Second diagnosis
in 2019 treated for breast cancer chemotherapy surgery radiation Monday tested positive in lymph node and possibly lungs but too small to biopsy Assuming I would fight it it sounds like no surgery or radiation Verzenio and when I said so maybe year she said maybe less Did garden 360 and petscan tomorrow I was attempting to do a study is how it was found I’m having a very hard time dealing with the fact it might be months if anyone can help me I would appreciate I can’t eat sleep and cry way too much
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@ilovewhales I am not sure why you would have been given a prognosis of a year or less, since treatments can often go on for years. I don't know your specific situation, of course, but you may want to seek out a second opinion.
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ilovewhales,
What tougholdcrow said! I don’t see how anyone can make a prognosis based on a positive lymph node and a lung spot that can’t be biopsied. The PET should yield more info and again, don’t see how your doc made such a prediction when you haven’t had your scan yet! If I were in your shoes, I’d definitely seek a second opinion. Take care
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I have gotten same advice from several people and have started that process with a doctor office 11/2 hours away and left a message with a local My petscan is back did not mention anything about lungs and said 5 lymph nodes and a femur I had a bone scan while in research program that showed my bones were okay Thank you so much for responding
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I just want to share things I wish I would have known something may be cancer.The thing I missed and should not have was when I twisted back it literally felt a tear. I did mention but we agreed it was probably due to a bike accident where I severely dislocated shoulder and broke arm The hot flashes have been intense was told side effects of anastrozole
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@ilovewhales I also find it very odd that you would be given a prognosis without a thorough evaluation. Glad your working on a second opinion. Wishing you all the best. One step at a time♥️
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I found out I will need a bone biopsy wondering if anyone has had one and would be willing to share experience?
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Yes, I had a bone biopsy on my upper femur. I was made very, very comfortable with conscious sedation which included my favorite drug, Versed which has strong amnesiac properties. I don’t remember a thing and was only mildly uncomfortable afterwards. I am sure the experience can vary depending on location or other individual factors but Versed is a fabulous drug! I just had some minor surgery and told the anesthesiologist that I loved Versed as we were aiming for conscious sedation. He happily complied and I don't remember a thing 😊.
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thank you so much!!!!!!!
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That dr should be fired!.
I had a single bone met in shoulder/humerus bone. 8 years ago. Biopsy with versed. Yep just mildly uncomfortable after.
Also a few years ago thought the spots were lung mets but just common nodules. Watched it do nothing for 3 years.
Best of luck to you.
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thank you
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I just had a bone biopsy last week (vertebrae). Agree with what the others said - I was under conscious sedation. I did have some discomfort at the beginning of the procedure but they quickly gave me additional sedation and I don’t remember a thing after that. Minor pain for about 24 hours. Still have some soreness at the site of the biopsy but only if I touch it.
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thank you
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I absolutely love the support on this website! I am really working towards not being devastated all the time time still shaky at times but not all the time I have a femur biopsy tomorrow I pray it’s negative but really don’t think it will be it lit up on Petscan and a common site for it to migrate So I’m thinking the worst so it’s not shocking or as shocking to system
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@ilovewhales Glad to hear you are adjusting to this new normal you have been given. It's so so hard I know it took me months on end to stop crying over it. I figured I couldn't live that way and had to buckle up again and push on. Positive thoughts on negative, we pray for the best but prepare for the worst❤️
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I love pray for the best but prepare for the worst thank you
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Went for my second opinion today and my femur did test positive for cancer.She seemed shocked I had not been told already but no surgery I really want the five lymph nodes surgically removed femur radiation but was told I would have ribociclib and injections of fulveststrantI I really know this sounds probably stupid but I want surgery on the lymph nodes so bad Is this common to not operate? If anyone has any advice I would be grateful
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yes it’s common to not operate. I was diagnosed over 2 years ago with mets to liver lungs and brain and lymph nodes. When treatment started the first things to go away were the lymph node mets. They are no longer there! All other mets are stable or shrinking.
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Thank you!
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I had breast cancer 18 years ago. 2.5 cm tumor, two smaller ones, 4 lymph nodes. Dose dense chemo, mastectomy and radiation.
l am now diagnosed again with a large 3.5 by 3.4 by 6.6 tumor near my collarbone and sternum and resting on the lung. They are suggesting it is a new primary. I never thought that was possible after a mastectomy. Anyone know how they differentiate? Seeing the surgeon next week, no oncologist yet. Scared. But I beat it once….2 -
Breast cancer cells can travel through the lymphatic system or bloodstream. They can hide out for decades, too small to be detected, until they decide to grow and spread. Having a mastectomy can be very helpful in preventing recurrence but it not a guarantee of anything (across all stages, bc has about a 30% recurrence risk) even decades later as those tiny cells can lay dormant for that long. Yes, this is the part that no one talks about much since we are so focused on pink stuff.
As far as differentiating a recurrence from a new primary, that can be done by analysis of your previous tumor against the current one. For instance, my original bone lesion was an almost identical match to my original breast tumor so it was not a new primary.
The beginning is the hardest (as you may remember) and although there is no cure for metastatic bc (if you have mbc) treatments have really come a long way (I am stage IV de novo for 13 years, with recent progression). Yes, it is scary but try to deal with what you know now to be true and not speculate too much over things that might not happen. Take care1 -
And as another example, in August I was diagnosed with a new primary. The first in 2008 was ER+ PR + Her2-. The new one is triple negative. They were only about an inch apart.
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thank you all for your comments. I’m trying to be positive, but I know too much. I am a nurse, and even worse a hospice nurse. I love my work, and remind myself that I see a select group, those who did not do well.
I count my blessings. I have a wonderful man in my life who is devastated but with me all the way. Too many good friends, people I see every week, who are there for me. A son who will come when needed, he is single and can work from anywhere. Neighbors who I’m close to. I live in a one level condo, an elevator building. I am in a mu+h better place than I was 17 years ago.I will continue to let you know what’s going on, and thank you again for your support
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I’m so frustrated I have had two opinions and both said no surgery I really want surgery I don’t know If I should get a third opinion or if I’m being irrational I’m always the person who says whatever you think is best I’ll listen but this is my life I’m so sad confused scared and sometimes I’m getting better sometimes I’m crying
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just feeling scared.
Surgeon appointment Tuesday. Since the tumor is in the chest wall, and on the lung surface, I’m not sure if this is stage 3 or 4. Not sure I want the answer
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I completely understand the desire to be free of the cancer. But in most cases chemotherapy will eliminate it. And if it doesn’t they will know more about the cancer, and try different treatments. Hang in there
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thank you and you hang in there as well if you can let me know how they stage you I’m hoping and praying it’s 3 not 4
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@exbrnxgrl
saw the surgeon. The tumor is inoperable. Because of the location, if they did surgery they could not get clear margins and my lung would be unprotected—essentially the cure would kill me. Thus it is at least stage 3. There is concern about Mets to my rib. There is evidence of osteoblastic lesions. The PET scan will determine whether this is from direct contact with the tumor or from cancer cells circulating in the blood. So even if that rib has cancer, it might not be Mets. Of course the PET will be looking everywhere.
The cancer is definitely a recurrence. Er+. Pr +. Her 2 neu equivocal pending FISH.
I’ll get input from the tumor board Tuesday. PET 4/21. Oncologist 5/6.
Not good news. Hoping it doesn’t get worse.
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@owensgrandma I pray that you will beat this one too. Keep us posted. Hang in there!🤗
@exbrnxgrl I admire you positive attitude. Thank you for sharing your experience and pray that you will beat this one too. My wish is that when my time come, God will make me feel like I was about to go on a vacation, happy and excited.🤗
@ilovewhales I have nothing to offer since I’m new at this. I just want to wish you all the best. 🤗
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my caring bridge post today
Best possible bad news
It’s been a difficult couple of days with the Pet scan last night and the oncologist this morning, but we have some answers and a plan.
The PET found that I have a large tumor in the chest wall, and cancer in one internal lymph node.
Good news the rib is not involved, and there are no indications that it has spread to lungs, brain, bone or liver. Still, he considers it a stage 4 cancer because of the size and other characteristics. That means it will be a chronic disease and I will probably be on medication for the rest of my life.
No chemotherapy as the tumor shows characteristics indicating it would be resistant and because I have neuropathy from my previous treatment. The risk of worsening neuropathy vs the benefit just isn’t worth it at this time, but might be later if it is not responding to other treatments.
So, tomorrow I will start an estrogen blocker (aromatace inhibitor). Soon I will see a radiation oncologist and probably start targeted radiation. After that I will continue the estrogen blocker and add a CDK inhibitor, another way to stop the cancer from growing.
These medications have side effects, but everyone is different, so hopefully I will tolerate them. Time will tell. They are expensive, but the hospital has funds to help with the cost.
If the tumor responds I have the possibility of a long life, with treatment. And if they don’t, there are many other drugs to try. I am very encouraged and hopeful. No one cried today, a good sign, lol.
Thank you all for your support and prayers. Special thanks to Paddy for being there, taking notes, asking good questions, and giving me hugs. And once again, I couldn’t do this without John. He is by my side for the entire journey and keeps me going with his love and support and all the small things (and not so small) that he does every day to make my life easier and show he cares.
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owensgrandma and exbrngrl I’m hoping for the best for all of us The woman on this board are amazing and I want good news for all of us Unfortunately that’s not always the case which is why I love pray for the best prepare for the worst wisdom from cookies54
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