Tired, worried, not sure if chemo is the right choice

for_my_mom1

Hi All,

First time posting here, accidentally posted in LCIS, tried reposting it here but got banned, should have read the community guidelines more closely. My mom was recently diagnosed with breast cancer and I luckily stumbled on this great forum- she isn't the most tech savvy so I figured I would make an account on her behalf. It's been a rough journey so far, but I'm sure almost all of you ladies on here felt the same way. She was diagnosed with BC in Jan 2018, initially things looked pretty good, ILC, 8mm on US, ER/PR+, HER2- found on routine screening. The breast surgeon was very reassuring and my mom opted for a lumpectomy with subsequent radiation therapy. Unfortunately the cancer was larger than initially thought, 2.5cm was excised, margins were still positive and 5mm mets were found in the single sentinel lymph node biopsied. Breast surgeon wants my mom to see a med onc for chemo before coming back in for a mastectomy followed by radiation of chest wall, axilla and lymph nodes with subsequent hormonal therapy. They say that the cancer is still stage 2, but given the margins and the neoadjuvant chemo I suspect it'll end up being stage 3 at least.

I'm a medical student a few years into my training so I've been frantically reading papers and guidelines to try to figure out if my mom's been receiving the best care possible. I'm concerned that neoadjuvant chemo is being suggested as I haven't seen any strong evidence supporting its use in locally advanced ILC. My worry is that my mom will have to suffer through chemo for nothing, with her mastectomy and hormonal therapy being delayed as a result of it. Maybe some of you on these forums would be able to share your personal experiences with ILC and chemo?

The thought of chemo is terrifying, I've read about all these side effects and I'm so scared that my beautiful, vibrant mom won't come out the other side the same person. I heard about radiation induced brachial plexus neuropathy recently and found out it's associated with radiation of the lymph nodes, with increased risk associated with concomitant chemotherapy. The thought of my mom developing this has been keeping me up at night and it's been making me feel like chemo is an increasingly bad idea. I'm in this sort of limbo where I have a better understanding of the associated medicine and the literature, but definitely don't know anywhere near enough to be deciding treatment. I haven't talked to my mom about any of this as I don't want to scare her, but I've seen first hand patients falling through the cracks and I don't want my mom to suffer because an oncologist isn't on top of the most current literature.

I'm sorry for the long post, but I'm not sure where else to turn to. I can't sleep at night and I've been falling behind in class- every time I think of all the emotional and physical pain my mom is going to have to go through I feel like vomiting. I go to med school in a different city and I've only been able to get home about once a month. Wish there was more I could do to support her.

Icietla

Welcome to BCO. I am so sorry about your Mom's illness and your anxiety about her treatment.

I have not had Chemotherapy, nor Radiation Treatment. From imaging it appeared that my tumor was .8 cm. Its actual size (configured as grown) would not be determined because the part excised in my first surgery collapsed. The rest was removed in my next surgery.

>>I'm so scared that my beautiful, vibrant mom won't come out the other side the same person.<<

She will never be just as she was before diagnosis. It changes all of us. Even when her active treatment has been completed, her cancer experience will continue. It is something always carried in one's mind, bearing more heavily or less heavily on one's mind.

Dear, you are catastrophizing. Your Mom has not had the treatments of which you are so fearful. She has not had and may not have the treatment effects of which you are so fearful. Remind yourself of these (known) things whenever your mind tries to turn you to catastrophizing. You need to get enough sleep and concentrate on your studies. Count prime numbers to get yourself to sleep.

I will be back later.

Chiarara

One thing I learnt from my experience of BC- don’t spend lots and lots of time agonising about how you will cope (or not) with some aspect of treatment. I learnt that many of my expectations about how things would go were wrong- for instance, I found the lumpectomy more difficult and painful than the mastectomy (which I elected to have, after they could not get clear margins, to try to avoid radiation). Of course, be informed, but try to keep an open mind. Yes, it may not go well, but it is also possible that things will go OK..

Meow13

I would advise getting an oncodx test on her tumor. Also you may want to get second opinions, the breast surgeon is good at surgery a good medical oncologist is better to advise on treatment.

Icietla

>>Breast surgeon wants my mom to see a med onc for chemo before coming back in for a mastectomy followed by radiation of chest wall [...]<<

I am guessing from this that from her surgery, tumor tissue was found to be or is expected of be in proximity to her chest wall. If that is the case (?), I would expect that chemotherapy would be recommended to precede her next surgery; and also that radiation treatment of that area would be recommended to follow her surgery.

Here is a recent thread from our ILC section here. The discussion touches on some ILC characteristics that your Mom may want to take into account in her choice of mastectomy options.

https://community.breastcancer.org/forum/71/topics/862161?page=1

Momine

I had neo-adjuvant chemo for locally advanced BC, although I am not quite sure how you have decided that your mother's cancer is locally advanced. To be locally advanced, there has to be chest wall or skin involvement, which it doesn't sound like your mother has. However, if she does have chest wall involvement, the neo-adjuvant chemo is recommended in order to shrink the cancer away from the chest wall, and thus allowing for clean margins at surgery.

However, she has the lymph node, and probably the doctor's reasoning is similar to my doctor's reasoning. A mastectomy will get rid of the primary cancer, but it will not stop metastatic spread through lymph and vascular infiltration. Since she has already had surgery, doing more surgery before chemo could fatally delay the chemo. Most likely the doctor wants to stop the cancer in its tracks before operating further.

Yes, chemo and radiation come with side effects. One of those side effects is surviving. If you have doubts about the treatment plan, get a second opinion. A second opinion is always a good idea anyway. Also, with the current doc, discuss it. Ask him/her what the reasoning is. It is certainly important to be on the same page.

My mother also went through chemo (ovarian cancer) at age 69. She joined an exercise program during her treatment, and was in the best shape of her life by the time she finished. My aunt went through bouts of chemo, at age 74 and again at age 75. She is also physically active, walking and biking everywhere. They did both have some side effects, but those can be managed, and it didn't seem to slow them down much.

Anonymous

You didn't share how old your mom was or if she's in relatively good health, which is important to consider in light of chemo. There are all kinds of ways to protect against side effects, and easy things you can do, like exercising moderately during chemo (seems counter-intuitive, but it helps--you can find white papers about it).

Meow13 suggested the oncotype test and I agree that if you can get the test done, it will arm you with more information about the benefits of chemo for your mom.

The most difficult thing is being forced to wait till the experts and all those different moving parts (lab results, members of medical team) come together. Try to be patient; you and mom are in panic mode as we all were in the beginning: e.g get this stuff out of me asap! But truly, waiting a little bit longer for the quantifiable information is going to help you and your mom make the best decision for her kind of c, with the help of your medical team. If you can get a second opinion, it goes a long way towards reassuring yourself that you have the information you need to make informed decisions.

I think assuming her BC is a particular stage without the pathology report will only cause unsupported worry, since you really don't know yet.

I had surgery well after chemo. Lumpectomy, chemo, radiation, then BMX and reconstruction much later. I don't think I'd want to try to recover from surgery and then go right into chemo, because of immune system compromises. Does she really need a BMX? I chose that because ILC has a higher tendency to be multi-focal, and hard to detect on scans, but many of us have chosen lumpectomy and radiation instead of a full-on BMX.

So sorry you have to join us here, but your mom is going to be okay. ILC is a bit of a different animal than IDC or other BC subtypes, but believe it or not it has some good features too, one seeming to be a bit less aggressive than other types. We are here to help you find answers, so keep posting when you feel like it.

Hugs

Claire in AZ

AgathaNYC

Dear For_my_mom1: Sending support to you and you mother through the cyber cloud!

Not all responses to neo-adjuvant chemo is the same, but I can share my experience. My tumor was a mix of ILC and IDC. It measured almost 7+ cm, either invading or pressing into the pectoral muscle. After neo-adjuvant chemo it is not palpable AT ALL. Post-chemo imaging shows that there is no mass, but residual asymmetry in the former area of the lump that has receded from the muscle. I'll be having a lumpectomy next week, followed by rads.

Chemo wasn't pleasant, but I took strength in knowing that any cancer cells circulating in my body were being dealt with by the chemo ASAP. Mastectomy and radiation don't do that, chemo does. Because I had such good measurable results with my tumor I could tell it was working - that reassurance was worth gold to me.

I can guarantee you that your mother does not want you losing sleep or for your studies to suffer over her condition. Maybe take her to get a second opinion; that will either reassure you both that her doctors are on the right track or give you a treatment plan you are more confident in.

Good luck with everything!

Okkate75

I'm doing chemo right now, and it isn't anything like I was expecting from the movies. Is it hard? Some days, yes. Is it changing me? Of course--a cancer diagnosis changes you. What does your mom think about these choices? What are her fears about chemotherapy? This is her diagnosis and these are her treatment plans, and I hope she can get her questions answered by her care team. Chemo is doable--all of this is. She can do it! And so can you.

lightseeker

Hi,

I am a mom of two twenty-somethings. The best part of my entire cancer ordeal was the fact that both of my kids were out of the house, making their way in this world. The older one is a successful computer programmer at a fortune 100 company (employed right out of college). The baby is in her last semester on her way to a degree in Education; she lives with her lovely boyfriend. Knowing they are ok makes this easier on me. I was able to focus on myself and I needed to. I am sad that my hubby has to bear witness to this fuck fest but, he has proven to be a wonderful hero, when I needed it most 🙂

The greatest gift you can give your mom is to take flight; don't get grounded. Focus on school and be successful. When you visit once a month, try to laugh and have fun. Tell her all about your trials and tribulations - it will take her mind off cancer. If she does chemo, she will be tired but, she will always be awake enough for ice cream or her favorite treat 🙂

Yes, get a second opinion but, remember, ultimately, she decides what's in her best interest.

Eve

MmeJ

And as a medical student a few years into your training, surely you know how to research treatment options and read published papers in reputable journals better than just about any of us on this forum, and have access to information from all kinds of specialists within your training network.

nash

for-my-mom--I understand a bit how you feel. My late Stage IV bc mom's cancer was harder on me than my own. But please don't get too worked up to the point where it's affecting your health and your studies.

I've had pleomorphic ILC 3x now over a span of 11 years. PILC is more aggressive than classic ILC, plus I was first diagnosed at age 38, so I don't know how much my experience will translate to your mom's. I did adjuvant chemo following lump/rads in 2007 (neg nodes, oncotype 18), had a local recurrence in 2015 (while on Tamoxifen. Refused more chemo, couldn't tolerate OS/AI. Still neg nodes), now there's a new primary 8cm tumor with multiple involved nodes on the contralateral side as of last month.

For this most recent tumor, I am doing neoadjuvant chemo. My onc said neoadjuvant OS/AI wouldn't be strong enough given how aggressively this tumor is acting. We will do a breast MRI after cycle 3 to see if the TCx6 is working. So the jury is out on the effectiveness of neoadjuvant chemo for me until that MRI is done. Again, I have the pleomorphic variety, which is more aggressive than classic ILC, have already flunked Tamoxifen, and my tumor is not acting the way it should on paper according to my onc (ER/PR+, HER2-, but acting more like HER2+ or triple neg).

Pretty much any/all bc treatment is damaging in one way or another. There's no way around that. One has to do what one has to do. The most important piece of the puzzle for you mom, IMO, is the Oncotype DX. If she has a very low score, then chemo is probably not warranted, whether it be neoadjuvant or adjuvant.

FaithAndTrust

please be reassured CHEMO works immediately to stop any spread...please read my post from a couple of days ago ...it can and does do a great job for many on here..it is way more doable than you can imagine and your Mum will get to see if and how well it works which will hopefully give her peace of mind.

Wishing your Mom the very best outcomes whatever her and her team decide to do...

wallan

I had stage 3 BC 14 years ago with a 7 cm tumor and 2 positive lymph nodes. I had chemo and radiation and mastectomy and lymph nodes out. I was in a clinical trial, so the chemo was strong.

I am fine now. NED. I don't have lymphedema, or heart issues, and I actually just had reconstruction even with my radiated skin and it turned out beautifully. So I know I healed. Even going thru the chemo was not that bad. Nor the radiation.

I have a PhD in physiology/biochemistry and in my job I talk with cancer researchers, including breast cancer researchers all the time. I was undergoing my PhD actually when I got breast cancer 14 years ago. I too researched too death and I understood the bad stuff that can happen pretty well. It just scared me. Sometimes you can know too much and project that on to the current situation and make it much worse than it is. Your mom needs support and kindness and guidance and reassurance. It will help both of you if you give this and even accompany her to appointments etc. I think scary thoughts and projections are bad for both of you.

I am so sorry your mom is facing this, (and you too) but just remember that the odds are with her.

Hugs to you.

wallan

for_my_mom1

Wow, I didn't get a chance to check this forum until now and I'm blown away by the amount of compassion and support from you wonderful souls. Reading through your comments has lifted a huge weight from my shoulders and this is the best I've felt for a while now. I passed along the well wishes and positive stories to my mom and it seems like it's cheered her up as well.

Icietla, thank you for your measured response, I think you're right in that I will need to accept that my mom will not come out of the therapy unchanged. Thank you for the link to the other thread, it is really reassuring to know that other women have gone through similar treatments and come out the other side for the better. I'm going to try and stay cautiously optimistic and continue to look towards whatever small positives there are. I think this experience has helped my whole family stop and appreciate each other more; sometimes you forget that your loved ones won't be around forever, and this is a poignant wake up call.

Chiarara, that is sound advice. I know that my mind is going to worst case scenarios which aren't likely, but sometimes you get into a negative spiral and it's hard to get out. Your words of encouragement, along with the responses of others in this thread, have been immensely helpful, thank you.

Meow13, I live in Canada, and I think the oncotest is less commonly used here. I've read about it, but I don't think I've appreciated how valuable it can be as a treatment evaluation tool. I was under the impression that it was mostly used for node negative disease, but I will contact our nurse navigator and ask about it. I agree with the second opinion, I've been considering asking for one, but with the way our public health care system is I was worried it would just cause a further delay in treatment of a week or two.

Momine, thank you for your response. I called it locally advanced as I was under the impression that any stage III cancer could be considered as such- I very well may be mistaken about this. I know my mom is not yet officially stage III, but given the margins I have a gut feeling that the total tumor size will exceed 5cm. You're absolutely right, what you said is very similar to what the breast surgeon told us, I think I have just been having a hard time accepting it and needed to hear it from someone else as well. Thank you for sharing your story and that of your aunt and mother, I'm very glad to hear that they tolerated things so well. I hear so much about the bad parts of chemo that I sometimes forget about all the people who have a far better go of things.

I have to run now, but I will try to respond to everyone either tonight or later tomorrow. Thank you all again, your words and well wishes are so appreciated.

Momine

For my mom1, No, stage 3A is counted as early stage, not locally advanced. I did have locally advanced BC, because there was skin involvement. That means that I am classified 3B. I am, by the way, almost 7 years out from diagnosis. Also, ILC tumors are often large, and it doesn't seem to mean that much by itself. The treatment is not easy, and it would be silly to try to kid anyone that it is. At the same time, if you go into it with a bit of determination and you are prepared to take good care of yourself, it really doesn't have to be the horror show that so many people imagine. Side effects can be managed if you keep good communication with your doc, and besides they are not forever. I never puked from FEC, thanks to careful post-infusion meds, and when I had some bad inflammation with taxotere, we adjusted the post-meds to deal with it. Towards the end I was far more tired than normal. That meant I often went to bed with a book or stupid TV shows around 6 in the afternoon during the last months. But that is not really the end of the world in the greater scheme of things.

I focused on enjoying myself all through treatment (in the last months making sure to schedule something enjoyable for before the afternoon fatigue hit). I ate well, I saw good friends, I exercised, hung out with my dogs, wore pretty clothes, read entertaining books, watched funny movies. I don't believe even a little bit that you can vanquish cancer with positive attitude, but keeping a sense of humor and not forgetting to appreciate the good things in life can certainly make the time you spend on earth a lot more enjoyable, even if you are going through cancer treatment. I would see these families in the chemo rooms, where everybody acted like they were at the undertaker. That is neither necessary, nor helpful.

I finished rads in early February, had an ooph in March and started on an AI on April 1. In early April I remember being in NYC for a visit and walking a million miles a day. By May I was in the gym lifting weights 3X a week. It was a challenge at first, but it really didn't take that long for me to regain energy and strength. I have kept up the exercise and a good diet ever since, have a BMI of 19, and on most days I feel better than I did before the DX.

By the way, my mom rode her bike to and from chemo.

Anonymous

Momine, thank you for reminding me to share that I hiked for an hour after weekly Taxol infusions. At one point my white count was low enough that my oncologist had me delay infusion by a week and I felt so good and was so upset about it that I went right out and hiked 3 miles (I got tx in Sedona).

I remember that I felt pretty low (but not actual puking horrible) the night after dose-dense AC chemo infusions and 2 days afterward. By the 3rd day I was nearly back to my old self. I worked all the way through chemo, never took a sick day, and drove myself to rads treatments. Work was my haven; it helped me keep my mind off my fears about c and focus on something else.

Point is, the old stories about how awful chemo is (I'm guessing from the 70s/80s, when we didn't have so many ways or had the knowledge we have now to alleviate many side effects) aren't true. I was terrified about having to have chemo when I found out it was rx'd. I found that it wasn't nearly as bad as I feared. Not even a little bit. Even losing my hair was survivable; I liked my super short hair so much when it grew in I kept it that way for 3 years.

Claire in AZ