Posted on: May 29, 2019 02:49AM
New here, and excited to find this resource (researching the heck out of things and reading different real-world experiences always help make overwhelming situations feel manageable to me). I'm 43, and was just recently diagnosed with ER+ PgR+ HERS2+ IDC in my breast that's already spread to lymph nodes. I had a mammography and ultrasound that showed a large suspicious BIRADS 5 mass (5.9cm) and "at least multiple" swollen lymph nodes (largest 2.1cm), and had an ultrasound-guided core biopsy in my breast and one axillary node that confirmed cancer in both. The pathology report lists all the same dimensions as my original ultrasound EXCEPT lists the largest dimension of my breast tumor at 4.6cm rather than 5.9 (not sure if a mistake was made? Or the second ultrasound at the biopsy suddenly found "changed" dimensions?)
At any rate, this is where I'm at, currently. My primary care has ordered an MRI that I'm trying to schedule... it sounds like maybe this isn't the standard next step for most people? She understands that I have a LOT of fear and reservations about intense chemical treatments like chemo, and that I want to gather as MUCH info as I can before committing to treatments, and I want to be as involved as possible in the decision making. I know that the next step is connecting with an oncologist, but... what kind? Surgical Oncologist? Medical Oncologist? Both? Does it matter? My insurance said I can see many specialists on a team but I need to designate a "lead" Oncologist that functions as the primary, and who can make subsequent referrals so the insurance will cover them.
As far as where I'm at mentally/ emotionally... don't read on if you're trying to surround yourself with nothing but positivity.
I'm not at all scared of death itself, and consider myself pretty strong and capable in many ways. But I've already been suffering from pretty dark depression the past 2 1/2 years, and I've always had moderate medical procedure anxiety (totally fine if I have some accident and bleed everywhere, but almost pass out for even minor blood draws, type thing). So, I'm definitely dreading basically every aspect of treatment I know they'll want me to do, esp chemo. To make matters worse, the past 6 months I have been heavily supporting a friend who just entered hospice for stage IV breast cancer, and her process has been excruciating to bear witness to (factory farm cancer center treatments with false hopes and pasted-on positivity, as she went down hard and fast, in total denial, while it spread like wildfire to her brain and beyond, completely destroying her mentally). I feel INCREDIBLY jaded as a result of this experience, as well as having had multiple other friends die of cancer in the past 10 years. Add to this the fact that I'm good at being a caretaker and terrible at letting people take care of me, and I dread the possibility of being a burden and not being able so support myself (financially and otherwise) as I go through this process. I was initially rejecting the idea of just about everything besides surgery, but am trying to stay open-minded and find beauty in the world and reasons to fight this, and be open to at least TRYING things. But I have SO many reservations, and it's been very hard to figure out how to approach treatment from where I'm at mentally/ emotionally.
It's been helpful reading these forums to get a sense of what to potentially expect, and am hoping to get some practical advice on what to do next, and maybe some non-judgemental words of wisdom from someone who can empathize with where I'm coming from? I apologize in advance to anyone who may have been brought down by what I said, I know many people need to keep a very upbeat attitude to go through this.
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May 29, 2019 05:59AM Salamandra wrote:
Can you contact an NCI cancer center near you? I called their intake line, they gave me directions to send over all my test results, and then they called me to schedule me with the oncologist they thought was appropriate. For me it was starting with surgical oncologist, but with triple positive they may want you to start with medical oncologist.
It sounds like you've been through a LOT and seen too much. It can be hard to shift focus to yourself after so many years of caregiving.
I think everyone handles things differently. Your friend that was in denial - that was her way of handling it. It's painful for us to watch, but by definition it was the best choice for her. You're going to handle it your own way. I will say that I think it's worth listening to input from doctors, including second opinions if you you don't 'gel' with the first provider. The power always remains with you and you can step off the treatment train whenever you want.
Another advantage of an NCI center is that they may have a psychiatrist on staff too. I also have treated depression and it's been super helpful to me to have the care from someone with deep knowledge and experience of cancer and its impact on both pharmacology and mental state.
May 29, 2019 06:15AM Newfromny wrote:
I too am triple positive had a 5 cm mass with a positive lymph node and was scared about treatment. After chemo , TCHP, I had a double mastectomy and had acomplete response, including in the lymph nodes. I’m undergoing radiation now and it’s not too bad. I’m still scared I don’t think that will go away, but you can do this.
May 29, 2019 07:16AM dtad wrote:
I'm so sorry you are going through this, especially at such a young age. The beginning is the absolute worst part of this journey. I think most would agree. My best advice is to get treated at a major university teaching hospital. IMO is that a MRI would be the next step so you know exactly what you are dealing with. I also agree that being triple positive gives you more treatment options. Remember to address your history of depression in your treatment plan. Try to find others that have been in your situation like Newfromny. They can relate specifically to your diagnosis. Best of luck to you. Please keep us posted.
May 29, 2019 08:13AM Mymomsgirl wrote:
I'm so sorry you find yourself here, but there is a lot of great information people have shared. Since you are premenopausal MRI is the next step. I would also echo what others are saying and look to go to a top notch cancer facility. I could've stayed close, but when the leading facility in your state is only an hour and 20 minutes away you make the drive. I think it is important to have a team who their primary focus is breast cancer. Since you are triple positive most likely you would start with a MO for chemo and the follow that up with surgery. Good luck to you!
May 29, 2019 08:49AM mom2bunky wrote:
You can do this. You'll find strength you didn't realize you have. Also, YOU control which treatments you agree to. This is a great place to get educated so you can make informed choices.
The MRI was the next logical step for me after the mammo, ultrasound, and biopsy. So that's okay. It's smart to do it to ensure that there is nothing else going on, and then plan your treatment accordingly. For what it's worth, I'd never been sick or had surgery, or spent any time in a hospital (other than 36 hours to give birth). So this terrified me because everything is new and scary. It's okay. If I did it, you can. The breast MRI was terrifying to me because I'm claustrophobic. But you know what? It actually wasn't so bad. You're on your stomach, which helps tremendously. It'll be okay.
I'm sorry you're here, I'm sorry I'm here, I'm sorry we all have to be here. But we're here for you.
May 29, 2019 09:14AM - edited May 29, 2019 09:14AM by Fairydragonfly
Our stories have many similarities. Though my cancer was caught early (stage 1), I just found out it is highly aggressive (grade 3) and my estrogen receptors are weak which makes it similar to triple negative. I'm apprehensive about chemo (understatement) but have been told that is the recommended next step to reduce my risk of recurrence by half. I'm afraid of medical/dental procedures, needing to take anxiety pills just to go to the dentist. I lost both my parents to cancer last year, and was only surprised by my age at diagnosis (I'm 43) as I fully expected to get cancer based on my family history. I live alone with no family and my support system is friends and colleagues. I have been battling the depression beast since my 20's.
That said, even with all my fears, I plan on doing whatever it takes to give myself the best possible chance to live as long as possible. I found out from my oncologist that I need to go off of one of my antidepressants in order to take the hormone therapy. Scares me, knowing how difficult things can get when my medication isn't working.
I believe that you are stronger than you can possibly imagine. Educate yourself as much as you can. I live in Canada so don't know how things work in the US, but if your anxiety and depression are concerning to you - look into psychosocial oncology. They will help you navigate the system and make sure you have access to the appropriate resources.
As an independent young woman who is used to taking care of others, this is the time to let people help you. While letting go and asking for help may be difficult, keep in mind that those around you want to help and feel useful in some way. So if they offer, say yes and tell them what you need.
And don't hesitate to reach out to people on this board. While everyone is going through something different, they still have an understanding of what it is like to move through these stages.
May 29, 2019 09:46AM hapa wrote:
I was diagnosed at 41 with a 6cm tumor by ultrasound, which on MRI turned out to be a 3.3cm tumor, but was multifocal (I had three or four satelite tumors and a "area of non-mass enhancement") and surrounded by "fibrotic tissue", which I guess threw the radiologist off. I was also triple positive (eventually, it's a long story) and had spread to multiple lymph nodes, and you will want to see a medical oncologist first to get chemo before surgery. If you have a good response to chemo, they may be able to do a lumpectomy instead of a mastectomy and/or a sentinel lymph node biopsy instead of a full axillary node dissection. Unfortunately in my case the chemo didn't downgrade my surgery at all, but what cancer was left was small, much less dense, and low grade cancer cells.
I will say that the treatment wasn't NEARLY as difficult as I thought it would be, physically anyway. Mentally it was a long, hard road. I'm not a very emotional or dramatic person, but I was basically a zombie at work the whole way through chemo - just mentally not there - even though I did manage to get my work done. Like you, I'm a very independent person and not used to people taking care of me. But no worries there because my husband just played video games through the whole thing, lol. I was still able to do things for myself through all the treatments and worked through a lot of it. I probably could have worked through more of it but I had leave available so I took it. I think for most of us, depression isn't a huge issue during treatment because you're in fight or flight mode and trying to get through, not to mention you get tons of drugs, lol. After treatment or between treatments is when people seem to get really down.
You should join us on the triple positive thread. Those women have been really good support for me through all of this.
Oh, and I concur that you should go to an NCI cancer center, and if that's not possible, go to a university teaching hospital. It makes things much less stressful to have all your providers under one umbrella and able to easily communicate with one another.
May 31, 2019 01:24AM HeartShapedBox wrote:
Wow, thank you everyone for all the prompt and thoughtful replies!
I am scheduled for an MRI in the morning, and luckily I'm not nervous about that part. Nor am I nervous at the prospect of radiation (if that's on the agenda), and I could grit my teeth and handle the menopause symptoms of hormonal therapies. It's more the "invasive" cutting & needle-parts, and the chemical poison parts (and the prospect of bad side effects -another phobia) that have me scared and gun-shy about treatment. My insurance (thank god) is going to cover all of this, but ONLY if I go to my local cancer institute. Although it's NOT going to be as good as the huge and top-rated NCI affiliate that's hours away, it IS also a research center affiliated with the US Oncology Network, so it does offer clinical trials/ cutting edge treatments (not that my insurance would necessarily cover them), and has a selection of oncologists to choose from. So, on to choosing one, and finding out more.
May 31, 2019 02:01AM HeartShapedBox wrote:
Thank you mom2bunky for the encouraging words, and reminding me that I'M ultimately in control of my choices, in this situation that's making me feel very powerless and not in my strength. The only way I can even imagine even trying some aspects is in a "one day at a time" approach.
Fairydragonfly, thank you for sharing your story (and kindness). I'm SO sorry that you don't have support living at home with you (I'm very lucky in that sense), and I'm glad you have good friends who have risen to the occasion! I am trying to open up to my friends and family, and "give them the opportunity to be supportive" (as one friend put it). It will be VERY hard for me not just say "I'm fine" when they offer, but I also feel like that's such an ungrateful place to operate from. I hope to get some positive growth out of this experience, and definitely want to learn as much as I can.
The recommendations for psychological therapy while going through this are good reminders- my options via insurance are limited, but if there's one area that might be worth spending out of pocket, I think the one that will help me (hopefully) want to stay on the planet in the first place, would be a worthwhile expense.
Hapa, I hadn't even considered (or realized?) that my breast mass might include multiple tumors or other fibrotic stuff, hmm. I hope the MRI helps clarify this. I think if I could psychologically put myself if a "fighting" mode, I could maybe push myself through it more. Maybe drugs would help? (Lol. Any recommendations?) But chemo is the part I'm MOST sketched out about, I don't think I could jump in the deep end with it, at least not right now. So did you do chemo ONLY before surgery, or did you have to do more chemo after, if chemo didn't shrink anything? I'm still learning how this all works.
I will definitely check out the triple-positive thread! It's been SUPER helpful to hear from people in a similar boat, both in terms of diagnosis and in terms of the psychological battles. Thank you all again.
May 31, 2019 03:21AM Fairydragonfly wrote:
You got this. I found out that chemo is highly recommended in my case and totally get the fears surrounding it. I sincerely believe that we're stronger and braver than we ever thought possible. Which means doing what is necessary in spite of our fears.
Plus you have this community to help you through it.
May 31, 2019 10:07AM Okkate75 wrote:
I'm so sorry you are going through this! Chemo is a really important tool in the cancer fighting toolbox for a lot of us. I was terrified of it, but I did it, and though it was only a year ago, it feels like it was in the distant past. A lot of things that feel impossible at the beginning of the cancer road turn out to be very possible. Good luck getting news and making decisions. It's hard stuff!
May 31, 2019 10:08AM - edited May 31, 2019 10:13AM by alto
Meds might be a good idea, to take the edge off.
I took Ativan to help with the anxiety after my diagnosis. Not all the time, just when I could tell my body was running 100 mph, or I couldn't sleep.
Later, I took an SSRI to help me cope with all the changes in my life.
While I was going through peak periods of stress, I also listened to books on meditation and mindfulness. Jon Kabat Zinn has a good one called Full Catastrophe Living that is very calming (was written for people living with chronic or life-threatening illness), as well as one called Mindfulness Meditation for Pain. Max Heighstein's recording Releasing Fear had some useful techniques - such as picking a person (I chose my great grandmother who passed away the year I was born, but who I looked like and who I heard stories about) whose energy serves as a model or guide, and who you can commune with in spirit for strength and support.
Taking a walk in nature also helped most of the time. I'm really trying to get back into exercise for so many reasons.
As Okkate75 says, some of those tough experiences fade away in time. I was so scared of the surgery, and recovery was mentally tough (agh-can't do stuff I wanna do!), but now I don't remember those days in much detail - just have an appreciation for all the things I can do now that I'm healing from surgery. Sometimes your body can surprise you by how strong it is, and how well it does its job.
May 31, 2019 03:04PM hapa wrote:
HSB: I had six rounds of chemo + herceptin and perjeta before surgery (referred to as "TCHP") and eleven more rounds of just herceptin after surgery. That is all standard of care for triple positive. Because I was young, had so much cancer at dx, and still had three positive nodes, I was recommended for comprehensive radiation (breast, chest wall, lymph nodes). After radiation, I started on hormone therapy, which is also standard of care for triple positive. Today, I started Nerlynx, which is sometimes recommended to women with residual cancer after TCHP. Nerlynx is pills.
It is my personal opinion that fear of chemo is totally overblown. I know there are people who have bad reactions to chemo, but they are rare. For me, and for most women on my chemo thread, it was not like you see in the movies where folks are shuffling around on the verge of death the whole time. I would say that I felt mildly crappy for the first week after my infusions, not quite right for the second week, and fine the third week. I was functional almost the whole time. I started getting tired and easily winded toward the end, but worked and worked out throughout. I was given ativan up front for anxiety and persistent nausea but only took it once because it totally knocked me out. Other people have a better reaction to the ativan. Hiking and trail running were my drugs of choice for the anxiety. The six weeks after BMX where I couldn't work out were really tough on me. I think doing well on chemo is really dependent on getting exercise and maintaining good nutrition, and both of those are going to be dependent on managing any nausea, vomiting, diarrhea, or constipation that comes along. You will get a feel for how the infusions affect you after your first infusion. Take note of when/if you get any of these issues and how you resolve them. Then for the rest of your infusions, be proactive about managing the side effects; take the anti-emetics before you feel nauseous, take the immodium before you get diarrhea, etc. Also, join the monthly thread for people starting chemo. The women on this board, in the Triple Positive thread and in my monthly chemo thread, were more helpful than the oncology nurses for managing my side effects. They also made me feel better whenever I got rare side effects; the chemo nurses may have never heard of such a thing, but someone here has experienced it, which will make you feel a lot better. I was always worried that every side effect, especially the ones that I wasn't told about, were a sign of imminent death. But knowing other people had them and didn't die from it made me a lot more relaxed, lol!
Also, I will give you this last bit of advice: if you're feeling overwhelmed by the idea of going to six rounds of chemo, just make a deal with yourself to go to the first round. If it's horrible, you can just not go back. I told myself before every round that I just had to go to this one round, and if after that I thought I couldn't take any more, I could just not go back. I made it through all my rounds, with no delays or decrease in dosages. Just put one foot in front of the other until you get through this mess.
Jun 4, 2019 12:16PM kaylie57410 wrote:
Hi to you -felt compelled to reply-yes this is all so scary- I was dx stage 2 on routine annual mammo 2 years ago this month and had lumpectomy-sentinel bx--2/2 positive nodes, chemo- 4 TC infusions -did cold capping with Penguin cold caps and saved 80 percent of my hair , had radiation treatments times 33 and am now in second year of Femara/letrozole, and doing fine -it does get better and life does get back to mostly normal--
the fear never goes away completely but does diminish over time--As to what to do now I have 2 important steps for you-- first find a Cancer Center near you that is academic focused- they will have a comprehensive breast cancer department where you will be cared for by a whole team working together for you.. I work at my hospital where I got my care and I remember at my first appointment I felt like all had wrapped their arms around me and assured me they would get me thru this--and they did- a day-a week- a month at a time--Your team will involve a nurse coordinator, a breast surgeon, an oncologist,nutritionist, nurses, social worker, radiologist and techs--this step is crucial to your successful navigating thru your journey-
Secondly - start educating yourself about breast cancer- the cancer center will give you educational materials to help you learn and understand the mountain of information coming at you-- the more you know and understand- the less afraid you will be. this web site you are on now became my lifeline during it all-this is a legitimate ,wonderful site to help you gain the info you need. I caution you be wary of many sites that do not put out accurate info -be wary of those that encourage alternative / not scientifically proven treatments instead of conventional proven medical treatments- your life is at stake here- put your faith and trust in the experts and do not think you know more that they do--you dont!--complementary treatments--like massage,acupuncture, meditation,eating well do not treat cancer but can help you feel better emotionally and physically thru the process.
do keep us all posted as you begin this scary, but very manageable journey you never wanted to go on--many hugs--you can do this-Kaylie
Jun 4, 2019 07:36PM msphil wrote:
hello sweetie let me share my story I was 42yrs old when found lump we were planning our 2nd marriages at the time my true Love in my life and now this. I don't want to die is what I told him and family at this happy time in my life. Was this really happening? Well it was I had my cry and then determined to fight the good fight for my life. Was referred by American cancer society for oncologist and rads oncologist. Had 3 no chemo before and after Lmast(cytoxin adriamycin 5fu) surgery Lmast with reconstruction had one filling in implant it hardened was rush to E R by fiancee. High fever 104. It was removed body rejected it. Wear prothesis in bra no problem well sweetie I am this yr 25yr Survivor Praise God. This is why I'm still here to give Inspiration to others like you. It is doable. Hang in there I kept Positive thoughts lots Hope. msphil idc stage2 0/3nodes Lmast 6mo chemo then got married😁 then 7wks rads and 5yrs on Tamoxifen. Pray this helps you and others.🙏
Aug 2, 2019 01:14AM HeartShapedBox wrote:
Thank you everyone, I just wanted to update that I DID indeed start neoadjuvant chemo today. I was scared and leery of it initially, but after getting a metastatis scare (ended up being a benign liver growth), I realized I needed to buck up, grit my teeth, and face my fears.
Aug 2, 2019 08:49AM - edited Aug 2, 2019 08:49AM by mom2bunky
You are a strong, brave woman HeartShaped. Well done. The only way out is through with this cancer crap. I'm thinking of you and wishing the best.
Aug 2, 2019 09:53AM Homemadesalsa wrote:
Hi- I completely understand your fears. This is do-able, but certainly not always fun or pleasant, haha. Exercise is what helped me get through it- I'd go to the gym or ride my bike or at the very least walk around the block every single day, and that made a huge difference.
Also, join the thread for your chemo date and you can help each other. My 'starting chemo in January 2018' ladies were SO supportive.
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