Should I be worried? Feeling lost and scared again.
 

Hello ladies, we'll it's been quite some time since I've posted anything although I have been reading and keeping up with everyone.

It's been 3yrs and 7months since I was diagnosed. I finally got to a place where I could plan for the future and not think about cancer every waking moment. I see my oncologist and surgeon every 6 months now and have been living life to the fullest. Well all was going great until this past Monday. I had my 6 month check up withe my oncology surgeon, which I felt good going into. Well while I was there he found a lump in my right breast (my cancer was in the left breast). He was confident it was fatty neurosis from the mastectomy but since it was new he sent me for an ultrasound. Well panic set in.
Luckily I was able to get it done the same day and the place I go is amazing. They don't let u leave without u knowing something. They have a few radiologist on hand that look at the scans as u wait. The radiologist requested a mammogram since the ultrasound found nothing. But the mammogram found some calcifications that appear to be benign. But since they are new she wanted me to go back in 6 months so they can monitor it. For some reason that doesn't make me feel better.
I'm back into anxiety filled days. Where all I can think about is what if. I spoke directly to the radiologist and she said she was confident it was nothing to worry about and it is very rare to get cancer in the opposite breast especially after a double mastectomy and what she saw appeared to be benign. I was crying like crazy. She asked me if I was crying out of relief but I wasn't. I wasn't sure what to think even with her telling me not to worry.
So my questions. Why do I still feel fear running through me? Why can't I get it out of my head? I'm so very scared and I fear 6 months is gonna be a long 6 months to wait and see.
Should I be worried? Should I insist on more tests?
I see my oncologist on Tuesday and will talk to her but wanted to get some input from you wonder ladies.

I hate this so much and feel depression and anxiety setting in again. I had over come all of that.

Thank you all in advance. Your words are always appreciated.
Nydia Perez

Re: Should I be worried? Feeling lost and scared again.
 

would a PetScan show more?
Sounds like they don't think it's anything but understand your worry.
hugs
sarah

Re: Should I be worried? Feeling lost and scared again.
 

I understand where you’re coming from Nydia. I had a small “pimple” show up along my scar on Christmas Day, and my doctor just wants to “monitor” it, as it could be just a pimple or scar tissue (which is what they told me the first this this happened, and it turn out to be cancer). This pimple causes me stress every time I think about it, so I can understand why you would feel that way about finding a lump in your other breast. I would discuss the results with your doctor when you see her, and ask for a breast MRI. This is the test they used to see the small masses when my cancer recurred. Also, why don’t they biopsy the area? A biopsy would tell you right away if it’s cancer or not.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

Re: Should I be worried? Feeling lost and scared again.
 

We worry because we've been TRAUMATIZED. Of course you are having anxiety, the uncertainty of what lies ahead of you, well, you aren't naive to that like the rest of the world is. You've experienced having the rug pulled out from under you. You've endured the worst your body can give you and you have accepted that life is a balancing act that you have little control over. Your body has betrayed you in the past. You can no longer trust that everything is going to be OK. These are the thoughts and feeling that our friends, families and health care professionals have no understanding about. They cannot empathize. Of course you cannot stop thinking about it and worrying. It is a perfectly acceptable reaction.

Now, what are you going to do about it? How are you going to deal with it? How will you rise up and move forward? That's the real question. If you've been reading here, you know how difficult it is for me, every quarter, once the scans are planned, that dark anxiety creeps in. I have not yet found a way around it, I just push through but it's a miserable couple of weeks while I plan the scan, wait for the appointment, endure the scan and then wait for results. Walking outside has been my best therapy. I've tried the yoga and stretched mentioned to me and that helps simply because I am concentrating on something that is foreign to me and painful, I might add. Meditation does not work, it actually heightens my anxiety because I cannot reach a meditative state because my brain won't be quiet.

You'll find your therapy. It'll be uncomfortable for a while but you'll push through it and in six months, you'll have more information. Me, I think I would insist on a biopsy.

Re: Should I be worried? Feeling lost and scared again.
 

I had a similar thing, MANY years ago, also in opposite breast and it turned out to be nothing. They did a core needle biopsy, which I've since learned can also be "non-definitive". Calcifications in our breasts can show up near cancers, they can also show up near nothing else. The problem with non-surgical biopsy is even when they visualize the "core/calcifications" in the needle of the biopsy, and take that core sample, it can be negative, when nearby is cancer. This happened to me, and the radiologist called me and said, even tho needle biopsy was negative, he did not like what he saw on the film and felt I should have a surgical biopsy (out patient procedure). He was right in his experience and gut feeling.

All of that said, cancer is a MIND game. Each one of us has to find strength and coping mechanisms to handle fear. 21 years ago, when chemo was done and I was healing, I honestly felt that I was fine, and I resumed my life, with confidence. I was so naive, and it was before INTERNET, so I just assumed that I was "cured". I was also diligent, and when I felt any new lumps (fibrocystic breasts) I went to see my surgeon for his opinion.

Once I had a recurrence, I had to find new coping skills. For me, I used it all - art, writing, groups, exercise, visualization and at some point I came to terms with my own mortality. Meaning - I cannot control the outcome, and I can guarantee at some point I will die (duh). What I could control and what I could offer my kids, my family, my friends, was MY PROCESS. HOW I handled the WHAT that came my way. I became all about PROCESS. And that's still my focus. I've lived with stage 4 for nearly 10 years, and 21 years since my original diagnosis, so I've had lots of time to practice co-existing.

You are entitled to act "as if" you are 100% fine. Enjoy the best quality of life you can, while you are accruing your track record. Stay strong!

Re: Should I be worried? Feeling lost and scared again.
 

I am so sorry you are having to go through all of this. It truly sucks. I agree with what others have said, if there is any way you can, have it biopsied so you can know for sure, six months is just too long to live with the uncertainty.

I agree with Tracy. They are not the ones who have already been through hell, you are. It is easy for them to say just wait, oh don't worry you are fine.

I don't think you should have to wait so long to know for sure, especially given everything you have already been through.

Carol Ann

Re: Should I be worried? Feeling lost and scared again.
 

Thank you ladies. I really appreciate your responses.
I see my oncologist on Tuesday and will talk to her about any follow up tests or a biopsy.
I have been thinking about everything and remembered I had an ultrasound last year in May. I don't recall if I had a mammogram as well but the ultra sound didn't show anything in May. Well this time around the ultrasound didn't show anything either. That's why they did the mammogram. Only the mammogram showed the area. So I now wonder how long I may have had this. I've asked for my records as I should of kept better track of all of them but failed to do so. This area could of been there for over a year now. Since that was my last mammogram. I also had a chest xray done last month because of an upper respiratory infection which came up clear. I know an xray isn't a reliable way to diagnose breast cancer but just something else that came to mind.
Sorry I'm all over the place. Lol

Any how. I am going to talk to my doc and insist some sort of measures be taken to see what this is.
I cant bare to wait 6 months.

Thanks again!!

Re: Should I be worried? Feeling lost and scared again.
 

Be insistent with your doctor Nydia. She may tell you this is nothing to worry about, but you need to know for sure for your piece of mind. I really hope that she’s right, but if not, it’s better for you to know what you’re dealing with now. If you want more tests now, insist on them, so you don’t have to spend the next six months living in stress and anxiety.


¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled

Re: Should I be worried? Feeling lost and scared again.
 

I have dealt with this twice. Both times it was nothing. You can insist on an MRI. Have you had one before? I am asking because it shows so much that the results could be scarier than what you are going thru now even though all the things it shows are benign. Another thought is getting another mammogram in 3 months or taking your current films and ultrasound images to another breast surgeon for a second opinion.

Its really hard not to worry so I hate to tell you not to when you will anyway. Just know we are here for you 24/7.

Re: Should I be worried? Feeling lost and scared again.
 

Hello,

I also had this scare. My oncologist ordered an MRI and all was ok. Mine was scar Tissue and it's still there.

In order to move forward we have to do what gives us peace of mind.
Wishing you well!

Re: Should I be worried? Feeling lost and scared again.
 

So does anyone know if an MRI can differentiate between benign calcification and a malignant calcification?
I have had a double mastectomy with diep flap reconstructive surgery so not sure how reliable any of these tests are in that situation.

TIA!!

Re: Should I be worried? Feeling lost and scared again.
 

I was sent for a breast MRI after my local recurrence, however, they had already biopsied the area, so they knew there was cancer there. The breast MRI showed three small masses, however, I’m not sure if it could differentiate between a benign calcification and a malignant calcification. That’s something you should ask your doctor. I’ve been thinking of asking my doctor for another breast MRI to determine if the new pimples on my chest wall are scar tissue or cancer. I asked for an ultrasound, but she said that won’t show her anything, and she doesn’t want to biopsy the area. She said the pimples are so small, she’d have to have a surgeon cut them off instead of just using an needle, and, if it is cancer, doing that could make it worse.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled