Great diagnosis for mom took a turn. Advice please.

DropfootCheeks

Writing this to see if this has happened to anyone else, what to expect, success stories, reassurance...(especially success stories!)

In late May, my mid 50s mom was diagnosed with stage 2 cancer. We were terrified and worried, but the first thing the oncologist said was "Don't freak out!!! Your mom has a very common type of cancer and its VERY treatable! We think she will need a lumpectomy, radiation, and that's it! Do not worry its not aggressive!" So this all started with stage 2 invasive lobular cancer. HER negative. Estrogen and progesterone positive. During biopsy, 1 lymph node tested positive but the rest and body/bone looks clear on scan. Negative bone scan. Entire body scan negative. (yay!) June 9, she had a lumpectomy, entire lymph node removal(they only found 8 and removed 8), and breast reduction. After her surgery, her oncologist and plastic surgeon said the surgery went far better than they expected. She even got her drains out 3 days early because she was healing so quickly!! We were ecstatic. The oncologist said chances are the lymph nodes would all test negative from what she saw...

The day after she had her drains removed, exactly a week after surgery, she got a call from her doctor. After testing the tissue and lymph nodes, every margin was clear except for the final margin they tested. Positive for cancer. And all 8 lymph node, every single one they took, came back positive for cancer. t's been now been upgraded to stage 3C, high risk. She goes back in July 9 (exactly a month from her initial surgery) to remove more tissue. Then in August, treating with 8 rounds of ACT chemo and then radiation and then 10 years of estrogen therapy.

So, obviously this has been a heartbreaking shock. My entire family is devastated. We had such happy high hopes and even joked around "You are just getting a free breast lift!" A complete shock to talk to the same oncologist who was so positive a happy and sure a few weeks ago, to her saying "our whole team is completely in shock about your mom and sadly she is now considered high risk. Hopefully this will get it out of her."

Has anyone experienced anything like this? I will take any advice at all. From the chemo (she is so sad to lose her hair so she is doing cold caps) to success stories of stage 3. Anything at all to help us sleep at night. I appreciate you all and this community. Thank you guys so much for listening!

2019whatayear

Well good news is that other scans showed no distant spread- This really blows. I do hear more often than one would think that MOs or BSs tell the cancer patient that they probs won't need chemo. Then the patient is really thrown for a loop when it turns out they do need chemo, is your mom happy with her team? In your post it's a little confusing because you say oncologist in situtations where I would think the breast surgeon would say something not the oncologist- like do you mean the beast surgeon said from what they saw the lymph nodes would test negative? In any case, it's not great when they speculate.

My biopsy came back and said I didn't have cancer in the lymph node they checked then when they did surgery it had micromets and the cancer was just over 2 cm so I got bummed from biopsy staging 1A to 2B. I guess if you want to tell your mom, tons of people who have BC get a crummier diagnosis once the actual surgery arrives compared to what might have been a 'rosy' outlook at the initial biopsy. BUT she should take heart! She is "young" she is clearly in good overall health aside from this stupid cancer. She will be able to handle the chemo and the radiation like a champ. :-) I know there is a thread of long term Stage 3 members and always she should remember every body is different and Stage 1 doesn't mean you are home free and Stage 3 doesn't mean you are doomed.

I hope your mom has a good rest of the month. She is going to get that last little bit out on the 9th and before she knows it she'll be done with chemo and radiation!

I highly highly recommend that she goes for daily walks or other exercise. It does a mind good and it's one thing we can control as far as cancer goes.

DropfootCheeks

Yes! Sorry I am getting the oncologists and breast surgeons and plastic surgeons and all the specialists mixed. She is at Cedars here in Los Angeles and absolutely loves her team!! They are great. And Thank you so much for the response! Any bit of info helps an that truly gives me some peace of mind. Every day I check on her, she is doing walks or small hikes. We were definitely thrown for a loop, but she is incredibly healthy otherwise and I know she will get through this. Thank you again for the response!

2019whatayear

Okay yea that makes more sense then- in my opinion the Breast Surgeon should not have said the lymph nodes didn't look like they had cancer because the BS can't tell w/ their eyes and the biopsy already said there was 1 lymph node w/cancer so that was not cool in my non professional opinion. Nevertheless, guess what? Those nodes are long gone and cant' do anything else now! Ha! Your mom should enjoy the next couple weeks and then a little clean up on aisle 4 and then fun times in the oncology infusion department. To be honest, I think the chemo nurses are the best and most lovely people at the hospital and I found the onco infusion floor to be the most peaceful place.

Also w/this being the time of Covid and all- I had someone come with to each of my 4 A/C appointments- but honestly, that was more to give people who wanted to help something to do. So don't worry too much if you can't go sit with your mom during treatment - Weird as it might sound the chemo days are pretty relaxing when you are at the hospital or cancer center and the nurses are all very very helpful.

Nancy2581

Happened to me. I was told my tumor was 1.5cm and 4 doctors told me they were pretty sure no lymph nodes were involved. They said no chemo only lumpectomy and radiation. Yeah no. The tumor was almost double what they told me. It was 2.8cm. They took three lymph nodes and one was positive. That bought me my ticket to chemo and I was devastated. I also had LVI. Sheesh. Hair is a big deal to me as well. BUT I got through it and I am 6 years out now.

I am sorry your mom is going through this. I hated going to the doctor because each time I did it seemed something got worse. Your mom will get through this. She's lucky she has you and the family for support. Hang in there

Nancy

Francesca30

hi dropfoot,

I was initially diagnosed between stage 1B to Stage 2A during my ultrasound and mammogram. They discovered a 2cm lump and 1 suspicious lymph node. I had surgery before chemo. So after surgery, they found 13 lymph nodes all positive (out of 20) with lymphovascular invasion. I was in shock and in constant fear. Then I had 6 cycles of TAC chemo a month after surgery then 33 radiation , active treatment ended in September 2019. I opted for hysterectomy in November since I’m happy with the size of my family (I was 39) , and I want to start with femara (letrozole) instead of tamoxifen . I’ve had 3 petct scans and so far I’m still cancer free , I’m 16 months out. It’s really terrifying at first but your mom will be ok. This whole experience has really taught me how to be patient and Totake things one step at a time.

wrmbrownie

It's ok. I've heard many experiences like this. Even I was diagnosed with a lower diagnosis but turns out, they were wrong too. It's better to get it all out now with chemo than to have to worry. Yeah, it would have been nice to just have radiation but she caught it before it was all over and metastatic. I think doctors tell patients what they think but if they were to tell them everything and give all the "if's" then it'd really be much scarier. My chemo was done first and then surgery (still had bunches of positive lymphnodes.) The radiation killed the 'em all afterwards. It's great now. And new meds and studies are coming out all the time. She'll be fine.

beeline

DropfootCheeks, I'm so sorry about your mom, but the other posters are right, she will get through it. The same thing happened to me. I was told 1A, "tiny tumour," no sign of lymph nodes involvement. That I would only need surgery and maybe tamoxifen. They never even suggested it was a possibility that the surgical path could come back so different. That was the thing I found hardest. I was completely unprepared that it could turn out worse. I also ended up 3C and high risk. But I am coming up on 2 years out from surgery and feeling great so it is possible! Good luck to you and your family.

DropfootCheeks

Thank you so much for your response! I showed my mom your message and it definitely made her feel hopeful and she sends her thanks! She asked how was chemo for you since you both have similar diagnosis if you don’t mind me asking.

DropfootCheeks

Big heartfelt thank you to everyone who responded!! I showed my mom all of your messages and she said thank you thank you and how much better it made her feel. She wanted to ask how was chemo for everyone (her biggest worry) and she has now heard from a friend of hers that she will lose her fingernails and toe nails. Any advice on that for the ACT treatment? (4AC then 4 T) thanks everyone!

muska

DropFootCheeks, your Mom's story is something that happens quite often. Like the others have said, the most important thing is, they found nothing in other organs

As you can see from my profile, I am seven years post stage 3 diagnosis and still doing fine. This website was very helpful especially through the treatment period, encourage your mom to join.

All the best to your Mom

Editing to add, chemo nowadays is quite doable. I continued working through chemo, only took the treatment days off and had more rest. No nails were impacted. My regimen was not exactly what your Mom will have but very similar

2019whatayear

Chemo was not that bad. The A/C for me was like a hangover or like the flu if she has no experience with the foolishness of a hangover. There not so many foods that appeal to me so I ate whatever I pleased. But like small meals don't get too hungry. It's like when you are trying to avoid morning sickness, don't let yourself go too long w/o food and don't eat too much at a time. I didn't find the effects of the A/C to be cumulative, I had the same experience each time. The last time was the easiest b/c I knew it was the last time. Key things are 1. drink plenty of water, 2. go for walks even if you don't feel like it because once you go about 10 minutes the endorphins kick in and it lightens your mood. 3. don't wait to take anti nausea medication take it on schedule so you don't have a lapse in medication. I had the taxol that is for 12 weeks your mom I think has Taxene and so I can't speak to that. Overall Chemo was not that bad. It was do able and not nearly as bad as I thought it would be- like the way they make cancer treatment look on TV? pshhhhh not realistic. Thank goodness!

I had A/C treatment on Wed that day I would feel pretty good until about 3 hours post infusion. Then I'd feel like I had a hangover or the flu for the next couple days and then by Saturday I'd start feeling better and better each day and then on the following Wed I would work so Wed, Thurs and Friday then off for the weekend and then I'd be back at work on Monday and Tuesday and then on WED it was time for the next A/C treatment. I would get the neulesta shot on the Tuesday b/4 I returned to work. I took claratin everyday. Claratin can offset the Neulesta headache.

beeline

Chemo sucked for me, I won't lie, but it is time-limited so you know it will be over. I had terrible, terrible nausea with AC, but I am definitely an outlier there. Most of my cohort were fine. Apparently if you had bad morning sickness or migraine headaches (2 for 2) you're more likely to get hit with the nausea. That said, I did work through most of it, kept running at least once a week, and definitely had lots of good days mixed in with the bad. I highly recommend to your mom joining the board and then joining the "chemo starting x month 2020" when she knows when that will be. You get to go through it with a group of women experiencing similar things along the way. My group is still in touch which is really nice, too. Feel free to continue reaching out and asking questions!

lkc

I am sorry to hear of your Mom joining us . However as the others said having staging upped is pretty common. i do know hearing of this can be shocking.

Having no distant disease is very very good news.

I'm a stage IIICer and now in my 16 yr and wonderfully healthy.

Staging is done to determine appropriate treatment. With stage III aggressive therapy is recommended t and favorable prognosis is very likely. it's not pleasant , but all doable.

The important thing now is to go forward with realistic hope that all will be ok.

My very best for your mom to have a gentle ride

karen1956

Stage 3A - 14 years NED - bilat, chemo, radiation, oophorectomy and AIs. There are lots of stage 3 gals out there who are 14, 15 and more years NED. Wishing your mother all the best.

Lucca06

Think it's pretty common as they often can't really see micro mets i.e. very small amounts of cancer on the scans in the nodes on scans. I was also told one node at diagnosis from scans. I had 6 rounds of chemo before my mastectomy. My result from the mastectomy were a tumour way bigger than they originally estimated and 9 out of 18 nodes positive. One of my nurses (not very sensitively) said it was probably far more before treatment but the chemo had reduced it to 9?! Not exactly reassuring!! I am now 9 1/2 years from my stage 3 diagnosis (almost 9 from my mastectomy) really healthy and doing very well. This bit at the beginning is really tough as things seem to change all the time. The chemo isn't easy but it is doable, I had 2 kids of 1 & 3 at the time and almost no family support. The breast cancer nurses are amazing and they have so much they can give to help with the side effects if she is struggling. Good luck, there are loads more stories on this site like mine so lots of reasons to be hopeful.

pja2001

Hi there -

I had something similar happen to me. Initial testing showed a 3.2cm tumor and 3 lymph nodes involved. I did chemo before surgery. After surgery pathology came back with the tumor about that size but with 11 lymph nodes involved, raising my diagnosis from stage 2 to stage 3C. I freaked out, i'm not going to lie. My team decided to do add additional oral chemotherapy and a CD48 inhibitor to my treatment plan after radiation. I'm about 6 months since surgery,still cancer free, and doing well.

Chemo wasn't the most fun I've ever had but it also was not as bad as I thought it would be. I think the best thing you can do is be kind and patient to yourself and find the ways that help you cope through it. Everyone will react differently and everyone uses different things to cope. For me, eating constantly and walking as much as possible was the best medicine for me. I feel like one of the few people who gained weight on chemo, not lost it.

One other thing to check - when they raised my staging from 2 to 3C they counted 3 micromets on my lymph nodes. Turns out, for staging purposes, micromets don't count if you have macros. I figured that out myself by googling and reading the American Cancer Society website on breast cancer staging. When I brought this attention to my team they agreed and bumped me back down to stage 2. Ultimately it didn't change my treatment plan or the heightened risk of re-occurence I face, but mentally it made all the difference to me. Just a thought.

Stay strong!

Moderators

Dear pja2001,

Welcome to the BCO community. Thank you so much for reaching out to share your story with our members. We know that it will be very encouraging for others who are in similar situations. We hope that you will stay active here and both share and enjoy support of others. We look forward to having you here. Please let us know if we can be of help.

The Mods

beeline

Hi pja2001, do you have a link for micromets not counting towards staging purposes? I decided this for myself (haha) as it didn't make sense to me if they don't count micromets in 1 or 2 nodes as node-positive, but would love to see some back up for it Thanks!

JMouse

Hi, DropfootCheeks. Something somewhat similar happened to me. Told I was likely Stage 2 IDC going in to surgery, got bumped to 3C mostly due to number of cancerous lymph nodes. I can't write much at the moment, but I'll add more soon. You also can message me if you like. Hang in there.

[Edit] I'm back.

Like others have said, chemo and radiation were un-fun, but the worse ordeal was the emotional rollercoaster you all are now on. I remember reading on this site that the patient's job is to show up. Just keep showing up to treatment. That's it. That helped. Please tell your Mom that despair, anger, mourning (the future you thought you knew), anxiety .... all of these may come, but she shouldn't feel like she is doing any of this wrong.

Your mom has you, someone who clearly loves her and wants to help. Even just your willingness to help will mean a lot to her. (Seriously. I have a young niece who decided it was her job to send me loads of funny dog memes. I am so grateful still.)

When your Mom walks out of that final radiation, some of the weight will lift. I'm a little over a year out from that, and I feel emotionally so much more like my old self. I think many here would say the same.

The one 3C specific advice I can give is: I recommend you DON'T try to look up scientific articles specifically about BC patients with high counts of cancerous nodes. We are historically a statistically small group of breast cancer patients, so research articles are few and scattered over decades. Unless someone in your circle has the background, the articles will only raise more questions and so, more fears.

There is no stage, no version of breast cancer that has 100% lifetime cure guarantee. High risk 3C is terrifying, I know, but we get the fiercest treatment. There are amazing users on this site who have had similar diagnoses and are still here many years later, commenting and helping others. Hang in there, both of you. Just keep showing up, cry your eyes out, laugh when you can, and you'll make it through.

YATCOMW

I am stage IIIC......I am currently out over 16 years.

It is a humbling diagnosis but can certainly be beat.

Hang in there.......it will get better with time.

Jacqueline