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Topic: I feel like I'm in a neverending nightmare.

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Nov 29, 2021 08:08AM - edited Nov 29, 2021 08:11AM by Kipani

Kipani wrote:

Hi everyone back in July my left breast grew in size overnight. It felt like milk coming in like when you have babies. It never went back down.

I called my family doctor and without even telling me to come in and see him he told be it was hormones.

I went to the walk in clinic because I was worried. The walk-in doctor noticed a rash on my arm he called petechiae (he pronounced it wrong!) and told me to follow up with my family doctor.

So i went and made an appointment with a female doctor knowing my GP wouldn't listen. She referred me for an urgent ultrasound - clear but she didn't seem to believe me about the rash the walk-in doctor was concerned about because I pronounced petechiae wrong.


A month passed and the lymph nodes in my neck began to swell and i got whiplash feelings along my collarbone.

Due to the extreme anxiety i was having i went to the ER. I told them I think i have inflammatory breast cancer. They did a breast exam, arms above my head, hands on hips leaning forward and checked my lymph nodes and said they didn't see any size difference but I knew my body best. They said from the ultrasound they think I don't have inflammatory breast cancer but because of the lymph nodes they told me to see my family doctor the next day. It was a just in case scenario.

It had been about 3 weeks and the lymph nodes didn't go away so i scheduled a wellness check with my family doctor because I wanted him to feel for himself that they were swollen as I was about to get my first COVID shot and I didn't want him to think it was from that.

He completely missed the one on my neck but found the one on the left collarbone swollen. Once again I was sent away and told I'm good to go.

I went to the walk-in again, got a different doctor who sent me for blood tests to check for lymphoma. I went in to see my family doctor to get the results. This time he brought in a medical student who did an exam on my lymph nodes when i told him what was going on. My GP waited outside. The medical student found my lymph nodes were swollen with the exam and my GP came in and did an exam too, he was very frustrated with me and told me that they were all normal. The ultrasound was clear except for a small cyst. The medical student was like 😮

He said the blood tests were all normal. At this point any faith I had in him was shattered. I begged for a biopsy. He said there's nothing to biopsy.


From then on I started asking for only female doctors when I made my appointments. I got one and I told her everything and she checked me over and made me do a breast exam. Hands on hips, above head, it was a proper exam to check for asymmetry! Finally!!

She said yes, she could see that they were different sizes. (The left had grown a tiny bit more by then) She checked my lymph nodes and sat and tried to think of the next step. I told her an MRI would be the next step. She said that's a problem because our city doesn't have an MRI. But I should be relieved because the ultrasound is clear.

After that I made another appointment and then another and another, all with different doctors all with the same results. At this point they began treating me like a mental patient. I showed them the now obvious asymmetry and they ALL laughed it off and said "everyone has a little asymmetry"


Then my breast began to ache/burn. I pinched the nipple and white stuff came out. I made another appointment. This time I made my husband come because nobody would believe me or listen to me. My husband told them that my breast grew and ached and asked the Dr why. His explanation? He said the cyst was filling and popping over and over again. I asked for a biopsy and he told me there's nothing to biopsy.


I made another appointment with my GP and begged him for a diagnostic mammogram to check for asymmetry. The radiologist spotted swollen lymph nodes under my armpit but wasn't concerned with them because they had a fatty exterior. Results - extremely dense but otherwise fine. They guessed it was probably the COVID shot. No asymmetry.

By this time I had a painful, enlarged breast with lymph nodes swollen in my neck, collarbone and under the armpit.

I went in again, this time crying and begging my family doctor to help me. I showed him on moffit cancer centers website that IBC doesn't usually show up on mammogram or ultrasound. He got pissed off at me. Said he went to medical school and people like me shouldn't ever go on the internet. Gave me a prescription for antianxiety meds and antipsychotics and a referral to a psychiatrist. Mentally this made me feel good because I'd rather be crazy than have cancer. Unfortunately this didn't last long.


A few weeks later I noticed a burning sensation in the OTHER breast. It had gotten veiny at the nipple so i don't know.. i pinched the nipple. Sticky yellow stuff came out. I pinched it again. More sticky yellow stuff. I thought finally, they'll believe me!! I went up my family doctor and showed him the left breast with the white stuff and the sticky yellow stuff in the right breast.


He said it's milk and it's old milk. I told him my nipples never did that before. He shrugged. Raised my prescriptions lol. He told me my lymph nodes once swollen would never go down. He said the lymph nodes above the collarbone had nothing to do with the breasts. I think he was trying to ease my anxiety but it just made it worse.

I went to the walk-in again got another doctor and told her everything happening and I'm just crying my eyes out. She left the room, called my family doctor and printed my results out. she came back and told me it's just anxiety and sent me away. No exam nothing.

My right armpit hurts now and I have another appointment tomorrow. With a different doctor. Even my husband is frustrated with me and he's supposed to be on my team.

Please keep me in your thoughts.


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Nov 29, 2021 09:38AM exbrnxgrl wrote:

kipani,

Your frustration and anxiety are clearly creating emotional stress. I didn’t count but you have been to many appointments with quite a few different doctors. I don’t remember if you have seen a dermatologist but if you have a rash that might be something to look at. Regardless, seeing a therapist or psychiatrist may help you cope with the anxiety and keep things in perspective. Take care.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Nov 29, 2021 10:55AM - edited Nov 29, 2021 05:45PM by Waves2Stars

I would hate to minimize your fears in any way because medical mistakes do happen. BUT, I have had the engorged and leaking breast thing off and on many years past breastfeeding. It's because of prolactin levels, elevated estrogen, and even low thyroid can cause prolactin to raise enough to cause those symptoms. That may be a different avenue for you to explore. Please quit “checking" your nipples for discharge!!! First of all, by doing so, you are asking your glands to continue producing fluids! Second, if it is something nefarious, why keep expressing it, causing it to travel through the ducts!

I hope you find answers and peace!

DX @ 47. IDC 2.1 cm, DCIS 2.8 cm, Luminal B Dx 7/19/2021, IDC, Left, 2cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 9/2021, DCIS, Left, 2cm, Stage 0, Grade 2, ER+ Surgery 9/1/2021 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Stacked DIEP flap Hormonal Therapy 9/20/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 29, 2021 02:22PM Kipani wrote:

I don't have a rash. The only skin changes i got was a new stretch mark under my breast the night it grew. So basically Just breast growth, pain and swollen lymph nodes. My prolactin levels are fine i had CBC and horomones checked and I don't pinch my nipple all the time but I'll stop completely!


Today's visit went well!! It was a female doctor and we just talked. I told her everything that was going on and she told me she's going to push for a biopsy which every single other doctor refused to do because I have no skin changes. She then asked me the names of the other doctors I've seen and wrote them down (???)


I told her I'm concerned because i know IBC doesn't always show up on mammogram and ultrasound and she said she knows that. All the other doctors, except the one who told me we don't have MRI in the city, couldn't help me and none of them knew that. She's going to try to get me an incisional biopsy. I asked for a CT with contrast or that and she's going to call me later today.

I'm so sorry to vent but one day i think someone out there who might be going through something similar might want to read about this absolute nightmare I'm going through so they know they're not alone.

5 months. 4 of them I've had multiple swollen lymph nodes.

15 or so doctors. I live in a small hick city.



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Nov 29, 2021 02:47PM AliceBastable wrote:

What city are you in that doesn't even have an MRI anywhere? And did you report your GP for prescribing an anti-psychotic med for you? I've never heard of any doctor prescribing an anti-psychotic without a full psychiatric workup by a qualified psychiatrist. How old are you? Can you just go to a breast health center for a mammogram and to make an appointment with a breast specialist (this is easier if you're over 40 or 45). If you look through the threads here, you will find many, many started by women who were absolutely sure they had IBC because Dr. Google told them that's what it was, when it's actually extremely rare. From what I've seen here, a half year with untreated IBC wouldn't be likely anyway. Good luck on getting your anxiety under control and then getting any health issue treated.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Nov 29, 2021 08:33PM Kipani wrote:

I'm 37. I live in prince George, British Columbia. I agreed to see the psychiatrist because he put in a referral for that as well but my GP was just allowed to give me the meds. 100mg sertraline and 50mg Seroquel. The breast centers here will not do imaging without a doctor's referral. He said I can have another in January but since nothing showed up he doesn't think it's necessary. I've tried to go to the cancer center in town too but they told me i need to have been referred to by my family doctor or they can't help me. I've asked for a referral to a breast specialist but was only given the imaging.






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Nov 29, 2021 11:22PM ShetlandPony wrote:

Kipani, you might try posting in the Not Diagnosed But Worried forum, with the words British Columbia in the title of your thread. That way you might get some specific advice on how to navigate your health care system.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Nov 30, 2021 12:42AM moth wrote:

I'm in BC. In BC you cannot self refer for mammography until 40. I have other leads on breast health here in the Lower Mainland but it's trickier in PG.



I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External: Chest wall Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Nov 30, 2021 01:58PM MinusTwo wrote:

Kipani - After all these appointments, I think you need to settle on one doc and start learning to trust one another. The news that your GP has offered more imaging in January even though he thinks it's unnecessary is good. Then take let the anti-anxiety meds do their work. In the mean time - you need to move away from thoughts of breast cancer & maybe even take a break from this site. Hope you can find things to distract you through the holidays.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Nov 30, 2021 06:01PM - edited Nov 30, 2021 06:23PM by Kipani

Update. The doctor I spoke to came through. Unfortunately she can't perform a biopsy because there's no skin changes. But she spoke with my family doctor and got through to him!! He didn't know that IBC didn't show up on ultrasound or mammogram and wasnt listening to me because what does a patient know, he's the one who went to medical school - but he listened to her. Doctors here are always in contact with one another so if you have a family doctor but you're seeing another doctor, they'll talk to your family doctor too, to communicate. I suspect My family doctor was telling every doctor I saw that I just had anxiety so they didn't take me seriously but now he knows. They made a referral for me to get an MRI in Vancouver after the new year.

I'm in tears. I've been fighting for 5 full months. Thank you everybody for your suggestions, your support and your help. I'll post in the proper forum from now on. See you all in January.

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Nov 30, 2021 06:40PM moth wrote:

If you're coming down to Vancouver try to get a referral to see Dr Rhonda Jantzen at Breast Health Clinic in Surrey. She's excellent. Breast health is pretty much all she does. She really knows what she's looking at, kwim? Your doctor would have to fill out the referral. Probably best to see her after your MRI results are posted http://medicalstaff.fraserhealth.ca/getattachment/...


I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External: Chest wall Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone

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