It's back.....

southernbelle77

Or did it never leave? I was just diagnosed on Thursday with a local recurrence.

I was diagnosed with IDC with lobular features June 22, 2018. I moved my care to a teaching hospital after a military hospital botched my excisional biopsy by leaving part of my tumor inside me. I had my bilateral mastectomy on Aug. 31, 2018 with tissue expanders placed. I had exchange Nov 6, 2018. A couple of weeks after the exchange I felt a tiny bump below my mastectomy incision and it felt different than any other parts of either breast. I brought it up & was told that it was just a stitch. I noticed in about the end Dec or early Jan it grew a little. I had previous appts with my medical oncologist and plastic surgeon in Feb so I just waited for those appts to bring it up. The PS said that he thought it was just an undissolved stitch that had scar tissue growing around it. MO said she thought it was part of my implant, but didn't know what it was. Both told me to come back if anything changed. A few weeks pass and it grew a lot and I could now see it pressing out from my skin. I contacted my MO with a picture and said that I wanted to know ASAP what exactly it was. She sent me to my PS & I had an appt with him 2 weeks from then. He still insisted it was just scar tissue. He said "I can remove it, but it will just come back because it's just scar tissue". No imaging was done and he said that I couldn't have a needle biopsy because it was too small and sitting on top of the implant so excision was my only option. I told him to do it. Reluctantly, he scheduled me for surgery 3 weeks from then. On Thursday I had a prescheduled post op and he scheduled it with his PA. She was supposed to just remove the stitches and place steri-strips. He told me he'd call me with the biopsy report. So I came to the appt alone thinking I didn't need anyone for something so simple. Well..... they decided she should tell me that day. BAD IDEA! Especially when you know the patient travels 1 1/2 hours one way to get to you!

He contacted me via phone later that day and said he wanted me back in surgery May 8th because my margins weren't clean (a common problem with IDC-L). He said he wanted to do a surgical consult with pathology this time and cut until the margins were clean. He also said he wanted to look under the implant for any additional tumors, remove my implant & place a smaller (my god they are already small!) tissue expander to prepare for radiation. His PA talked about a latissimus flap. Yeah right! Anyway... He argued that he should do the surgery instead of my oncology surgeon because he knew what it looked like and where it was (they left the permanent stitches in). I asked about a complete explant and he agreed to do it. He also had the first available date. I was supposed to hear from my surgical oncologist that day as well, but I didn't hear from her until Saturday. She was insisting on being there in the OR for the surgery. She said the problem was that she was going to be out of town May 8th. I would need to have my surgery pushed back a week, she needed to coordinate with his schedule on exactly when, but she was available May 14. She also said she was going to talk to my MO about placing me on stronger medication. That her biggest concern was that my cancer not only grew back on Tamoxifen, but FAST. It also came back more aggressive. Now it's grade 3 instead of grade 2. Hormones are still the same. She also said an explant wasn't necessary. That I would have 1/3 of my skin removed and the same amount for the scar capsule. I opted to have her in the OR because honestly, if he had listened to me in Feb this thing would have been smaller and MAYBE it wouldn't have had extensive vascular invasion. He claims it would have made no difference. Pfft... I don't trust him.

Then I get contacted by my MO yesterday and she said she wanted me in on Wednesday to start me on more intense endocrine therapy and that my OS wants a full body PET scan ASAP to check my nodes & see if it has spread in my body. She said she was going to try to book that for Wednesday as well. Still waiting to hear about that and what time on Wednesday she wants me there. When I asked her about chemo, she said I had a low onco before (11) and that she wanted to run it again on the new tumors. I honestly don't want to hear about onco. I HATE waiting.

I contacted MD Anderson on Friday and started the process of becoming a patient there. They told me to go forward with the surgery here to clean up the margins & then go there to see a team of theirs. I have also decided I'm going to have my treatment there as well. It will cost a fortune and be a burden, but I think it's the best thing now. I read that my cancer, IDC-L is rare. That it only makes up 5% of BC cases. Now that's supposed to be low grade, but mine was grade 2 and now it's grade 3. Add to it that Tamoxifen didn't work, I've recurred less than a year after a BMX (also rare) and I think I need the best people on the job. I don't think my doctors are being as aggressive as they should be. Last year I was only 40 when diagnosed, now 41. I hope to have a long life ahead of me and I don't want to be undertreated!

How likely is it that this has spread now that it's grade 3 with extensive vascular invasion? So far the size was 12mm one tumor and 1mm for a second that was under it. Gross tumor size was 1.2x0.8x0.4. 4.2cm was taken & I still didn't have clean margins.

Does anyone here have experience with MD Anderson? It's supposed to be the #1 cancer center in America.

Does anyone have any advice about any of this mess?

illimae

I was diagnosed at 41 and have been an MDA patient for 2.5 years. It’s busy and the wait times can be long but I’m comfortable here, feel free to ask me anything. And please know that it is possible to live pretty well at any stage.

Cowgirl13

So glad to hear you are going to MD Anderson. I have heard people rave about this place.

KBeee

So your situation is almost identical to mine. When mine returned, it came back right where the original tumor was. My MO (ex-MO) had previously blown me off and called me a worrier, BS sent me to PS...not because he did not take me seriously, but because he thought it was likely scar tissue. PS was 99% sure it was scar tissue. My very strong gut told me that it was cancer, so I asked him to be sure. He scheduled an excisional biopsy for that week. I got the call a few days later, form his nurse, that it was in fact a return of the cancer. Long story here about how I addressed it because our situations are so similar.

PS called BS and BS told him to have me come in that day. BS's nurse was supposed to schedule this, but instead, she decided his schedule was too full, and scheduled me 10 days from then. I had already ditched my MO and was seeing someone (since it was every 6 months) at a major medical clinic a couple hours away. I called them and they saw me a couple days later. I consulted with MO, RO, and BS there, and the information was very valuable. I liked them all except the MO, who very much minimized it.

Once I saw BS, he found out what his nurse did, apologized profusely (she retired a month later). I had to decide whether to do surgery locally or go a couple hours away. Ultimately, I decided for my PS and BS team to do it because they knew exactly where it was. PS came in very early that morning and marked me all up. He pointed out everything to BS. BS did the surgery. Since mine was between my pec muscle and my skin, they took out a chunk of the pec muscle, but did not have to change out the implant. PS was there in case they did, and had both implants and expanders on hand. They made sure they had clear margins. They also tried for sentinel node. This is not usually done with recurrences because there is often altered lymphatic flow, and they can be hard to find. Clinic I consulted with is doing research on it and recommended it...said they find it 50% of the time. My surgeon spoke to her and agreed to try. While they could not find the sentinel node, when he reached in manually, he felt what felt like a hard node and removed it. It looked like a hard node, and came back positive for cancer. 13 more were removed and were negative. Further pathology revealed it was in fact a second tumor in the soft tissue, not a node. Nevertheless, they got clear margins and burned it to hell with radiation. PET scan was clear. My new local MO did oncotype at my request, and it came back quite high, (which my gut said it would) so I did chemo again. Fast forward to today. To the best of my knowledge I am cancer free.

I am sorry you are dealing with this, and that your provides blew it off for so long. It sucks how hard we have to advocate for ourselves. I don't think that's the case with most other cancers.

PM me with ANY questions. You CAN do this!!!

southernbelle77

Thanks girls. KBee ours do sound similar. Mine recurred at the original tumor location as well. 5 o'clock between the skin & implant. Thankfully the implant capsule protected my muscles. I really wish that I had pushed harder in Feb to have it removed then, but I really wanted to believe it couldn't be cancer so soon after a BMX.

My BS said that it would be very unlikely for my nodes to have remapped so soon, but talked about doing a mapping prior to surgery with no plans to remove more. I don't know if she changed her mind & is going to go off the PET scan results instead because I haven't heard more about it at this time.

I was just called by the cancer center and my PET scan has been scheduled for tomorrow at 11 am & then I'm seeing the MO Wednesday at 10 am and they said I would have the results of the PET scan at that appt. I just have this horrible feeling that it's spread. I hope I'm just being paranoid. I think if she did run the onco again it would come back high. From what I've read since it's grade 3 tumors it will and the chances it won't is VERY low. The first time I only had the BMX, 4 nodes removed (all negative), then tamoxifen because of my low onco. This time I don't feel comfortable not doing radiation and chemo. My BS actually said "you may not need radiation". WHAT????? LOL

Beesy_The_Other_One

Southern,

Like Illimae, I am treated at MD Anderson in Houston. There's nothing perfect this side of glory, but it is a well run place and they have the ability to hire the best of the best--everyone from the folks who take your blood to the docs. One thought: MD Anderson is accustomed to working with patients remotely. People come from all over the world for treatment, and they can direct a doctor in your area about the protocol they want for you. Our church is close to the medical center, so we end up having a lot of folks who are here for treatment become part of our congregation. One woman with carotid artery cancer, had to stay for treatment over Christmas for twelve weeks, but she's now home and had a complete response to chemo when her original prognosis in W. Virginia was a death sentence. MD Anderson even saved her eye, which she was told she would lose. She was able to do most of her treatment at home. I would not assume that you would have to stay here as she did. Her situation was highly unusual. If I can help you in any way, let me know.

Beesy

southernbelle77

Beesy, I seen that you had radiation. I’m assuming at MD. When I looked them up it said they had a proton center. We’re you able to get the proton therapy or was that not an option

Beesy_The_Other_One

Southern, I did my radiation at an MD Anderson regional center near my home for ease. I'm willing to drive to the Med Center for other treatment, but 30 treatments (six weeks) would have been brutal. I felt comfortable that they were avoiding heart and lungs well--MD Anderson has a surface guided system that helps ensure you're lined up correctly and exactly as you were in simulation.

southernbelle77

Beesy Here I would have to drive 1 1/2 hours(one way to go to either my current teaching hospital or a new one. I don’t trust the locals to do the radiation. So if I was able to just stay & do it there, especially the proton which isn’t in my state, then that’s what I would prefer.

KBeee

There are some places at big medical centers where you can stay at a very reduced rate (some even for free) during radiation. Ask about it when you have your consult. Then you would not have to travel.

Beesy_The_Other_One

Southern,

I asked about Proton Rads and they did say they used it most with children and specific types of cancers. There's an entire MD Anderson Proton building in the Med Center, by the main campus. And when I say campus--I am not kidding. MD Anderson has so many buildings in the Med Center it will blow you away. KBeee is right about lodging--there are many, many low cost options. There are churches that own apartments that are beautifully furnished that are available for very low rent, for example. MD Anderson will have all that info for you.

Beesy

southernbelle77

I just wanted to come back to update & pick some brains. Lol

My scans came back completely clean!!!! No spread to even a node! My MO said I saved my own life. Again... She shut down my ovaries today with zoladex. A little nervous about that because the pamphlet said it causes a surge of hormones & my margins weren't clean so there's still cancer in there. I didn't want to be left unprotected though. Hope I made the right choice.

She went on again about the low oncotype before & said she was going to see if she can get my insurance to pay for it again. She said she thinks this was left over & not a true recurrence since it was so fast. RO said the same thing. The most conservative chemo is currently being suggested though. 4 infusions of TC, skipping red devil completely. The tumor board meets May 6th to discuss my case. They will have all 9 medical oncologist from the breast cancer clinic there to see what everyone says. Chemo or no chemo & then how much if so. Then we will see what MD Anderson says, but I can't get to them until after my re-excision. Which is who really matters, but what's everyone's opinion on this? I had extensive lymphvascular invasion this time so I'm worried. It's also grade 3. Conservative was fine before, but this time I don't think so.

My RO said 5 weeks of radiation covering the entire breast & all my nodes (chest, underarm & clavicle). Sounds like she's hitting it with all she's got. She also sent me to PT because I'm still having range of motion problems & radiation is going to cause more. She also said I still have cording & she could see it as I lifted my arm.

No one was happy with my PS & how he handled this so his reputation there has taken a hit. I also need a new plastic surgeon, but now with radiation that's on the back burner. I'm thinking NOLA or San Antonio for that.

Nomaddd

I am so happy that your scans came back negative! Lots of hugs💕

2002chickadee

Hi Southernbelle, I'm so happy your scans are clear! I too had a recurrence that they thought was really just the original cancer, detected at the biopsy scar just after I finished chemo, and I remember after getting a clear PET scan that I was flooded with joy to have the same old stupid breast cancer I'd spent many difficult months treating. A good lesson on perspective, I guess. I also then got switched from a plan for tamoxifen (which I had filled but not yet started) to ovarian supression + AI, and I also got sent for the full radiation as you desribe. It definitely has exacerbated issues with arm range of motion and strength, so I recommend you try to get in with physical therapy to at least get some things you can work on at home during your upcoming treatments when you may not have time to do PT visits in person.

Best of luck and keep us posted!

southernbelle77

I ended up having to give up on MD Anderson because I would have had to wait over a month just for a consult & then longer for treatment to start there. I couldn’t afford to wait for MD with it doubling in size every 4 weeks.

During my re excision my plastic surgeon collapsed my lung & they sent me home like that only for me to return the next day to be admitted for 4 days. 🤦🏼♀️

So... a month after that I’m doing 4 dose dense Taxol followed by 4 dose dense AC, all every 2 weeks. I was having tachycardia after every Taxol & I’m seeing a oncology cardiologist now. He just recently put me on a low dose beta blocker hoping it wouldn’t lower my blood pressure (it’s low) but bring down my heart rate. No one knows why it’s happening, but my oncology cardiologist thinks it’s either Taxol or the steroids. Both were reduced today

At today’s pre chemo my labs came back that I had high calcium levels & no one knows what’s going on with that either. I have another’s lab draw & appt with my oncologist next week to check up on that. Oh, and I’m leaking urine at random times. WTH??? I can’t seem to catch a break lately. I’m sure you all understand that im super paranoid about the calcium. One good thing about staying with my current cancer center is that they are being very careful with me now.

Anyone ever experience any of this during chemo or am I a weirdo

KBeee

I think you are wise beginning treatment now and not waiting. You've been through a lot! I take calcium and have sporadically had calcium numbers that were a little high, but nothing crazy. Maybe ask them to look at it again at your next appointment and investigate further if it continues to rise. I did Taxol (12 treatments rather than dose dense high dose) and I did 4 dose dense AC. I tolerated them well. On AC, I took antinausea meds around the clock for 5 days (I even set my alarm at night). I did not have any nausea or vomiting. The antinausea meds can cause consitpation, so I ate things to help deter that. It all worked pretty well.

Hoping you get answers soon adn that the pelvis checks out okay.