Woke up very sad and scared
Hi everyone, I keep moving to the next board appropriate for my situation.
I'm 33 and was just diagnosed (as of now) stage 2, 4.5 cm on the left breast. No lymph node involvement. But, the doctor is doing a bone and cat scan next week and I'm so terribly scared about what it might reveal. He already said given how young I am he expects the complete pathology to reveal an aggressive form, so that makes me even more frightened it could be somewhere else. I feel *so so stupid* for not finding it sooner. How could I be so oblivious?
Also, we asked him about fertility, and while he deferred specifics to that specialist, said that the process of harvesting eggs would delay treatment. They want to start neoadjuvant chemo the week after next. To me it's a no brainer: it's game time. But still, it's a lot to absorb - the prospect of early menopause and never bearing a kid.
I've really been keeping it calm and together and it hasn't even been that hard, but I woke feeling so afraid and sad, it's hard to describe. I'm so afraid of the next round of tests. But I know it's out of my hands so I try to enjoy my day for what it is right now. Maybe I'll feel better after I have my coffee. 
Thanks in advance for any words of support.
Comments
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I remember waking up exactly the same way, I slept to forget the nightmare and woke to it. Eventually I adjusted to this fearful but TEMPORARY state of being. Take heart in this: I've heard it said over and over that more aggressive forms of bc respond better to chemo treatments. Others can explain that better than I, but much research and new treatments have been focused on these more aggressive forms of bc, so get out there and kick ass through this bump in the road (and it is); the fear is temporary and eventually you'll see positive results from treatment and feel better.
I'm going to say that since you have no node involvement that your scan will probably show nothing anywhere else. Hang in there and know we are here for you, all 100,000 plus of us on BC.org. Let us know how your scan goes.
Hugs,
Claire
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Nighttime was the worst for me. I was able to be calm and keep it together during the day but night was an entirely different story. Every time I woke up I'd remember I had breast cancer and start crying, and my husband said I was even crying in my dreams. I'm crying now, remembering what it was like. That was the worst time ever.
Before I had my BMX I had the bone scan, chest and abdominal CT and was just convinced they'd find something. They didn't find anything. Then I had my BMX and they got nice clear margins and after that I never woke up scared and crying again. I'd wake up and remember "it's gone and it's going to stay gone," and then roll over and go back to sleep. (Well not literally roll over - LOL - that wasn't exactly possible post op)
I don't have an aggressive form so chemo won't work for me but they have me taking letrozole. The BMX recovery isn't the greatest. I've had one drain in for 4 weeks already and yesterday had to have another one put in because they pulled the others too early. But - no more crying
The physical pain is NOTHING compared to the emotional pain I was having. Now it's just waiting, waiting, waiting for this all to be over so I can get back to my life.I'm sorry to hear about the discouraging answer to the egg harvesting question. That adds an additional layer of sadness for you. I wish there was something I could say to make you feel better about that.
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Goldfinch, the first few weeks are the most difficult. Like Kayb said, we all understand. I don't believe I slept for the first week BUT it does get better. It is good that there is no lymph node involvement so far, so your scans will probably be fine. Once you have a treatment plan in place, you will feel more in control.
Also, please don't let any treatment scare you. I was so fearful of EVERYTHING. I had undergone a bmx and am now waiting for my final chemo infusion. It has all been super manageable. Make sure you gather a medical team that you will be confident with, that way you will be comfortable leaving your care in their hands. They will be there to guide your treatment plan and lay your fears to rest ( just one less worry on your shoulder). Also, surround yourself with friends and family that are going to be supportive and can help cheer you up during those dark moments. Members on this forum has been invaluable to my mental well being, some have even managed to make me laugh on my darkest days.
Best of luck to you , our prayers and thoughts will be with you.
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It has been the hardest thing I have ever had to face and I can relate where you are coming from. I used to end up sobbing on my bathroom floor in the middle of the night cause the terror and fear was too much. I have lymph node and skin involvement and am stage 3, I start neoadjuvent chemo next week.
I'm sorry to hear about the fertility, my heart goes out to you. Having to go through so much to save our lives one forgets the other sacrifices we make and one of those can possibly be infertility. I hope that this is not the case for you.
I also have an aggressive cancer and am hoping that I respond well to treatment.
There's so much we have to take in and realizing the road ahead is tough but you are right it's game time and we must fight and do what we need to do to get Rid of the cancer. I wish you only positive thoughts!!
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Not everyone even finds their bc so don't kick yourself about not finding it sooner. Mine was 7 cm and I had no clue. I woke up to severe pain and there it was. The fact that they aren't feeling node involvement is good news as it means it probably hasn't spread. Even my 7 cm had micromets in a sentinel node. Judging from others dx I would think it would have been more. So it's not so easy to say if this then that, but it is a good sign right there.
Try not to stress. Certainly don't look back at the should haves. That doesn't do you any good. Even those should haves may not have done anything. Focus on the here and now and not the what ifs for you don't know those details yet. Educate yourself on topics here of where you are at and don't go much further than where you are at in the process.
Grade 3 cancers respond best to chemo so in that sense, aggressive is good.
Try to relax and not get too far ahead of where you are at now and think the worst. Usually it isn't.
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Nwkgoldfinch really sorry you got the sad news. Can you have surgery before neoadjuvant chemo? My BS wanted me to have chemo before surgery but fertility was a big deal for me (given that I was dx-ed 4 month after my 1st pregnancy ended up in a miscarriage). I had my surgery and 3 days after aunt flow shows up and I was set for egg retrieval. I started chemo 23 days after my surgery. I had 8 nodes involved (5 wit macromets , 3 micromets). I don't know if I had a PCR , I am happy to have 6 embryos waiting for me. If fertility is important to you go for the surgery first. I was on a high dose of letrozole during the IVF process.
Hope you get the best options possible.
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Eh, I had an aggressive form of cancer (ER+PR+HER2+, Grade 3), and MO was willing to wait a few weeks before starting chemo (I had a vacation already planned). I understand why your MO wants to start chemo SOON, but he can't wait for egg harvesting? Really? If I were you, I would consider seeking a second opinion about the chemo start date and egg harvesting.
By the way, I also had neoadjuvant chemo, and was glad I did (it wiped out the active cancer in my breast and compromised node). But, I was diagnosed on 6/28/14 and chemo didn't begin until 7/23/14. That gave me time to 1) get a PET scan; 2) get a heart scan; and 3) get a port inserted. Hope things work out for you!
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I am 35 and DON'T have an aggressive form of cancer. invasive lobular, estrogen and progesterone positive, her2 negative. So don't make assumptions on what yours will be based on your age.
It is large though, and I do question how on earth I could have missed it. My breast surgeon assures me that with lobular is very sneaky and isn't surprised that I couldn't feel anything at all and then a few weeks later it is massive. The MRI said it is about 10cm long, but it could be a few small tumours.
I freak out a whole lot more about how and why I have BC at 35! What have I done or not done, and do I need to change something to prevent it in the future. I know I can't know, but wish I could.
I'm doing chemo first, because that is what my surgeon and oncologist feel is the best course for my age.
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Thanks, all, for the thoughts and support. I feel better today. I'm going to see the fertility specialist this week, and am getting a second opinion, as well.
Bluekoala - it sounds like you and I are in a very similar boat in terms of age and proposed treatment. My med oncologist said the same thing - chemo first. On the one hand I like to hear other people's feedback and on the other it undermines my confidence that I'm being told the best course by my doctors. For instance, a lot of people have been asking me about radiation and I'm like JEEEEZ, I DON'T KNOW. the way the doctors (breast surgeon and med oncologist) explained it , the chemo, then surgery will be the most effective for a 100% cure and that's reason enough for me. I'm hoping when I go to the city for a second opinion it's more or less on point with what they are telling me here in NJ, because I did get a good feeling about the doctor here. But, we'll see. I'm not going to shut off an open mind to another approach. I think I just want some sort of plan to grasp onto so I'd rather it coalesce around what I am gradually getting used to!
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I just remembered that my surgeon (not an oncology surgeon, just a general who did my BMX and lumpectomy) told me, when he shared my pathology 2 days after i found out, saying...."and it's aggressive!!!!!". After I got better information through CREDIBLE research the next few weeks, I realized that a high "grade 1" and "stage 2" ILC wasn't necessarily aggressive. Just because it migrated into lymph nodes doesn't necessarily mean a surgeon can determine whether it's aggressive or not. So he freaked me out for no reason, but I forgave him because he was the best breast surgeon around.
It's remarkable what doctors will share inappropriately because they simply feel they MUST share their own thoughts of what they think they know. Note the wording on that previous sentence, wink.
I bet you'll be fine with your scans. The advice already given on this thread is good.
Hugs,
C
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Unfortunately until you have the surgery, nothing is etched in stone. My 2 cm tumour at biopsy became 4 cm at MRI became a dumbbell shaped 4 cm + 3 cm attached = 7 cm. They can give you a good guess but ultimately it's the surgery path that's going to nail down exactly what your #s are.
For large tumours, many bs do chemo first. I wonder if they knew mine was more than 4 cm at the time of sx if they would have gone the other route with chemo first. But we can't second guess or stress about it. Have a cancer tx team of people you trust and feel comfortable with. That's key. A lot of this is mental too. You can get yourself in a tizzy just by thinking too much quite easily. There isn't much concrete about all this, why some do well or not-- a lot of it seems to be a crap shoot. The best thing you can do for yourself, which you are doing, is research, interview different providers---and go slow, remain calm and positive. Your body is fighting enough with cancer that it doesn't need added stress, so try to keep it as minimal as you can using meditation, yoga, or whatever relaxes you to help. Good luck with your meetings with providers this week.
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I've been told by my doctors to expect chemo, surgery, radiation and then hormone therapy for ten years. So if anyone, in person or on these forums, tells me I am not doing it right then they can discuss that with my doctors! I know other people have or haven't had whatever treatment, but I am me. My doctor told me breast cancer is an umbrella term and every situation is unique, and their job is to work out the best course of action for each individual.
But you are right, hearing other people's views or other people's treatments can make it easy to question your doctors choices.
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Bluekoala,
Your doc is right, and you can see that I've had the same treatments, perhaps not in that exact order. I've also been told I'll be on anti-hormonal for at least 10 years; perhaps till I kick off. I'm okay with that right now.
Claire
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Hi Goldfinch,
I'm so sorry that you find yourself here. BC is also a new thing for me too.... I've learned a ton from everyone here and can confidently say you're in the right place for encouragement, support and information.
Just to share what my journey has looked like these past few weeks: I'm 38 and was initially told I had "high grade" bilateral IDC and DCIS. The IDC on my right side measured 3cm via mammo/ultrasound. A subsequent MRI showed what appears to be 8cm of a web of IDC and DCIS practically covering my entire breast. Like you, no node involvement apparent.
I was referred to an MO who suggested neo-adjuvant chemo. My issues with that were:
1) my Ki67 score is 10. It's low; it means my cancer is not fast-growing. (My understanding is that chemo is most effective on fast-growing cancers.)
2) I am ER/PR+. I have been told that chemo is not as effective for my type of BS. (I know everyone's situation is different; this was a general statement made by my MO that is applicable to my situation.)
3) my oncotype score is unknown. Without the oncotype score, it's difficult to gauge how beneficial chemo will be for me.
4) yes, I'm "young" and the suspicious area is quite big; but that doesn't necessarily mean that I have a fast-growing, highly aggressive cancer.
In addition to having fertility preservation concerns, my main concern is that I do not want to be over-treated for my BC...if it's not a sure thing that I need it (I don't have any node involvement; I'm not HER2+), or that my cancer will respond to it, I don't want it. I would rather wait until after surgery, when I have more info about what's going on inside my breasts, to make this decision.
Chemo may be in my future, but by doing it after surgery rather than before gives me more information and more time. It's not a luxury everyone has but as my docs could not clearly justify why I "need" neoadjuvant chemo, I am taking this luxury of making this choice for myself.
I share this to say, please don't be afraid to push your docs for explanations and answers. Make them justify all their recommendations with crystal-clear explanations. Then, get second opinions. I'm dizzy from all the docs I've been seeing lately but I'm so thankful for getting more than one opinion and can sleep better at night with the decisions I've made.
Huge hugs, and best wishes
-E.
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Hi Nwkgoldfinch,
I am 39 years old and was diagnosed on March 11 with IDC, grade 3 ER-, PR+, Her2+. I have been told that my cancer is aggressive also. I have scans coming up this week prior to starting chemo next week. I too, have been feeling very concerned about the possibility of Mets. I hope that we can become "buddies" in this journey as we seem to be on a very similar path. I have been really focusing on staying in the moment. When a wave of sadness hits, I allow mysef to feel the emotion and then come back to the present moment. While I am not concerned about fertility, I am concerned about how my treatment for cancer will affect my two children. I will be thinking about you as you approach your upcoming scans.
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The actual size and aggressiveness won't be known till the pathology comes back after the surgery. Factors like HER2+ and ER/PR- qualify the cancer as aggressive. In my case, I knew the cancer was large as I could feel the area involved but what was a surprise for me was the lymph nodes involved. Only one or two showed up in the u/s, mamo and MRI and the pathology had 8 as the number of nodes involved.
Second, third opinions are great and each doctor will tailor the treatment to the individual situation.
Also, due to the young age the doctors want to throw the book at the cancer to ensure close to 100% total response.
Follow you guts and instincts and if you have questions ask for more details.
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Hi All!
First, thank you ALL for your thoughts, concerns, and support. It was very helpful.
I'll cut to the chase: I am doing one cycle of egg harvesting after talking to my oncologist again, as well as a second opinion doctor. In defense of my oncologist - my husband told me he was only rushing because I was insisting on starting as soon as possible, fertility be damned... so, I guess I was not firing on all cylinders in that meeting because that was not how I remembered it! Two breast surgeons and two oncologists agree: chemo first, though.
Pathology: ER+ / PR -/ HER2 - /Ki67 proliferation index = 95% He said the ER is weakly positive - only 16%, so he is sending it for more testing - an Oncotype test to drill deeper and find out if it is a true +.
Scans: bone scan normal; CT normal.
Likely chemo game plan: A/C/T --- some discussion of taking out the A if it is truly ER+, but he's leery of doing so, given how low it is. Tamoxofin/surgery/radiation later on. One step at a time, as far as I'm concerned.
Thank you all for helping me through this difficult time.
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Good luck with your plan nwkgoldf.
I was 32 at diagnosis and started with neoadjuvant chemo as well, ER+, Ki67 about 35. It was really reassuring to know whether or not chemo worked. Although ER+ my response was good.
Waiting a few weeks does not change your outcome. Try to stay calm and focused at one day at a time.
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