Just diagnosed with ILC

ingersollnic · June 2015

I am 42yo and felt a lump near my ribs in my breast. I was sent for mammagrams and ultrasound on both breasts and then core biopsy of both breasts and have been Dx with ILC in the LHS, 21mm but advised often larger when they operate and DCIS 38mm on RHS breast, same lower quadrant. I am having CT scans, mammagram and bone scans tomorrow and will have a lumpectomy for both lumps and testing for the DCIS to see if invasive as well, and some node testing on either Friday or Tuesday. I have four teenage children and work full time and feel quite shattered. I am pragmatic though and won't waste time on pointless feelings of why me (as why anyone?). I am just hoping to hear some stories from people who have been through this.

Moderators · June 2015

Hi nicevolve. We want to first welcome you to our community here at BCO. We hope you find it to be a place of support and helpful information! And yes, we're sure you'll find tones of similar stories here.

Good luck with tests results! Please keep us posted.

The Mods

MrsDarcy · June 2015

Good morning NiceVolve,

Welcome - although I do know there are probably a million other places you would rather be than here But it's a fabulous support group on here .. and some very knowledgeable women to speak with as well !

I also had ILC .. a 3.5 cm mass on my left breast. I had a lumpectomy and radiation. I am now almost 2 years out (October 2015 will mark 2 years) and doing great

It's most certainly a bumpy ride, but you will be well surrounded here. Please be sure to let us know how things are going .. we are all here to lend an ear .. and share our stories (exactly what you are looking for!).

Big hugs !!

MD

ingersollnic · June 2015

Thanks so much MD. My father was diagnosed with MDS this week (bone marrow stopped working) so he has months or years to live so it has not been a good week. I had my CT scans, bone scans and more xrays yesterday and I see my doctor in a hour and she hopes to have the results from those, so I am just wanting to hear that it has not spread and then I feel I can cope from there. Thanks for letting me know you are 2 years on and OK, it is just what I need to hear at the moment. I have only told hubby and kids as the family needs to deal with Dad's news first I feel so feeling a little alone.

Thanks again, Nic

Nomatterwhat · June 2015

Welcome nicevolve!!! I am sorry to hear about your father. You have certainly come to the right place. These ladies are wonderful and amazing. You will never feel alone, as someone is always here to listen and help. You will find new friends, some for life. You will learn more things from these ladies than you will ever learn from your doctors, but please stay off Dr. Google, he is BAD!!!! Look around the boards, feel free to join in and take your mind off your diagnosis for a few minutes.

I have been through those biopsies, ultrasounds and MRI's and was told that I had a 1.9cm lump. When I woke up from my lumpectomy my BS told me that my right breast had turned blue from the dye and it was 98% full of ILC. Upon further testing it was also discovered that I had DCIS in my left breast. After a long talk with my husband and many tears later, I had a BMX (with no recon) in August, chemo, rads and now am on Femara. I didn't miss a day of work, other than for appointments. I have always tried to stay positive and do believe that is what has gotten me through this journey. That and my husband holding my hand and kicking my butt when I needed it.

Have your pity parties, and you will, cry at the smallest things, and you will, but just remember you will come out on the other side of all this.

ingersollnic · June 2015

Thanks so much for your reply. I had a lumpectomy both sides and sentinel nodes. The LHS came back as 5cm ILC and they did not get clear margins. The RHS they did get the DCIS 38mm but found more microcalcifications. They have recommended Masectomy LHS and chest wall scraping, and RHS masectomy. Then Chemo, Radio and Tamoxifen. I was so relieved to hear you worked as I intend to work (I run my own business so necessary). The lumpectomy etc was fine, I was working the next day and on a flight 2 days later but very concerned about chemo and of course the vanity of the masectomy and the hair loss. How did you cope physcially with the chemo?

Chloesmom · June 2015

I had BMX in Dec. Got diagnosis of ILC but as many have reported here it's a sneaky kind of BC. Often doesn't show up on scans and such as involved as it is. They told me no big deal, lumpectomy and rads were recommended by 2 BSs. I didn't trust that and asked for bilateral mastectomy. Best decision I made as would have ended up with that later. I would not have been able to work with chemo. Too exhausted, but it affects everyone differently. Also self employed so that was my biggest challenge. Sorry you had to join us, but glad you are here This place has been my sanity

Nomatterwhat · June 2015

I have great bosses is how I managed!!!! I had chemo on Thursday, Neulasta shot on Friday on my lunch hour and was usually queasy, but not sick, on the weekend and back to work on Monday. I started taking Zofran the morning of chemo with my high protein breakfast and every six hours after that. My nurse told me to take it about 15 minutes before I ate lunch and dinner and don't eat greasy foods. I made sure I took my Zofran every six hours and also took it in the middle of the night. I would get up in the middle of the night and go potty and upon return I would eat several crackers and take a Zofran and go back to sleep. I made sure I never let myself get hungry and ate lots of crackers, nuts and oatmeal. I would carry a two liter of Ginger Ale to work with me and drink the whole thing during the day. Everything else made my stomach queasy and I made sure to eat small meals throughout the day. Drinking made me pee, peeing made the drugs run through my system faster and therefore I don't get sick. I would start my "chemo" regiment about 2 days before chemo day. Eating high protein, for WBC to be high, drinking a lot to flush my body out and taking my Claritin (not D) to help tame the Neulasta effects.

The hair loss was the killer for me. I cried for days when it started coming out. I couldn't accept that I was losing my hair and refused to look for wigs and scarves and hats. My husband kicked me in the butt and held my hand while I got my head shaved and shopped for a wig. I got one for free from the American Cancer Society and took it to my hairdresser for a style. After that traumatic event, I could handle anything!!! I did rads on my lunch hour and made sure all my doctor's appointments are in the morning so I won't be to late for work. My hair has grown back and I do believe I have posted my recent pictures of my mess on the Sept. chemo 2014 thread. It has grown back thicker than before and that was like wearing a fur coat. One of my attorney's calls me "Curly Jo" and he is always commenting how cool it looks.

As Chloesmom says, these threads are definitely a sanity saver. You meet some great ladies here. We are here for you, should you need us anytime. Hugs to you!!!!!

ingersollnic · June 2015

Thanks so much ladies, I am off for my 1st mastectomy tomorrow. Thanks so much for the information too. I always drink ginger ale when I feel even slightly off colour, so I will buy up big and drink plenty and thanks for the other tips, it really means a lot as I am not telling many people that I know about it, just my very dearest ones. The hair thing bothers me more than it probably should also, as I feel it screams to me and the world, that I am sick and that makes me feel upset, as that is the last thing people have ever thought about me and I the thought of pity makes me ill.

Thanks again

Nicole

Nomatterwhat · June 2015

I wish you the best!! I cried for days when my hair started falling out and then it started.....The stupid comments, the pity looks, the "OMG"s and my very favorite "did they get it all". To which I replied, "I hope so, they took both my boobs, there isn't anything left for them to take." Until your hair falls out nobody can tell you have cancer, but that is a sure telltale sign of having it. So, hold your head high and be proud of your battle scars, you have earned them. I just got to the point that I would tell people, I don't know why they were pitying me, I was going to be fine, as for them, I worried because stupid CANNOT be fixed!!!!!

JohnSmith · June 2015

Hope the surgery was a success!

When you're feeling up for it, let us know the pathology report and feel free to browse through the ILC section of the forum if you have any questions.

ingersollnic · June 2015

2 days post op and ready to leave but they are trialling a PICO negative pressure wound dressing which is not behaving - air keeps getting in. Drains out though and walking around and working from my hospital room from yesterday (thank goodness for the hospital room). I should get pathology in a few days, and I meet my oncologist tomorrow on the ward and then I should be able to leave. I want to know if starting chemo should be before or after 2nd mastectomy as other side DCIS not ILC. I want to get rid of it as I feel awful being uneven and everytime I see it I just think cancer now. I did not know who was the reflection in the bathroom mirror but as long as I get to wash my hair daily, I know life goes on. ER 90%, PR 70% HER2 - is all I know at the moment. Chemo, radio and tamoxifen will be prescribed. I will be using the comment about stupid though and I know I will need to use it when I get those looks that show pity rather than empathy. I will update when I know more

MrsDarcy · June 2015

Hi Nicevolve,

I am thinking of you this morning .. although I only had a lumpectomy, I have one breast (to quote Sesame Street) that "is not quite like the other"

I have lumps from the radiation along the scar line and one long mass under the breast (also from radiation). My nipple now goes left (on left breast) and so when the "pointer sisters" stick out, it's quite funny.

But admittingly, at times, it bothers me .. yet - I look in the mirror and remind myself that "HEY!! I am looking at myself in the mirror", It's not the answer you are looking for, I am sure, but I thought I would share it because it means we are still "here" and we kicked (or are kicking) BC's ugly tush !!!!

Just my thoughts this morning .. hugs to you .. !!

MD

ingersollnic · June 2015

I start chemo next week with Docetaxal and Cyclophosphamide and buying ginger ale this weekend

Nomatterwhat · June 2015

That is the same TC regimen I had. You will do fine, just pay attention to your body. Take your meds as you need them and keep something in your stomach. I always ate a high protein breakfast the day of chemo and small meals the rest of the day. We are here for you. Keep us informed. Hugs to you and I will be thinking of you.

ingersollnic · June 2015

Thanks so much, it is such a relief to hear that. Can I ask you about hormone therapy. My surgeon thought Tamoxifen but then the Oncologist says that does not work as well for larger ILC and wants to put me into early menopause to use the other therapy. I realise Chemo can put you through that anyhow but what did your Oncologist recommend with hormone therapy. One of my lymph nodes on the ILC side has cells attaching to the cell wall, rather than in the lymph node itself and he did not like that so that is why he wants me to start chemo 1 week after my operation as my surgeon wanted to give me more time.

Nomatterwhat · June 2015

I obviously am a couple of weeks older than you. LOL!!! After all treatment was done I got Arimidex, which my body didn't like, so my doctor switched me to Femara and I have been happy ever since. As you can see by my profile, it was a little over two weeks between surgery and chemo for me. Make sure you are ready, you are running this show, not them!!!!

ingersollnic · July 2015

I am shaving my head tonight (well hubby is), as I know it will fall out and watching it fallout slowly seems sadder than me taking control and deciding to get rid of it the day before Chemo. I am 8 days post-op today and while I was not nervous about the surgeries (sad perhaps but not nervous), I am nervous about how I will react to chemo, but the fear of the unknown will be over soon and I can get on

Nomatterwhat · July 2015

Will be thinking of you tomorrow. You will do fine, just remember drink, drink and drink some more for the next week or so. Eat a good breakfast or good meal about an hour before you go in for chemo. Keep your Zofran, crackers and Ginger Ale handy. HUGS!!!

ingersollnic · July 2015

Thanks so much. I have been drinking lots and I want to thank you for that advice!! I am only one day post chemo and so far I felt 80% ok last night but not sick and today 100% OK. I had anti nausea drugs through the drip and dexamethasone and so I am told day 3-7 days are expected to be the roughest. Got crackers and drugs near the bed ready.

ingersollnic · July 2015

Feeling rubbish today. Lethargy, no appetite and sharp aches and pains.

Morwenna · July 2015

There is a post-steroid crash. Yes, I remember, as you stated, days 3-7 of each cycle are the worst.

IT WILL GET BETTER! And you are already 1/4 way through your treatment! One down, only three to go! Courage mon brave!!!

ingersollnic · July 2015

Thanks for that, I think I have nerve pain as the surgery was only just over a week ago. The lethargy was overwhelming but I am working from home and I am OK and knowing it will get better makes it bearable.

Nomatterwhat · July 2015

Nice, How is your father? How about yourself? Thought I would check in on you and see if things were okay.

ingersollnic · July 2015

Thanks so much. He is dealing with MDS incredibly well, he is a tough as they come. My oncologist has told me that my regime has less risk of MDS than several other ones, as I would not like to solve one problem and end up with another one that cannot be solved.

I am feeling well, back to normal on most things, and travelling this weekend (so hope no-one is sick on the flight) and only going to a place with good medical care. Been walking each day lately which has helped me. I have been reading lots on AI vs Tamoxifen for premenopausal women as this is my next hurdle to jump. The 5cm ovarian cyst that was being examined has gone, so that is good news. The more I read and think about reconstruction, the less keen I am to go down that path so thinking of after next mastectomy, just leaving it all behind me at that point.

Currently, considering the chemo, I feel very good and it has not stopped me missing a day of work, or going out with the kids etc for the most part. Day 3-5 were not nice due to the nerve pain and fatigue but I am very grateful I have not been sick etc. I wear the wig out so no-one knows and treats me like I am sick and at home loving head scarves due to their amazing comfort and even though my hair has not started to fall out I am very happy I shaved it beforehand as I don't worry about it now. Thanks for taking the time to checkin, as with you having such a similar diagnosis and treatment, it gives me great encouragment!!

614 · July 2015

That is a GREAT comment, "stupid can't be fixed". You made me laugh. Thanks.

Nomatterwhat · July 2015

I considered reconstruction for about three seconds -- long enough for my husband to say "I love you with or without". Great I said!!!!! And down the road we went. However, I am a lot older than you, but I certainly don't miss them. I put on my prosthesis and off to work I go and when I get home, off they come. You will do fine, stay positive and rest assured, there is life after BC!!!!

Have a great weekend, where ever you are headed.

Trvler · July 2015

You might want to go to the chemo section and join a group starting around your start date. It will help you know what to expect with your chemo. It has been invaluable to me. I know what all the possible side effects are, when they will likely hit and what to do if they do. Best to you.

Just diagnosed with ILC

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