increased due to radiation but so far, so good. I do take precautions, like avoiding sleeping on my left arm and wearing a sleeve during the 5k.

Best of luck to you!

Barbthemathtutor

Thanks to all! You are an awesome group of strong women. I'm trying very hard to find the happy, creative, and buoyant person I was before this started. I'm just so very nervous, and the first radiologist report that sent me to specialists said that I have heavy lymph node involvement, so the what-ifs keep rearing their ugly heads. I haven't held food down in 3 days. I really want / don't want this information!

It's finals week, so I'm working for the next 11 hours straight. That ought to distract me! Precalc, here I come! Alg2, geometry anybody?

Sorry, trying to get my game face on!!

Hugs to all. Hmm...this is Indiana, after all. Trying to look through my tears to see if I am sending hugs or hogs to all....

wallycat

Barb, you are not a coward. You are human. No one in their normal lives wants illness, never mind a life altering one.

You may not be getting any results yet because they have not come in. Doctors do not try to hide this information because they need to discuss "the game plan" with you once they know what's going on. Having said that, there is no reason you cannot call every 4 days and see when you need to schedule an appointment to go over the information they have. Once you meet up with your doc again, they will go through the results and their opinions on what you should do. You cannot assume you will need a mastectomy or that you will get LE. None of that is preordained. Hard not to think ahead but sometimes a waste of emotion and energy. And none of us is immune from doing it!

Math...I envy you liking it and enjoying it. Geometry...LOVED it. Logic...LOVED it. The rest, no thanks ;-)

Chiarara

Barb, hugs to you. It's such a tough time and the pressure to make far-reaching decisions in the face of so many unknowns is very tough. Feeling overwhelmed is normal, this is an overwhelming situation, NOT an indication that you are somehow a weak person or a coward.

For what it's worth, I found that my recovery from the UMX has been much easier than the lumpectomy. Numbness was definitely (thankfully) present at the start, but reduces.

If you are a keen swimmer, make sure that you ask a lot of questions about how any recon could affect your movement. This was a concern for me, and played a big part in why I decided to go with no recon. it seemed to me that a sub-pec implant was more likely to cause range of movement issues, the pre-pec implant seemed to need a lot of extra work to make it look good, and maybe still a bit of an unknown in terms of long term outcomes. Plus implants will need to be replaced. I was just not motivated enough to go through the significant extra surgery required for own-tissue recon.

In terms of what others think- I've been assymmetrical all my life due to a minor congenital birth defect. When I was a child, some other children did react oddly when they realised. As an adult, it is rare that anyone notices, or comments if they do notice. In the end, I can't control what people think about how I look, but I have to assume most people are kind. After all, I wouldn't be appalled if someone I was changing with had a body that was atypical in some way (in fact, I am usually focused just on not looking at others!).

EastcoastTS

Barb:

So sorry you find yourself here but thankful you've found a place that will provide support, advice, encouragement and understanding. I know it has for me. I could not have made it through the past year without these folks (women and men).

You're in the worst place as you struggle to gain ground with your diagnosis. I promise this gets better as you receive more information and put a plan in place. Promise!

I agree on asking a lot of questions -- of your plastic surgeon -- about reconstruction should you go that route. And ask women here who have had what you choose to do. They will share their experience, which I found terribly helpful. I also prepared well for surgeries this way, too.

I had BMX with implant exchange, and I'm really starting to like the implants (3 months post). It's taken almost my entire year, this lovely BC shitola, but I've made it through it and YOU WILL, TOO. I do have some numbness that I'm working through getting used to. It may get better. Not sure. Other than that, I have had a "good" experience. No lingering issues.

I did not have chemo but take Tamoxifen (which I've read can cause chemo-type brain) and really all that has been is I can't pull a word to the front of my mind sometimes. But this happened before C and I figured it was my entering menopause. So -- big deal, right??? As someone here said, don't borrow trouble. Get your info, chose your medical team, research your plan and stay focused on health and peace. Some of this we have to simply chip away at as it hits us. One step complete, okay on to the next.

{hugs!}

luv_gardening

Barb, studies have shown that chemo brain starts before chemo, In fact one study showed it started before diagnosis. ILC grows slowly and is often present for many years prior to diagnosis. For me I noticed problems with word finding about 15 years ago which increased over time. This did not get any worse with chemo 8 years ago. I still struggle with it daily. I'd suggest if you're not having symptoms now then you won't have any, or just minor temporary symptoms.

For the locker room I suggest you use the experience as an opportunity to educate anyone who seems startled or curious. There are so many myths around BC. Many think they can't get it because no one in their family had it. Yet only a small percentage is inherited. They think it's a lump and shows on a mammogram yet ILC can be just a thickening that's hard to feel and not showing on scans. If they are young people, there are so many promising studies happening that maybe they will never have to have our current treatments but just take a pill and it goes away, so there are positives to pass on. And at the end of the day they may feel warmer and closer to you for sharing.

After 8 years, one complete lymphatic clearance and one partial, I don't have any sign of lymphodema. I think it helps to not be overweight and I lost weight rapidly on diagnosis in a bid to get fit. I use a Fitbit to ensure I keep moving every day and try to eat well. Then I know I've done all I can.

beach2beach

Sorry you find yourself here but welcome. These wonderful women have said it all already. Once you have all your info and a plan you will do it. I chose a bilateral mastectomy. Key word, chose. I'm an anxiety ridden nut, so i did not want to go the route of increased surveillance. I did not have Chemo or Rads. As for the mastectomy itself, out in one day. I had a pretty uneventful recovery. 4 months out and my issue is really my armpit on my right side, where the cancer was. It's still ultra sensitive and a little swollen. Hoping it will retreat with more time. Currently on Tamoxifen.

You can do this. Breathe. Waiting is horrible, but you will soon have what you need to move forward. Hugs...

Barbthemathtutor

Thanks for the encouragement. I'm so sorry I'm such a basket case. Every time I try to focus on writing down all the questions I have for the doctor I get shaky and queasy. My gyn told me that he absolutely will not prescribe any anxiety meds bc I have too many important decisions to make in the coming days and I need to have a clear head. However, I am only clear on one thing: I am so so so scared!!

EastcoastTS

That's a silly statement from your Gyno, frankly, in my humble opinion.

Can you ask your PCP perhaps? Others can chime in but maybe even the BS can prescribe. Good grief! Going through this without any assistance is not required.

EastcoastTS

And it's okay -- it's completely NORMAL -- to be scared right now. But just keep somewhere in the back of your mind that it will get better. And the fear will lessen. It will.

Barbthemathtutor

I have been joking with my students about how my hand and my brain are never on the same problem at the same time lately. It's been going on for about a year. I look at what I wrote, and frequently it isn't even close to what number I was intending to write. It is always a surprise, and has lead to some interesting math problems to be sure. Nothing like being perennially stuck in hs math.

Should I mention this to my doctors?

Chiarara

Not sure what the gyno is talking about- it's not like you're going to be guzzling tranquilizers all day. Having something that e.g. helps you sleep for a few weeks could be a big help, and that may of itself help reduce your anxiety ( I find anxiety comes on easier if I'm tired, personally).

Break it down for yourself in manageable chunks- for instance, don't try to figure out all the questions you might have. Just write down questions related to surgery for the cancer, or surgery for recon.

That said, I found I had to just do a lot of the research by myself in order to work out what questions to ask. It is a steep learning curve on a topic that, frankly, I was never very interested in learning about!

Amelia01

luv-gardening: do you have any links to the study which shows ILC affects the brain and do you recall if it pretty much means that the nasty cells head there? I've been fuzzy brained for at least a few years, I handle life in two languages so thought I was just mixing up words but a little voice in my head was telling me something was up

Barb - this is all new to me too. I commiserate with you and your feelings of anxiety. It took me at least a month to start to digest any of it. I think that anti-anxiety drugs are fine if you need help sleeping or just having your mind elsewhere for a bit. I'm not sure about others, but at least in my dreams up until now, I have my escape. Hugs to you. xx

Barbthemathtutor

Hi Amelia. I dosed myself with Benedryl last night, so I slept without nightmares (at least none that I remember) for the first time in 2 weeks. My husband works nights, so I keep reaching out for him in my sleep, but he's at work. I have a lot to do today, all related to my appointment tomorrow. I am so glad that this forum exists bc I suspect the next few days will bring more questions.

Stay strong. I'm digging deep to try to find my courage.

Anonymous

Hi again,

Chemo brain for me seems related more to the anti-hormonal I take than anything. I was fuzzy and couldn't think of words for a while post tx, but thinking back I relate it more to the med (aromasin) I take now.

My surgeon gave me xanax and had no problem giving it to me. Since he did the lumpectomy and shared the initial pathology with me, he knew how scared I was. I had a low dose rx and it never made me unable to make decisions.

As for intimacy, yes, I mourn the sensation in my breasts. I have none (yes, it feels like the scars of abdominal surgery--I have those, too), and it is is rather like being dead there. I took some time (about a year) to determine if I'd feel better keeping them and getting scans of my dense breasts that might not reveal a problem hidden in all that dense breast tissue. I decided that I'd sacrifice them for peace of mind, since I had 5 yearly mammos before I found my problem on my own and all those scans were supposedly "clear".

I practiced bikram yoga all through treatment, including surgery. I never worried about what other women would think. I have scars but they are minimal; I had a good surgeon, and frankly I'm grateful to be alive at all. I do believe that women in locker rooms aren't looking at anyone but themselves, and probably hyper-judging all their own lumps and bumps. I've never seen anyone stare at any of my scars. I think women are pretty darn considerate when we are are in various stages of locker room naked, overall. If someone asked about them, I'd tell them. I have found that when I do share with a stranger that I've had b.c., more often than not they will tell me they, too, were dx or their mother or sister or friend was. We aren't alone in this.

It has affected my sex life a bit, but I could also attribute that to age and the fact that I'm taking an anti-hormonal, which also has side affects regarding sexual desires. It was a hard decision to make-getting a BMX, but it was worth it. I have a lot more peace of mind.

Hugs

Claire