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Topic: I’m so worried.

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Aug 13, 2019 12:21PM

Boobicles wrote:

Hi everyone,

I’m 42 - I’ve found a lump 3 weeks ago and was referred to the breast clinic and saw them 10 days later. Had a mammogram and then the consultant came in to do the ultrasound (after having checked me). I lay there for 20 seconds until he says the dreaded words “I’m so sorry but this definitely looks like cancer.”

Obviously my world fell apart. He gave me a Birads score of 5. Then had biopsies done in tumour and lymph nodes. When he saw me after biopsy I asked him what stage we are looking at. He said it looks like a stage 2 (Tumor was less than 20mm). Felt a huge relief at that stage. Cancer is the worst news - but I feel lucky being “only “ stage 2.

Then 2 days ago I’m starting to get horrible back pain, spreading down to my legs. Well you know where my mind is going with this. I’m now dreading that the cancer has metastasis and fear I’m a stage 4.

So my question is: how confident can a consultant be that it’s a stage 2 without having had the final biopsy results in? Surely they’d have to see whether there’s any lymph node involvement first? Is it common for a consultant to get it wrong at this stage? Would they have seen anything else if it wasn’t further along?

I’m getting the results on Thursday afternoon but I cannot take this anxiety. It’s like torture. I’ve got 4 children, I’m a single mum, dad not involved, I’ve got no family in this country (i live in the UK but am originally from Germany). If the worse came to the worse I don’t know what would happen to my poor children. I’m so very worried about them.

This backache is making me very worried. Please help me

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Aug 13, 2019 02:19PM - edited Aug 13, 2019 02:28PM by mom2bunky

Okay. Some of this seems iffy to me, especially staging from a mammogram and ultrasound, but I'll let others with far more experience respond to that.

What I do want to comment on is this: You are right to wonder about the accuracy of the doctor's comments so far. Doens't mean they're not right, just that it's too early to be sure. When I was at your stage of the nightmare (and it's the worst, you don't know much yet, you've not planned next steps yet) all the sonogram told the doctor was that it "looked concerning" and "the nodes look clear." That's it. They estimated the size, but that's all it was, an estimation. When I had the biopsy, the doctor told me she thought it was cancer for sure, but again, not confirmed till the biopsy results are back. You won't know all the details for sure until the thing is out after surgery. Even the biopsy, while mostly accurate, details may change after surgery. Mine was downgraded from a Grade 2 to a 1 for example. It was also slightly smaller than it appeared in imaging. After surgery is also when you get the actual details of what is going on and are staged. That doesn't mean you wait for surgery to have your plan in place. They recommended a plan for me based on imaging and biopsy results, and it was what we ended up doing, with surgery as the first step. Each case is different, though often similar depending on the details of your cancer diagnosis, if it's confirmed.

Also, I particularly want you to know that after I knew it was cancer and before the surgery I had pains all over the place. I too thought "OMG it's spreading." I have a friend who is an oncologist and tells me many of her patients experience this. Sure enough, once it was out and I had answers, the pains were gone.

It's sooooooooooooooo hard, but try not to worry too much right now until you have more concrete answers. At least do not drive yourself crazy with so little information to go on. The anxiety is awful, I get it, I do.

Dx at 55. KI-67: 18. Oncotype: 24 Dx 3/26/2019, DCIS/IDC, Right, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 5/9/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/25/2019 Whole-breast: Breast Hormonal Therapy 8/5/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 13, 2019 03:42PM Boobicles wrote:

thanks so much for your reply mom2bunky.

The reason that my consultant told me a staging was cause I was asking him, looking at my ultrasound, what stage did he think I was. He obv couldn't say for certain but he said he thinks it's a stage 2.

But yes like you, I was thinking the same, if the pathology report isn't back, how would he know?

He said his recommendation is aggressive chemo first and lumpectomy later but that the treatment plan would be discussed Thursday morning with the multi disciplinary team and it might change. So surely there have to be other cases where they do the chemo first and lumpectomy after and confirm the stage from the biopsies? I wonder...

Thank you so much about telling me that you've had the whole pain situation before final diagnosis too. And also about what your oncologist friend said. It does make me feel a bit more reassured. I just pray that that's the case with me.

Can't wait till Thursday afternoon until I know for certain.

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Aug 13, 2019 03:55PM - edited Aug 13, 2019 05:06PM by Moderators

Hi Boobicles,

We just wanted to drop by and welcome you to our amazing Community. As you can already see, this space is the best place to find answers, advice, and most importantly, support -- we're all here for you!

We're sending positive thoughts your way that you get some concrete answers soon and get a plan in place. You're sure to start feeling a little more at ease once you know more and start treatment. We know the waiting is the absolute worst -- just know we're here waiting with you. Please keep us posted with how things go on Thursday!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 13, 2019 04:41PM - edited Aug 13, 2019 05:05PM by Valentine214

I have been a lurker on the boards for almost 2 years now. Your post made me want to join and hopefully help you or others going through this hideous diagnosis (not sure I would have been much help to anyone before now quite frankly.).

As everyone on here will tell you, this is the absolute worst part. My anxiety was through the roof. For the first time in my life I needed to take Xanex just to function. If you feel you need it, ask for it! There is no reason to have the feeling of doom hanging over you.

Do you have any close friends that can help out if you need someone to mind your children during appointments and treatments? I am not sure how things work with the UK healthcare system, but we have social workers at my cancer center to help with finding low/no cost child care, housekeeping, shopping and they can sometimes hook you up with former patients who volunteer to be your cancer buddy. I would definitely ask what services they might be able to provide. I am sure you are Super Mom, 😉 but if you need help ask for it. If you need someone to talk to DM me. I would be honored to help.

Please know you can do this. I had never had more than the flu my entire life. I cannot tell you how petrified I was when I was diagnosed and did not think I was going to be able to handle it, but I did. Not elegantly, but I made it through and so can you.

P.S. I read a book a long time ago by Dr. John Sarno, can't remember the name (might be Healing Back Pain?). It was basically about how most back pain is all in your head. It teaches you that when the brain is overloaded with worry/anxiety, it will give you something else to concentrate on such as back pain. Basically the brain goes into survival mode. I knew several others who read it and also got rid of their back pain.

Stacy Dx 9/19/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Chemotherapy 10/17/2017 AC + T (Taxol) Surgery 3/22/2018 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 4/23/2018 3DCRT: Breast Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Aromasin (exemestane)
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Aug 13, 2019 05:02PM B-A-P wrote:

odd he told you stage 2 already - I’d figure the oncologist would go over that. I didn’t get my staging till after my pet scan once I had a positive node come back. Hard to know a stage without some sort of body imaging (as far as I know - I was stage 4 from the get go )


I do understand very well the anxiety that comes with a diagnosis and thinking it’s spreading. Been there done that. I’m NED and every little weird pain or illness gives me anxiety. My radiation oncologist said “remember , you’re gonna get the same things you did before cancer “

Fingers crossed for tig

Dx 8/17/2018, IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Chemotherapy 9/18/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery 2/26/2019 Mastectomy: Left, Right Radiation Therapy 4/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Prophylactic ovary removal Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 13, 2019 05:19PM Boobicles wrote:

thank you moderators. I’ll update you on Thursday once I know what’s what.

Thank you Valentine214 for your reply. I’m taking Valium (similar to Xanax) as otherwise I wouldn’t be able to Cope one bit. Yes we have social services here too and they should be able to provide me with help once I know treatment plan. I’ve been in contact with them already. One of my friends will be coming to hospital with me on Thursday and my other friend will be watching the kids in the meantime. I’m so grateful for their help. Thanks also for offering me to DM you, that’s very kind. I really do hope my back pain is simply psychosomatic and that nothing sinister is hiding behind it.

Thanks BAP. I wonder whether he guessed the staging from the size of the tumor? He said the Pathologist and oncologist will go over everything in a meeting on Thursday morning. I really should have asked for verification though.I’m so happy that you’re NED. I hope you’ll be for many many years to come.

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Aug 13, 2019 05:49PM Missmom79 wrote:

are you NED you said?

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Aug 13, 2019 05:51PM Boobicles wrote:

B-A-P is NED - not me.

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Aug 13, 2019 05:55PM Missmom79 wrote:

a radiologist can tell you the stage by looking at your mamo and ultrasound? I’m confused ? I thought they had to do a pet scan for that and all that. They said I had IBC yesterday and without a biopsy. They just did the biopsy today.

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Aug 13, 2019 05:57PM Missmom79 wrote:

so many questions, ughh my head is spinning.

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Aug 13, 2019 06:15PM Beesie wrote:

A Radiologist cannot diagnose based on imaging. He/she might feel that that the imaging indicates the presence of cancer, but there is always a chance that the assessment is wrong. A diagnosis of cancer can only be made from a biopsy, when the suspicious breast has been examined under a microscope and the presence of cancer cells has been confirmed.

Staging most certainly cannot be determined from imaging. Imaging might suggest that the tumor is a certain size, but the size could easily be larger or smaller - that happens a lot. And imaging might indicate positive nodes or negative nodes, but here again could easily be wrong. A Radiologist should never offer an opinion on Staging based on imaging because they really have no idea at all what the final pathology will find or not find.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 13, 2019 06:57PM Boobicles wrote:

hi beesie,

It’s not a radiologist who did the ultrasound. It’s the consultant surgeon who did


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Aug 13, 2019 07:14PM Missmom79 wrote:

BAP your cancer was matastized but you are now NED

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Aug 13, 2019 10:53PM PhoenixCruiser wrote:

Add me to the list of confused and doubtful people that you were diagnosed with a "consulted surgeon".

Were you provided with a written statement of your US?

Dx 8/2017, Right, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel) Radiation Therapy Surgery Lumpectomy: Right
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Aug 14, 2019 12:23AM Beesie wrote:

Boobicles,

There is Clinical Staging and Pathological Staging. Clinical staging is done based on pathology results and imaging. Pathological staging is based on the surgical pathology.

Clinical staging i relevant in situations where, based on the Clinical Stage, it's determined that chemo will be given prior to surgery. In those cases, the Pathological Stage might be difficult to assess because the chemo has hopefully reduced the size of the tumor.

In other situations, when surgery is done prior to any other treatment, the Pathological Stage is most accurate and most relevant and overrides the Clinical stage.

The Clinical Stage is in effect an estimate based on limited information; the Pathological Stage is the final determination based on all the information. From my own experience and from what I've seen on this board, most often surgeons don't get into staging, clinical or otherwise, and leave that to the Medical Oncologist.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 14, 2019 03:28PM Tmh0921 wrote:

I had a 3D mammogram, an ultrasound, a breast MRI, and core biopsy, and my oncologist still wouldn’t stage me until after my mastectomy. I point blank asked her what stage my current diagnosis was, and she said most likely stage 1 or 2, but we will not be able to say until the final pathology where we can confirm size and node status.

She was right not to stage me, my tumor was actually bigger than imaging indicated, luckily the nodes were negative, so I’m stage IIA.

I asked my oncologist when to be concerned about new “symptoms”, I.e. aches and pains, etc. He said that if I have symptoms that persist for more than two weeks without resolution or improvement, to come see him. Otherwise, try not to worry, we cancer patients still get normal aches and pains, and colds, etc.

Telling us not to worry is much easier said than done though, isn’t it? I hope you get more definitive results and a plan of action soon

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/14 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/31/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/5/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 15, 2019 08:37AM mom2bunky wrote:

Thinking of you today Boobicles.....

Dx at 55. KI-67: 18. Oncotype: 24 Dx 3/26/2019, DCIS/IDC, Right, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 5/9/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/25/2019 Whole-breast: Breast Hormonal Therapy 8/5/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 15, 2019 01:37PM Boobicles wrote:

Thanks for the explanation Beesie and thanks everyone for your comments and for thinking of me.

So the pathologist, consultant breast surgeon, oncologist and everyone else who’s involved in my care had their meeting this morning. The results are that it’s early stage Idc and so far they’re going off a stage 2. The lymph node they’ve biopsied is unfortunately involved. So they’ll do a bone and ct scan which should happen in 2 weeks time at the latest. I pray to god they don’t find anything else on my body. So does that mean they’ll only be able to tell me my actual staging after the scans or only after the lumpectomy? Does everyone only ever get a staging after a surgery and never before

After the last scan I’ll have an appointment with the oncologist who’ll then say when exactly my treatment will start. They’ll definitely start with chemo first and they’re looking to start in 3 weeks. They told me the two drugs they’ll be treating me with (Pertuzumab and trastuzumab). They’ll do the lumpectomy after chemo.

I hope i don’t have to wait the full 2 weeks for a scan and i pray they don’t find anything else on it. This waiting is torture. I’m still imagining the worst possible outcome. I don’t know how anyone is able to deal with this amount of anxiety.

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Aug 15, 2019 04:24PM PiperKay wrote:

Hi Boobicles,

I'm so sorry you're going through this. As anyone can tell you, not knowing is the worst. You're sort of floating out there with nothing to anchor you. While you wait, though, I highly recommend reading through the main site of https://www.breastcancer.org/ It's got tons and tons of basic information about diagnosis, staging, treatment, and all that stuff. I read practically the whole site while I waited between getting the initial diagnosis of IDC and seeing the breast surgeon when I got the full pathology report after biopsy. By then I had a lot of questions I knew to ask the surgeon and felt quite prepared to evaluate what she told me. That was very comforting to me. I'm hopeful that it can be for you.

Hoping for the best news for you!

Anne

Dx 11/2018, IDC, Right, <1cm, Stage IB, Grade 3, 0/7 nodes, ER-/PR-, HER2- (FISH) Surgery 12/10/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 1/17/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/24/2019 Whole-breast: Breast
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Aug 15, 2019 04:39PM Boobicles wrote:

thanks so much Piper for your encouraging words. I shall have a read and hope it will reassure me a bit.

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Aug 15, 2019 06:20PM - edited Aug 15, 2019 06:20PM by mom2bunky

I'm sorry Boobicles, this time is the worst. I agree with Piper, I spent this time reading anything I could get my hands on and getting educated. In addition to this site, I recommend The Breast Book by Dr. Susan Love and Just Get Me Through This by Deborah Cohen. Also excellent is Anti-Cancer by Dr Servan-Schreiber. The smarter you get, the more in control you feel

Dx at 55. KI-67: 18. Oncotype: 24 Dx 3/26/2019, DCIS/IDC, Right, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 5/9/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/25/2019 Whole-breast: Breast Hormonal Therapy 8/5/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 15, 2019 06:28PM Boobicles wrote:

thanks so much mom2bunky I shall have a look for those books and hope they’ll help me toget me through this horrible time.

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Aug 16, 2019 06:05PM beach2beach wrote:

Hi,


So sorry you had to join us but glad you found us. You will get through this once all is in place and come out the other side. Take care of yourself during this time too...talk, don't talk, cry, laugh, whatever helps you through. It sucks for sure..but you do eventually think of more of the day to day things than what you went through. A little at a time. Hugs..

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 17, 2019 11:33AM Sassa wrote:

Boobicles,

From the drugs they have mentioned to you, I take it that you are HER-2 positive.

For those of us that are HER2 positive, they are truly miracle drugs and highly effective in eliminating any cancer cell floating around the body.

I am thirteen years out from diagnosis. I am NED.

Dx 11/6/2006, IDC, 1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2+
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Aug 17, 2019 04:01PM Beesy_The_Other_One wrote:

Boobicles, Sassa is right that Herceptin and Perjeta are miracle drugs for those of us with HER2+ tumors. Some of the women who were literally near death when they were given the trial drug Herceptin (Trastuzumab) are still alive, and this was over 25 years ago. My MO treats one of the women in the Phase II trial who was considered to be hours away from death and here she is alive after all these years. Now, that's a miracle drug. I tell you all this because you have reason to have good hope for yourself AND for those four children you love! Boobicles, miracle drugs or not, I wish you had never found yourself here.

Sassa, thank you for stopping by to remind the rest of us who aren't that much farther ahead than Boobicles that we all took that same miracle drug (finished my last Herceptin Wednesday). Thirteen years and NED is wonderful!

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx coming. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Aug 17, 2019 06:10PM Sassa wrote:

You're welcome.

I stop in on occasion to see if I can talk a newbie down off the ledge.


Just knowing that treatment works can help.

Dx 11/6/2006, IDC, 1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2+

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