had IDC in 2019, now surgeon is sending me to a hematologist

Anonymous

had IDC in 2019, now surgeon is sending me to a hematologist

tovahsmom

I have developed an atypical vascular lesion on my radiated breast. Dr. Google tells me this is a rare development as a result of radiation. Now the surgeon who did my biopsy (I am two years out of being diagnosed with IDC with lymph node involvement), is sending me to a hematologist.

Has this happened to anyone here? I have to wait until August 2nd to speak to him again. I do not know what is going on. Has being referred to a hematologist happened to anyone?

Thanks,

Patricia

moth

Hi Patricia, do you have access through an online portal to your most recent bloodwork? A referall to hematology might be based on blood work or scan results so if you can see those reports it might indicate what it is that they want to investigate further.

tovahsmom

Thank you, Moth, for writing. My most recent blood results are normal. My most recent biopsy was abnormal. I believe I am facing more surgery according to what I've read on Dr. Google, but have to wait to see the surgeon on the 2nd to learn anything about my latest condition. The waiting is so hard! In the meantime, he wants me to see a hematologist. I wish I knew why. Was wondering if anyone else has had to see a hematologist based on a diagnosis of atypical vascular lesion of the breast.

I appreciate your writing, Moth. Thank you.

Patricia

tovahsmom

Dear JO-5,

Thank you so much for writing! I am so sorry to hear about your angiosarcoma. I am so glad to see that you are still here 6 years after being diagnosed. What hospital are you being treated at? I am being treated at NYU Perlmutter Cancer Center and my doctor actually wrote a paper on atypical vascular lesions for the Journal of Clinical Oncology so I think I am in good hands. I have multiple lesions on and around my mastectomy scar and he picked the right one to biopsy as it came back as AVL. He is referring me to a hematologist to check my slides, I guess, to rule out angiosarcoma before he goes back in for an excisional biopsy. Unfortunately, I only know this through my reading on Google. I have yet to meet with my breast surgeon again to get more information until August 2nd, and I still don't have an appointment with the hematologist. The hematologist my breast surgeon is referring me to is referring me to another hematologist as the first hematologist is saying he does not specialize in that. This other hematologist doesn't start until August 1st so the waiting is killing me. I wish I knew what was going on. That's why I queried this community but you and I seem to be the only ones here with experience with radiation-induced benign and malignant lesions. I started another topic in the radiation thread called "atypical vascular lesion" and got 0 responses so this tells me this is indeed rare if no one here has any experience with it so I really appreciate your writing.

Can I ask you how you were discovered to have angiosarcoma? What did you present with? What happened next? I'm sure they did an excisional biopsy and did they get it all out? Are you being treated for both cancers now - the breast cancer and the angiosarcoma? Were you initially diagnosed with an AVL and then reclassified as angiosarcoma? Or was it angiosarcoma from the beginning? How many years out from breast cancer treatment were you diagnosed? I've had two bouts of breast cancer and two courses of radiation treatment on the same breast. My body had a tough time with the radiation and I developed brachial plexitis from it, but that is a different story. I recovered from that. But this - I have multiple lesions.

Any insights you can provide about next steps would be appreciated. I won't get any answers before August 2nd when I see both my breast surgeon and my medical oncologist. My doctor did not give me the results on my path report over the phone so has not spoken to me. I only got my results through the patient portal and then started to Google atypical vascular lesions. I read they have to do a complete excision to rule out angiosarcoma. That's pretty much all I know. I also don't know what the medical oncologist has to do with this but my breast surgeon wants me to see her again as well.

Thank you for writing and sharing with me.

Patricia

Rah2464

tovahsmom - our neighbor's sister has battled angiosarcoma. I believe her radiation treatments were also in early 2000. She has had great success with treatment at MD Anderson down in Houston. It sounds as though you have a very diligent team working with you, but I wanted to throw that out there. My very best to you.

tovahsmom

Dear Rah2464,

Thank you for writing. Hopefully, if I do have an excisional biopsy, it will rule out angiosarcoma, which has a very poor prognosis. Right now it's just a benign atypical vascular lesion. I wish your neighbor's sister well! I know angiosarcoma is a really bad cancer. My mother survived sarcoma herself. She was give 6 months to a year to live and that was 23 years ago! I wish the same for your neighbor's sister.

Thanks for writing.

Patricia

NorCalS

JO-5,

Thanks for sharing. The information you provided was very helpful

tovahsmom

Dear JO-5,

Thanks so much for sharing your story with me. This is mine:

I had DCIS in 2009, two lumpectomies, and radiation at that time. Ten years later, on same breast, I was diagnosed with IDC with spread to lymph nodes and had a mastectomy and radiation again. (Now I'm thinking that wasn't such a good idea). Two years out from radiation, I developed these lesions or papules or whatever they are called and I showed them to my breast surgeon on July 12th for my six-month check-up. He did a biopsy right in the office. Out of all the spots, he found the right one to biopsy. I received the path report through the patient portal two days later with the diagnosis of benign atypical vascular lesion. The next day the nurse called to say he wanted to see me sooner than the original follow-up and that I should also make an appointment with my medical oncologist. I do not know why though. Then three days later I get a call from the nurse again that he wants me to see a hematologist to read my slides. So now I'm worried! What is going on? And I have to wait until August 2nd to see these people and I can't get an appointment with the hematologist because he doesn't start until August 1st.

Ugh! I hate this waiting.

Thanks so much for sharing your story with me.

Here is a picture of before the biopsy and after the biopsy:

Rah2464

Patricia - hope you can push and get in to see someone earlier. Sounds like your breast surgeon is being extra thorough but that is definitely what we want. You could request a copy of your pathology report if it isn't available in a portal. Wishing you all the best, continued benign results. Please let us know how it goes. Hugs.

tovahsmom

Thank you Rah2464. Unfortunately, it will be impossible to see someone before the 2nd of August so I just have to wait nine more days to learn what is going on and to see whether I will need more surgery. Apparently, atypical vascular lesions are so rare that there is absolutely no information for the layperson available on Google. Not even on breastcancer.org. So everything I am reading is in medical journals via Google Scholar. All articles say standard treatment is a complete excisional biopsy. My breast surgeon actually wrote an article about atypical vascular lesions in the Journal of Clinical Oncology so I know I am in good hands.

My breast surgeon is really on top of things. In fact, I did a search for him on these boards and many have said fabulous things about him. I am being treated at NYU Perlmutter Cancer Center. And yes, I have a copy of the pathology report. It came to me through the patient portal. That is the only reason I know I have this.

Thanks for writing again,

Patricia

tovahsmom

Dear JO-5,

If I don't get to finish this, I will write some now, and then finish the rest when I can.

Thank you for looking at my pictures. The dark circle in the middle of the second picture is where my doctor did a shave biopsy. (I do not know what a punch biopsy is). So he took a little bit. The dark area around it is the bruising from the procedure. In the first picture, in the center, is a purple spot. That is the spot he biopsied. My partner thought this was just a pimple and I thought the three red dots were beauty marks that I just never knew were there because I had a breast there once. My doctor knew precisely which one out of all the ones to biopsy so kudos to him!

As far as the red-looking area. I've been sunburnt there from the radiation ever since I had my second bout of radiation two years ago. Completed 7.2.2019. My first bout of radiation was in late 2009, early 2010. Same breast. When I had my 6-month checkup on July 12th, I first showed the nurse and then the doctor, the spots. He asked how long they had been there. I said I first noticed them in April. I haven't called the surgeon's office to tell them how it is healing. I check the area every day and it looks like it is healing alright.

Everything I have read in the medical journals I have found points to excisional biopsy to get the whole area out so I am assuming this means more surgery for me, but not knowing until I see the doctor in nine days is killing me, and I first have to get an appointment with that hematologist to read my slides before he does the surgery. I am in grad school this summer so the timing is terrible. I took a hiatus from grad school in 2019 when I was diagnosed with IDC then, and here I go again. I was planning on finishing this degree this summer without any hiccups. Plus, my mother is having surgery which will require my care. She had uterine sarcoma in 1998, radiation of the area, which then put a hole in her bladder. She needs reconstructive surgery for this now and may have to put off her surgery until after I do mine. Based on what you have shared with me, (and I will discuss this with my doctors), I am wondering whether I ought to have the other breast removed. The thing is that it is healthy and I HATE to have unnecessary surgery. I will see what they say. Obviously, I had a rough time with the radiation.

As far as the biopsy report, it doesn't say anything about margins. And I don't know if the doctor gets a different report than the patient.

Thank you so much for your prayers! I very much believe in God and in Him walking with us through our trials on earth. Thank you again for sharing your story with me. I am so sorry that you got such a bad cancer after radiation. Based on what I've read, mastectomy does sound like it was the best course of treatment for you. I would have had a mastectomy if I had not already had one. My concern right now is how on earth I am going to heal as the skin is already so tight in that area. Plus it was irradiated twice so it's not as elastic as it would normally be. It is a question I will ask the doctor.

God be with you too, JO-5!

Thank you!

Patricia

tovahsmom

Dear JO-5,

Thanks for the explanation. I did not know that punch biopsy and core needle biopsy were the same things. I have had several biopsies of both breasts in the past - both FNA and CNB.

I see the doctor again in 7 days and will post what I learn after I see him.

Thanks so much for writing. Prayers for your continued good health.

Patricia