Just diagnosed and can't cope
Comments
-
Thanks Ladyc, I'm falling into some dark spaces, will definitely try to find a therapist today!
0 -
yes, there are therapists who are skilled at helping people manage the challenges of a cancer dx. I hope you can find one soon!! Hang in there.
0 -
never mind on that mri with contrast today - scanner down and will have to reschedule for next week
0 -
I can feel your disappointment! I just found out I have 2 dates if biopsies... a week apart. Just want to hurry it up and get this out and start treatment.
How’s your emotions today??
0 -
hello sweetie we here know your feeling the fear not knowing but ill share with you i was diagnosed while planning our 2nd marriages i prayed for my now husband and only 42 which then was young. I found my lumo in the shower out of no where it was there. Got my cry out and decided to hold on to Hope once my treatment plan went into effect. Then my fears ease up. Praise God im now this yr a 26yr Survivor. My Positive thoughts that i Will get thru this helped. Hang in there. msphil idc stage2 0/3 nodes 3 mo chemo before and after Lmast then We got married then 7wks rads and 5yrs on Tamoxifen.
0 -
Thanks for the encouragement, msphil! I haven't been able to connect to hope yet, but I know it will help to get a treatment plan.
That's crazy that they've separated your biopsies like that Ladyc, can you get in touch with someone and schedule them sooner and closer together? In my experience, you have to constantly insist on what you need/want, or you will get completely ignored. There's been some kind of snafu with every single one of my imaging appointments, and each time, I persisted and wound up being seen sooner. My canceled MRI was rescheduled for Tuesday next week, and I called several times to try to have it changed, because I just didn't feel I could wait that long. I now have an appointment at 11am tomorrow, if they're able to fix the scanner by then. I got in because of a cancelation, of course, they didn't just make up an appointment for me, but if I hadn't bugged them, I don't think it would've been me getting that slot.
Also want to thank you for pushing me to see a therapist, Ladyc. Yesterday, I spiraled into a very dark place. I was trying to brace myself for the worst news, thinking of all the times I've had back pain and shortness of breath, feeling sure I must have metastases all over. The depression and anxiety was crippling. It is very clear to me now that I need some professional help to deal with the impact of this on my mental health. I've reached out to a cancer counseling center and hope to connect with them tomorrow. Just gotta find a way to get through this!
0 -
That’s great you connected with a counseling center! I know they usually offer all types for all members of the family too. I hope it will be helpful! And I sure hope they can fix the scanner so you get it done today. Let us know.
I am waiting for a call back from the oncologist because I want more info on my mri results. Just got pretty worried about it all. I have had pain ever since my initial mammogram and for a few months before an occasional odd chest pain. It’s like something is pressing on a nerve all the time. And I guess I worry.
0 -
I am sorry you are going through this. I was 49 but I had my kids young and my were grown at least least when I got mine and not little ones.
Have you had ONCODX testing yet? It sounds like you are ER+/PR+ and Her2nu- and you know that much already.
The ONCO score will help determine benefit of chemo. For me even though I eventually needed a mastectomy, I still escaped chemo since the benefit of chemo did not outweigh the risks of chemo according to my MO for me.
Everyone is different and every cancer is different. With a good medical team and a supporting family you will be able to live longer.
The ladies here are a good support and there are usually groups for each surgery group even and that was helpful for all of us to know we were doing ok at that point compared to others who just had same thing done.
Best wishes to you in your treatment.
0 -
Thanks for the support, bc. I'm desperate to avoid chemo, really don't want to go public with this, but my ki67 alone suggests that it'll probably be recommended, and if it wasn't I'd probably 2nd guess that forever.
Had my MRI with contrast yesterday, and spoke to the radiologist about the results right after. The good news is that the tumor measured 1cm, which is close to the ultrasound size of 8mm, and much smaller than my palpable lump. Also, the lymph nodes didn't look "too bad" (his words) and are basically clinically negative at this point. The bad news is that there were large areas in each breast that he couldn't evaluate, because of the tissue density and breastfeeding. So, it's basically inconclusive. He did think he identified the two small lesions in the right breast that were spotted on ultrasound (bi-rads 3), and he thought those were fibroadenoma (i.e., benign). I'm having them biopsied next week to make sure.
Also next week is results of BRCA test and consultation with plastic surgeon. Here we go...
0 -
Update and a question:
Had biopsies on three lumps in right breast, all were benign.
Since speaking to my breast surgeon on the phone yesterday, I've been wracking my brain trying to figure out which surgery to have, while also waiting for the BRCA to come back. Surgeon isn't really making a strong recommendation at this point.
Then, today, my MO suggested that I do neoadjuvant chemo in a clinical phase 2 trial that she is running. Given the size of my tumor (1cm), I don't think that there is a great need to shrink in order to facilitate surgery, especially since I'm leaning towards a mastectomy anyway. Also, I'm not a big fan of delaying surgery, but I understand that one benefit would be to be able to assess responsiveness, potentially allowing me to stop treatment if it wasn't working. So, after 6 weeks, I would do scans and decide if there is shrinkage or not, and presumably stop if there isn't. Except it's going to be pretty hard to make the case that it's absolutely not working (unless the tumor gets bigger). And maybe the decision will be to just keep going, in case more cycles prove beneficial.
On the other hand, since I do expect to do chemo (for peace of mind, even if they say I'm borderline, and even if the only thing worse that I can imagine is death) it might be good to get it over with, and getting on this trial means that I would get PET, CT or bone scans to look for metastases (which is otherwise not recommended since no lymph involvement has been proven yet).
Any thoughts? Does anyone else think it's a bit unsettling that my MO is recommending me for a trial that she herself is running? For all the talk in this thread about how nobody cares about ki67, she seems to be taking it quite seriously, basically using that and the intermediate grade to justify chemo, and my inclusion in the trial specifically. I tried twice to call for 2nd opinions today, but got transferred and hung up on each time, and didn't have the stamina to keep going.
0 -
Hi dread, what is the trial for? Are there any experimental treatments added to the standard of care chemo? Is there randomization?
I was on I-SPY-2 trial with neoadjuvant chemo. Experimental drug was Keytruda added to the standard AC+T chemo (in reverse order, actually - 12T + 4AC), but I was in a control arm (no experimental drug, just chemo).
In addition to several progress MRIs I had to do biopsy of the tumor 2 more times - that wasn't fun, and filled me with, well, dread. The trial inclusion criteria for hormone positive/Her2- patients like myself were tumor size 2 cm or more, MammaPrint High Risk. My MO guessed that my MammaPrint would be high risk based on my KI 67 of 40% and the fact that in young women (I was 40) hormone positive BC tends to be aggressive. She hoped she would be wrong, but alas.
Anyhow, I did the chemo and my tumor shrunk almost immediately. At the end of Taxol nobody, including myself, could feel it and MRI showed no tumor. There was 3 mm left at surgery, but it was a great response for hormone positive tumor.
I did the trial for similar reasons you are thinking: I wanted to know if chemo worked. But I also know I would pretty devastated if it didn't.
I would read the trial description and consent language very carefully. I would NOT do the trial until I knew results of my Oncotype or MammaPrint. Getting chemo "just in case" is not how breast oncology works these days.
0 -
Hi FarAway, thanks for responding! See, that's the tricky part, it's neoadjuvant, so onco would be on biopsy, but to get the biopsy sent for onco I need to consent to being part of the clinical trial (although could obviously drop out at any point). At least that's how my MO put it, and I see the logic: In general, the preference is to do onco on tumor, so if I'm doing surgery now, that's the way to go, but if I'm doing neoadjuvant, onco would be on biopsy.
The treatment is 12 weeks of weekly Carboplatin+Paclitaxel with Bevacizumab. The novel part is the Bevacizumab, which apparently is FDA approved for some cancers but not breast. As far as I can tell, it prevents blood vessel formation, so it's main purpose is likely to strangle the cancer by cutting off blood supply. The trial isn't randomized, so I would def get the treatment.
Honestly, right now, I'm so overwhelmed that I feel like all I can handle is a lumpectomy to get the tumor out while I get my bearings. I imagine then I'll do chemo, followed either by radiation or a mastectomy/reconstruction. Although "I need to catch my breath" probably isn't the best rationale for a cancer treatment plan, it's the only one I can think of right now without hyperventilating.
0 -
I am so sorry you are dealing with this right now. I was 49 when diagnosed and now close to 60. Don't' let your fears keep you down.
I had ER+/PR+ and Her2nu- and my breast surgeon told me it is the "nice cancer. It responds to treatment easier. There is hope you can have a long life with your children still.
If you have a spouse/family friend who can help support you during this time in person that is always help to have someone physically there to assist if you need help if you have kids and cannot for an appointment or just tired from treatment.
Best wishes to you in your treatments and may you have a long life!
0 -
thanks bc! my husband is an absolute rock, and i'm too busy with the hell in my head to show him how much i appreciate it. i'll have to make it up to him sometime, hopefully many years from now, as i look back on this with peace of mind, as you are doing
0 -
You may want to message Cure-ious as she tends to know all about what trials are on and what they are trying to achieve. She may have some thoughts to help you decide and clarify questions about why this trial now.
0 -
Thanks for the tip, Sondra, I'll PM her!
0 -
The trial sounds interesting. So, no cytoxan or anthracyclines like in AC? I'm not an expert on chemos, of course, but the combo sounds more geared towards triple negative or HER2+ (carboplatin). Sorry, I don't know much about any of this, but, just from my personal comfort level, I would be a bit uneasy about Phase 2 trial for a completely treatable cancer such as yours. There is a standard of care chemo (either TCx4/TCx6 or AC+T) that gives good results. I'm not discouraging you in any way, just saying that personally, I would think long and hard before taking an experimental route when more traditional treatment gives decent results.
I totally understand about onco on biopsy vs entire tumor, that was my experience too, except the test was MammaPrint. Same idea though. Would they boot you off the trial if your oncotype is low?
I also completely understand "I need to catch my breath" rationale! That's how I chose my path - I was so afraid of surgery and wasn't 100% sure if I wanted lumpectomy or mastectomy, that doing chemo first allowed me the time to think. It is whatever you can handle. In my personal experience, even double mastectomy with expanders (pretty invasive surgery) was easier than chemo, but I didn't know that 3 years ago.
Whatever you choose, the only thing I recommend is to not second-guess yourself.
0 -
Completely agree, FarAway. I would much rather fall back on the standard of care than some phase 2 trial that doesn't even clearly apply to me (pasted some of the verbiage from the consent form below if you're interested in the research).
I'm scared to death of all of it, surgery, radiation and chemo, but chemo most of all, and I really need a minute to wrap my head around it. Meanwhile, I need to figure out what my surgery is going to be. You mentioned that you did mastectomy with TEs. Would you mind sharing the duration of the hospital stay and the recovery at home? I am leaning towards lumpectomy with radiation, but also have extremely dense breasts, so am toying with the idea of also doing a bilateral reduction (getting rid of as much fibroglandular tissue as possible) and TEs as place-holders for saline implants or fat transfer following the radiation. Don't know if that makes any sense, will hopefully get to chat to a PS next week and see what they think.
This is asinine, but the worst part of this to me, other than the threat of not being around for my kids, is that I won't be able to keep it private. I abhor pity, and the thought of being known in my small university community as that "unfortunate person with cancer" seems way worse than the nausea and bone pain (although it might not once I'm hit with the nausea and bone pain). I guess I just have to get over myself
CONSENT TO ACT AS A HUMAN RESEARCH SUBJECT
You are being asked to participate in a research study because you have large breast cancer, inflammatory breast cancer, or have positive lymph nodes that are not treatable with surgery or radiation alone without systemic chemotherapy. Participation is completely voluntary. Please read the information below and ask questions about anything that you do not understand. A researcher listed below will be available to answer your questions.
Chemotherapy agents or combinations of chemotherapy agents have produced tumor shrinkage in many patients. This research involves neoadjuvant chemotherapy (chemotherapy given before surgery). The traditional role of neoadjuvant chemotherapy (NAC) was for reducing the size of a, tumor that is inoperable breast cancer to make them operable. Because of the evidence that outcomes are comparable for patients treated with chemotherapy whether it is given before surgery (neoadjuvant) or after surgery (adjuvant chemotherapy), more research has been using NAC for operable tumors to evaluate possible benefits like improving outcomes or facilitating surgery.
This trial is designed to see if this neoadjuvant chemotherapy combination can improve long-term outcomes and/or surgical outcomes. Giving the chemotherapy prior to surgery could reduce the amount of remaining cancer (shrink the tumor) to thereby allow surgery as a treatment option or might increase the likelihood of breast-conservation (removing less breast tissue) during the surgery.
In addition to studying how much residual tumor is remaining in the breast after the treatment, your doctor also wants to find out what side effects are associated with this regimen of chemotherapy.
The following chemotherapy drugs used in this study have been approved by the Food and Drug Administration (FDA) for cancer:
Bevacizumab (Avastin®), Carboplatin (Paraplatin®), Paclitaxel (Taxol®), Pertuzumab (Perjeta®), Trastuzumab (Herceptin®)
Bevacizumab is not approved for breast cancer by the FDA, but it is approved for other cancers including cervical, colorectal, lung, and renal cancer.
While Carboplatin is commonly used in breast cancer, it is not approved for breast cancer. A Paclitaxel-based regimen is the standard of care treatment for your stage of breast cancer.
For HER2 positive patients, Trastuzumab and Pertuzumab used in combination with chemotherapy is standard of care treatment in your stage of disease.
HOW LONG WILL THE STUDY GO ON? If you agree to participate in this study you will receive 12 weekly chemotherapy treatments which will carboplatin and paclitaxel, with addition of trastuzumab (Herceptin®) and pertuzumab (Perjeta®) if you have HER2 positive cancer or bevacizumab (Avastin®) if you have HER2 negative cancer. After receiving this chemotherapy protocol, your treating physician may decide to give you additional chemotherapy as the standard of care. After you have completed all therapy you will have surgery as the standard of care. However, you will give permission for the investigators to obtain the pathology report of the surgical specimen for analysis of treatment outcome. You will then be followed for up to 15 years as part of the study procedures.
WHAT PROCEDURES ARE INVOLVED WITH THIS STUDY? The study component in this protocol is to evaluate the response of patients receiving Carboplatin and Paclitaxel, plus Trastuzumab and Pertuzumab (HER2+) or Bevacizumab (HER2-) in the neoadjuvant setting. The procedures are described below respectively.
During the main part of the study...If you are eligible to participate in this study, you will receive chemotherapy treatment which will include carboplatin and paclitaxel, with addition of trastuzumab (Herceptin®) and pertuzumab (Perjeta®) if you have HER2 positive cancer or bevacizumab (Avastin®) if you have HER2 negative cancer.
After completing this protocol, if your doctor decides that there is still cancer remaining in the breast, your doctor may give you additional therapy such as doxorubicin and cyclophosphamide, which is the current therapy given to patients like you as the standard of care, not part of this treatment protocol.
Weekly doses of carboplatin/paclitaxel will be given, for a total of 12 doses. In addition, if your cancer is HER2 positive you will receive trastuzumab weekly for 12 doses and Pertuzumab every three weeks for 4 doses; or if your cancer is HER2 negative you will receive bevacizumab every two weeks for a total of 5 doses.
While on chemotherapy, you will receive regular blood tests to see how your body is reacting to the chemotherapy. All of these tests are considered standard of care for your disease. You will see your doctor every 4 weeks for a physical evaluation; each clinic visit will last approximately 1-1½ hour.
Response Assessment: You will have the primary disease site evaluated at least every 4 weeks with physical examination documentation and any clinically indicated imaging for tumor size measurement, such as ultrasound
Surgery: Your post-chemotherapy surgery must take place no sooner than 21 days after last dose of Herceptin; and 28 days after last dose of bevacizumab to prevent wound healing complications.
Risks and side effects related to Bevacizumab (Avastin): The addition of bevacizumab to paclitaxel resulted in an increase in high blood pressure and function of the brain. Adverse events previously associated with bevacizumab that also occurred more frequently in patients receiving bevacizumab included high blood pressure, excess of protein in blood, blood clot events, bleeding, congestive heart failure, and gastrointestinal infection (GI) perforation. There was no observed increase in the incidence of vascular thromboembolic events with the addition of bevacizumab to paclitaxel. There was a higher incidence of neuropathy, neutropenia, and infection/febrile neutropenia events among patients who received paclitaxel plus Bevacizumab. Paclitaxel exposure was significantly greater in patients receiving bevacizumab, which may have accounted for this higher incidence.
Posterior Reversible Encephalopathy Syndrome (PRES): There have been rare reports of Avastin-treated patients developing signs and symptoms that are consistent with Posterior Reversible Encephalopathy Syndrome (PRES), a rare neurological disorder, which can present with the following signs and symptoms among others: seizures, headache, altered mental status, visual disturbance, or cortical blindness, with or without associated hypertension. A diagnosis of PRES requires confirmation by brain imaging. In patients developing PRES, treatment of specific symptoms including control of hypertension is recommended along with discontinuation of Avastin. The safety of reinitiating Avastin therapy in patients previously experiencing PRES is not known.
0 -
It does sound like the trial is for those with larger tumors, although also for those who would need chemo anyway. Your nodes are clinically clear, right? Also, the language about "clinically indicated imaging for tumor size measurement" is a bit vague. Finally, I thought avastin was in some clinical trials for BC already, wonder what the outcome was.
I stayed 1 night at the hospital - surgery in the morning, left around 2-3 pm next day. I was very sore and needed help getting out of bed for several more days (I never knew I was using my pectoral muscles to get up from horizontal position!). Once up, though, I was totally mobile although my range of motion was restricted for several weeks. Overall, I healed very well and pretty quickly. I had drains for 6 days. I think mastectomy vs lumpectomy is such a personal choice. For me, I also had DCIS in another breast, 2 areas, and surgeon offered me lumpectomy on the right (invasive) side, but was skeptical about cosmetic outcome on the left. With that, it seemed silly to have mastectomy on Grade 1 DCIS and lumpectomy on invasive side, so I opted for BMX.
I hear you on the pity. I couldn't stand that I somehow was "THAT person". I think it hits hard, especially, if you've never been sick or otherwise dependent on others before. But I mostly moved past it.
0 -
Yup, clinically cleared nodes. And you're right, there's apparently been a fair amount of research on this already. It's a pretty messy literature, but according to one meta-analysis from 2017, it seems to improve progression-free but not overall survival in metastatic BC, and complete response rates when neoadjuvant, but not long-term outcomes when adjuvant, in early BC. Not sure what's new about this particular trial that my MO is running, maybe the Carboplatin-Avastin combo? Either way, I'm left feeling a bit like she's trying to fit me into this trial more than fitting my treatment to me...
Thanks so much for sharing the details of your surgery, that's really helpful. I'm happy to hear that BMX+TEs recovery can be quite reasonable (although I keep picturing my 2-year-old pulling out my drains), in case I wind up going that way, by choice or necessity.
Thanks in general for being on this board and looking out for newbies like myself. The only thing that gets remotely close to reducing my anxiety is connecting with people who have stared down this beast and lived to tell. I really hope I get to be where you are some day; with treatment behind me and a shot at normalcy. And I hope, if that happens, that this will have somehow made me a better person.
Please let me know if there is anything I can do for you. I'd love to lend an ear if you ever want to troubleshoot something, and I have access to the national library of medicine if you need to get your hands on some literature.
0 -
dread I think the first question you need to ask yourself is how much you trust your MO or if you want a second opinion on treatment if you are unsure and feel you are being pressured into a clinical trial you are not sure of. If you are comfortable with it then fine. Everyone has to treat themselves the way they see best. If not, stop and breathe and look into another opinion with a different doctor if necessary. Best wishes to you.
0 -
Thanks bc, I totally agree! I've pretty much decided not to do the clinical trial, but I think there is a more general issue of whether my team is the best for me. Once diagnosed, my first priority was to be seen as soon as possible, and that's probably not the best selection criterion. As you say, I need to stop, breathe and look into my options.
0 -
Definitely don’t make such a huge decision without a second opinion. I also used the online forms to get call backs for my requests. I contacted 3 places and got call backs from 2. To have surgery first means you get it out and can start the healing sooner... that seems like a big plus to me, especially when your cancer is small. Can you tell me your various % on Your pathology? Second opinion and even third option if you are not totally comfortable in what direction is bein suggested ❤️❤️
0 -
Thanks lady, was just thinking of you and wondering how things are progressing on your end. I've submitted an online form for a 2nd opinion, so fingers crossed that they get back to me. Meanwhile, I'm pretty set on trying to get surgery to happen next week. Ideally I'd like to have a lumpectomy + bilateral reduction of fibroglandular tissue (definitely ordering off the menu, so we'll see what they say). Yes, I really want to get this thing out of my body, and I also want the full histopathological picture so that I can make more informed decisions going forward. From the biopsy, I'm ER+(100%), PR+(50%), ki67=40%. My MO gave the high ki67 and intermediate grade as justification for including me in the clinical trial, which otherwise seems geared towards more advanced stages.
Hope you're doing ok!
0 -
dread, I haven't commented previously but I've been reading your thread,
How is intermediate grade a justification for including you in a clinical trial that is meant for more advanced stages? Grade 3 with a large tumor, maybe, but grade 2 (and mitosis 1) with a small tumor? It sounds to me as though your MO is trying to recruit people into her clinical trial, whether they meet the criteria or not. That doesn't bode well for her research.
0 -
Do you know the name of the trial? Often when the trials are still recruiting participants they include a description and the inclusion and exclusion criteria in their web page. You can also ask to read the consent at home before you sign it.
0 -
That's my sense too, Beesie. The relevant exclusion criterion is that you must not "have a small tumor (<1cm) that does not involve the lymph nodes", so I'm clearly a stretch, being 1cm and node negative based on clinical evaluation. I'll give my MO the benefit of the doubt and assume that she was simply extending an opportunity, but I wish she was more focused on tailoring a treatment specifically to my needs. For example, when I asked for an adjuvant alternative to the trial, she only mentioned AC-T. I've pretty much resigned myself to doing chemo, based on my own research, but I was hoping, if I'm histologically node negative, that I could perhaps get away with a TC protocol, shown here to be superior in HR+N0 patients (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5549453/). I wish she had taken the initiative to discuss a range of options. On the other hand, she's a sweet lady, and I feel like she listens well and is responsive, which are also really important qualities.
Thanks, barbara, I do have the consent form (posted some of it higher up in the thread) and read it carefully before deciding to decline.
0 -
Dread2020, if it were me I would definitely find a new oncologist. It would just be is too much going on and I wouldn't want to question whether my onc could put me first. I found my wonderful oncologist thru a second opinion. I wasn't sure about the onc that had been originally recommended and I had seen so I got a second opinion. So glad I did. He was just the best and always had time for me. Good luck.
0 -
I hear you, Cowgirl. It feels like there might be some trust issues going forward. For now, I'm moving ahead with setting up a second opinion, and will probably make my decision about switching MO based on the congruence between 1st and 2nd recommendations for adjuvant treatment, and how willing she is to adjust based on the 2nd opinion if it differs from hers.
0 -
dread - I have a second option appointment at Stanford on sept 10th. Decided to go ahead and may end do surgery there... it’s a 4 hour drive. Had my MRI assisted biopsy today and one of the small masses seems to have disappeared. That seems amazing to me, but also interested in what Stanford says. Now just waiting for pathology on the biopsy from today, then see my oncologist and the. Standford I have 3 appointments all scheduled one after each other. I’m feeling good about the second opinion and hope you can get one too very soon! I spoke with a cancer connection buddy who told me she got second and third opinions from different hospitals before deciding what to do.
0
