Long wait for biopsy results
Comments
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That is soooo unfortunate on both counts! You definitely have no control over the discordant portion. I'm not sure how things work in Canada though in the U.S. it is not unusual for people to call docs' offices after a reasonable waiting period just to see if results are in yet - I call it a "prompt" just in case something has been sitting on someone's desk too long.... esp. those things providers won't allow in the portal until they or a nurse speaks to the patient.
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My paperwork says to call if I haven't heard anything after 7 to 10 business days. So that means Monday to Wednesday of next week.
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I found it helpful to do some REALLY distracting things. I had my biopsy on a Wednesday and went to a very loud, very lively concert the next night, and just kept doing as many fun things as possible. I kept that up between surgeries and further tests (it was a messy year) for the six-month medical adventure.
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I would love to keep busy and distract myself but I'm in isolation until next Thursday because I left the territory for the biopsy. Which means I dont have my four kids, can't go to clinicals or lab (I'm in nursing school) and I'm alone in a 5 bedroom apartment with just my thoughts about this biopsy and my divorce. It has been the worst year of my life and covid has made it so that I am alone during the hardest parts.
It's really hard to not think about the what ifs. If it is not benign, I would probably have to travel again because there is no MRI in this territory and no radiology therapy. That means I might have to leave school and I live in student family residence so I'd lose my home and my scholarships and student loans that are my income. And be away from my kids a lot.
It's just wearing me down to worry about this for as long as I have.
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I did go out for a 90 minute walk today even though it was -31 C and I also completed an assignment for school. I am doing stuff
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I woke up to a call from someone in the general surgery department saying that the surgeon that has been overseeing all of this needs to follow up with me in person this week. However, the person who called me said she didn't have my file or anything and asked me what the follow up was for. Felt very disorganized.
This is a very busy general surgeon who from what I have seen, does a lot of amazing GI surgeries. Great surgeon. However if my biopsy isn't benign, I will ask to be treated in Edmonton.
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I'm still following your story. Hang in there. Sounds like some progress is being made & you might get results soon.
If it's not benign - & let's still hope it is! - Alberta has cancer care centers in most major cities. FWIW, ime with provincial health care, they're all on the same script. They have province wide tumor board meetings, all the protocols are province wide approved and any deviation from a protocol would require approval from someone very high up in Cancer Care. I would only switch cities if there was a machine they had in 1 place & not in another (some of the radiation treatment machines are not the same everywhere) or if there was a clinical trial that you wanted to participate in. Otherwise, go where you have support and a network and feel comfortable. I did hear Alberta had a loss of physicians this summer after some budget cutbacks so that is no doubt adding to the chaos & increasing the workloads for whoever is left.btw, I was 1/2 way through my BSN when I got my stage 4 dx. I feel ya. I'm still bitter at having to give us school. I hope yours turns out to be a huge mistake and soon you'll be back home & studying & making drug cards late at night for clinical the next day
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So still waiting though a step closer.... I appreciate you checking back in. So you were actually able to schedule an appointment for this week then? You will know soon then. moth that was such a heartfelt response to Redcanoe!!!! I could really feel your heart in that.....
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Thank you both for your responses!
Moth- I do not live in alberta, I live in one of the territories. We don't have radiology here at all or a cancer centre. I know they do lumpectomy and mastectomy surgeries here but the surgeon that would do it would be a general surgeon who doesn't just do breast surgeries. They also have limited chemotherapy services here. I am worried that benign or not, I might need surgery and I dont really want it here. I'm only 34 and would want someone less general to do my surgery, should I need one. Everything that cant be done here is done in Edmonton but there are some things that CAN be done here but I would feel better having done in a major city. Edmonton is the closest major city.
I know I am getting ahead of myself but I do expect that even if my results are benign, I might be facing surgical excision.
It is so unfair you had to leave your BSN program. I know how hard the work is. Thank you for taking the time to reply to me.
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It is cancer. Invasive ductal carcinoma. Triple positive. Estimated to be less than 2 cms and lymph nodes do not look suspicious on imaging. So could be stage 1 but won't know until surgery which will be within the next two weeks. Being sent for genetic testing cause I am only 34. Surgery is breast conserving surgery followed by radiation with a sentinel lymph node biopsy. I may not need chemo.
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Redcanoe, I'm sorry.
If it's triple positive, meaning ER+/PR+ and HER2+, chemo will be recommended. HER2+ cancers are very aggressive and chemo is always recommended even for very small tumors. The good news is that thanks to chemo and Herceptin, a drug specifically HER2+ cancers, with this treatment, triple positive cancers have among the best prognosis.
Who provided you with the treatment plan? Usually with HER2+ cancers, a Medical Oncologist is involved right away, prior to surgery.
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I'm so sorry to see your news, redcanoe. I am sending you a virtual hug. This is tough.
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oh redcanoe, big hugs. I'm sorry to hear this. Hang in there. As Beesie says, triple + has good prognosis. Due to your age & the HER2+, I would definitely expect chemo. Good for you for getting this checked & going through all the travel etc to get it properly tested.
hugs
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The surgeon i spoke with today isn't the doctor that will be treating me. I'll meet him tomorrow.
The only plus of the long wait is that they already thoroughly reviewed and have somewhat of a plan of action.
My second call was to my faculty advisor at school. Its a small school and the instructors are seeing what they can do.
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Redcanoe - So sorry t hear your news. Do get an MO (medical oncologist) involved right away. Surgeons cut - that's what they're trained to do. The MO usually drives the bus.
Agreed with all above HER2+ means chemo. And usually neoadjuvant chemo - so chemo before surgery. They like to shrink the tumor & kill as much as possible before surgery.
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also im not sure this is super relevant but there is dcis too. I know the diagnosis is the more serious pathology but I have both.
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Since IDC develops from DCIS, it's very common to have IDC and DCIS together. The DCIS needs to be surgically removed but can otherwise be ignored - anything done to treat the IDC will be more than enough for the DCIS.
To MinusTwo's comment, the NCCN Treatment Guidelines, which are pretty much the gold standard, recommend neoadjuvant chemo for HER2+ cancers when the cancer is 2cm or larger in size or if there are positive nodes. I'm sure that sometimes MOs decide to go with neoadjuvant chemo in situations that don't meet the criteria but are close.
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Mine appears to be less than 2 cms and my lymph nodes look unaffected.
I'm having an MRI before the surgery.
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I don't have anything to add except offering moral support!
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I ditto Alice's post... Wishing you well and thanks for keeping us in the loop! You can do this!
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Best wishes! It's been a long wait for you. I'll be keeping you in my thoughts.
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