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Topic: Symptoms and a second opinion

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: Jul 9, 2021 01:07PM

Llama44 wrote:

Hello all, I am a 44 year old mother of 4. I never breastfed. Last Saturday I noticed what looked like a few bug bites on both the inner part of my right breast and the outer part of my right breast near the armpit. I also have some nipple discoloration, a heavy feeling in that breast, some itching and pain. I went to the dermatologist on July 6 to get a full body skin check because I am also being checked for a recurring melanoma. She gave me a steroid cream but the rash hasn't gone away. I am also seeing a gynecologist who did blood work for pelvic pain and my Cancer Antigen 125 is also high. I went to my PCP this morning and she gave me an antihistamine and Tylenol. When she checked my lymphnodes they were enlarged by my clavicle. I also had my 6 month Mammo and U/S today. The radiologist says she didn't see anything worrisome and I have some cysts. When I mentioned the rash and other symptoms she just blew me off and said to keep seeing the derm doc and the PCP. I feel like I need a second opinion but being active duty Army it may be difficult to see a civilian doctor. Has anyone else had these symptoms and do you think I should definitely get a second opinion. Thank you for listening, I am a nervous wreck!

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Jul 12, 2021 01:05PM LW422 wrote:

Hello Llama44. I can only say that for myself, I'd definitely get a second opinion and preferably from a breast specialist or a cancer center. My IBC symptoms were not similar to yours, but there are many different "presentations" so it's hard to compare. IBC is rare, so chances are good that you don't have it. My best wishes to you for a good outcome.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/9/2021 Taxol (paclitaxel) Chemotherapy 5/18/2021 AC
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Jul 13, 2021 09:27AM Llama44 wrote:

Thank you all that have responded so far. As of right now I have to have an excision on a mole that is typical for Melanoma. I have had Melanoma before so I am very anxious about this. I am going to see how I can get a referral to see a civilian care team. I am not happy with the care the military is giving me. Everything takes so long. I found out about the Melanoma yesterday and I don't get the excision for another 2 weeks. It is so frustrating. I thought the rash was getting better but it seems to be making a reappearance. I am still having breast pain and I also have pelvic pain that has been going on for over a month now and I do not get a pelvic U/S until the 26th of this month. My CA 125 went down slightly but is still elevated so I will probably have to have that blood test again. I am so worried that there is more going on in my body than the tests are showing. Thank you all for the reassurances so far.

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Jul 13, 2021 12:36PM PiperKay wrote:

Certainly you have a lot going on to make you worry. And each additional worry makes the next thing even easier to worry about, especially when those tests are so far down the line. But like LW422 says, it's far more likely that you don't have breast cancer than that you do. So let's hope for the best!

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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Jul 13, 2021 01:15PM Llama44 wrote:

I received my U/S report today and I am not happy. First of all it is so confusing because from the research I have done complex cysts should be biopsied but the Radiologist didn't even use the term complex, she just said I have cysts and left it at that. I wanted to post my results to the forum but I cannot find the correct one to post for DJMammo. If anyone could point me in the right direction that would be great. I think I have decided that I definitely want a second opinion. The rash is getting redder again and I still have pain. My reports are also talking about enlarged lymph nodes as well. The frustration is REAL!!!

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Jul 14, 2021 02:57PM Llama44 wrote:

Since I read a post saying DJMammo is unavailable, maybe someone can help me with this U/S Report.

Right Breast:

There is a well-circumscribed hypoechoic nodule in the 9:00 position 4 to 5 cm from nipple measuring 7x5x8 mm with a biopsy clip in it. There is a similar well-circumscribed hypoechoic nodule in the 12:00 position 3 to 4 cm from the nipple measuring 5x3x7 mm with a possible biopsy clip adjacent to it. There is a well-circumscribed similar in appearance hypoechoic nodule in the 11:00 position 1 cm from the nipple measuring 9x3x10 mm, this appears stable compared to the prior breast ultrasound 10/07/13. There is a mildly complex cyst in the 11:00 position 4 to 5 cm from the nipple measuring 11x7x8 mm. There is a typically benign-appearing well-circumscribed hypoechoic right axillary lymph node with echogenic center measuring 2.2x1.1x1.8 cm.

Left Breast:

There are 2 cysts in the left breast in the area of palpable concern. The largest is a mildly complex cyst measuring 1.7x3.3x3.4 cm in the 1:00 position 4 to 5 cm from the nipple. There is a second smaller complex cyst in the 1:30 position 4 to 5 cm from the nipple measuring 1.3x0.8x0.9 cm and a third cyst in the 11:30 position 4 to 5 cm from the nipple measuring 1.5x0.7x1.2 cm. No suspicious left left axillary adenopathy.

I am very concerned about the complex cysts. From everything I have read complex cysts should be biopsied. Also from comparing my past reports, they have gotten larger. I am also concerned about the enlarged lymph node in the axillary. I have supraclavicular enlarged lymph nodes as well. The rash is still there and the pain. I am having some itching as well. The steroid cream did not work on the rash. I believe my Radiologist is blowing me off. I am working on getting a second opinion, but any thoughts would be very helpful. Thank you for taking the time.

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Jul 19, 2021 12:04PM Llama44 wrote:

So, new development, I have found a new lump above where the rash is. It is hard and does not move around. The skin seems to move around it but it is stationary. The rash has lessened but is still there. I have also developed a stabbing, throbbing pain behind my nipple. I made another appointment with my PCP but that is not until the 29th. UGH!

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Jul 19, 2021 04:51PM ARmom4 wrote:

Since you have an ongoing battle with melanoma, you should be able to, at the very least, demand a PET scan. You need some answers!

Diagnosed age 35. ATM gene mutation.Severe reaction to Taxol and Taxotere. Just Tamoxifen now Dx 1/3/2020, DCIS/IDC, Right, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (DUAL) Surgery 2/11/2020 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Targeted Therapy 3/27/2020 Herceptin (trastuzumab) Chemotherapy 3/27/2020 Taxol (paclitaxel) Chemotherapy 4/17/2020 Taxotere (docetaxel) Hormonal Therapy 5/29/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 7/1/2020 Prophylactic ovary removal Surgery 3/3/2021 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/8/2021 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 19, 2021 05:10PM Llama44 wrote:

Thanks for the response ARmom4. I was able to move my appointment up to a telephonic tomorrow with a different doctor. I definitely need answers. I just had the U/S on July 9 and I do not recall them actually doing the test on the entire breast, just the parts where there are known masses. The cysts and the fibroadenomas that have clips. I didn't notice this new lump until last night. I have so much medical mystery going on I have no idea what to do.

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Jul 21, 2021 10:03AM Llama44 wrote:

Update. Went from phone visit with doctor to office visit. New lump felt by her. She said it might be another cyst. She gave me a referral for the Breast Clinic. Progress being made I guess. She said she wants them to take over since there is a lot going on in both my breasts. I told her the complex cysts needed to be aspirated and she agreed. She said the Breast Clinic will probably want to do that. She also said she was worried about the enlarged axillary lymph node and didn't know why the radiologist didn't even tell me about it. I am so frustrated at this point I don't know what to think. Any of you wonderful people have any suggestions on what I should ask at the breast clinic? Any advice would be greatly appreciated. Thank you.

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Jul 21, 2021 08:44PM NatureYogi wrote:

When do you go to breast clinic? I know it can be frustrating, you have to be your own advocate, that's for sure! The fact that you have enlarged lymph nodes and also supraclavicular nodes, with rashes, etc you need some tests done and a breast specialist. I hope at the clinic they will be able to get a biopsy of your lymph nodes. Waiting for appointments and tests can be nerve wracking, I know it is stressful, but try and relax. Please keep us posted and hang in there!

Dx 2/11/2021, IBC, Right, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 3/10/2021 AC + T (Taxol) Surgery 7/23/2021 Lymph node removal: Right; Mastectomy: Right
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Jul 22, 2021 11:08AM Llama44 wrote:

Thanks for the reply NatureYogi. I am waiting on the referral to be put in. Once it gets approved hopefully I can get in quickly. I appreciate the kind response. I am seeing a therapist for some anxiety so she has been a help in giving me ways to manage the stress of waiting and not having any answers. My husband always wants to tell me I am probably fine, and I probably am, but I do not think I am alone when it comes to the sensitive areas of a woman's body, we tend to be extra nervous!

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Jul 22, 2021 03:29PM Llama44 wrote:

Update. I got my referral for the breast clinic. Only frustrating part is it isn't until August 26th. I will definitely be calling them often to try and move it up. I am hoping if there are any cancellations I will be able to get in sooner!

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