A little worried about timing. Want to hear from others.

Options
Tom1981
Tom1981 Member Posts: 52
edited March 2017 in Stage III Breast Cancer

The wife had chemo first and then surgery about a month after. We are six weeks out from surgery and she is still getting expanded. We are guessing maybe a couple more weeks before radiation. She had a little residual disease after surgery. I think we are both getting a little anxious to start the next step. Has anyone else gone this path and had a longer gap like this?

· Share on FacebookShare on Twitter

Comments

  • Kicks
    Kicks Member Posts: 4,131
    edited March 2017

    What do you mean by 'she is sti getting expanded"? Are you talking about reconstruction? Has she met with her Rads Dr?

    · Share on FacebookShare on Twitter
  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2017

    Tom - does your wife have tissue expanders? most plastic surgeons will not fully inflate a TE before radiation. You should definitely meet with an RO now to discuss this issue.

    · Share on FacebookShare on Twitter
  • Tom1981
    Tom1981 Member Posts: 52
    edited March 2017

    Yes she has expanders. We have talked to the RO, MO and reconstruction surgeon. There will be more expansion after radiation. They may even remove some fluid from the one side during radiation but we wont know for sure until the simulation. Our concerns are with the 8 week mark rather than 4-6 as seems to be the normal for radiation. The only thing I can think of is that she had some new thing done during surgery where they reconnect the lymph vessels after dissection to help prevent lymphedema. I'm wondering if maybe that requires extra recovery time. No one seems concerned with the 8 weeks. We are just a little stir crazy and want to get on with it. Essentially just looking for people that have waited this long.

    · Share on FacebookShare on Twitter
  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2017

    Tom - yes I was even longer. I had neo-adjuvant chemo then surgery. Because I did not have pCR, the tumor board determined I needed to do more/different chemo after surgery. And then I had to recover from that. So after surgery it was 3 months until my last (SECOND round) chemo and then 2 full months before I started rads - a full 5 months after surgery.

    I know the wait is hard. Hope it won't be too much longer.

    · Share on FacebookShare on Twitter
  • SSInUK
    SSInUK Member Posts: 245
    edited March 2017

    I had to have further axillary clearance after mastectomy so it was around ten weeks to get to rads. The wait was harrowing but in retrospect I don't think significant. Nine months later when they found they'd left some cancer behind I had rads again and that felt meaningful and worthwhile so that puts another perspective on it. My friend is an RO and they researched the effect of waiting times at her hospital and did not feel that timing was a truly significant issue - certainly not up to 12 week

    · Share on FacebookShare on Twitter
  • Tom1981
    Tom1981 Member Posts: 52
    edited March 2017

    MinusTwo- maybe you can give me a better understanding of pCR since, at least I don't believe she had pCR. Does it mean to truly wipe out the cancer, which is what I think, or does it mean it just no longer shows on scans. My wife went through chemo first and the scan no longer lit up however, pathology still showed plenty of cancer. There was response and everything did shrink but more like 50% was left. Her tumor was huge though and lymph nodes involved. Now you have me worried again. Should we be doing more chemo? The tumor board at the Cleveland Clinic didn't seem to think so, I know it was discussed though.

    · Share on FacebookShare on Twitter
  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2017

    Tom - After chemo & before surgery I had a CT with & w/o contract, an MRI and a PET/CT. All showed that the tumor shrank but was still there. That's my understanding of pCR. Someone else will certainly know more. My surgeon reported that she was able to excise any remaining malignant areas and she got clean margins. That's what you want to look for in the surgery report. My tumor board decided to go for 'over kill' with more chemo before rads. I'm guessing this was partially because this was a recurrence 2 years after my first go-round. My first diagnosis was DCIS so I didn't have any chemo or rads & obviously a micromet just escaped in the first surgery.

    Cleveland Clinic has a good reputation. You should probably talk about this with your docs.

    · Share on FacebookShare on Twitter
  • Tom1981
    Tom1981 Member Posts: 52
    edited March 2017

    Thank you for the info. The fact that everyone is different just makes it so difficult to get a grasp onto things. I would guess that since it was a recurrence and maybe because of different markers the plan was different for you. She had some risidual disease at the deep end of the main tumor. Less than 1mm. They said it was so close it may have actually come out with the cut. It was "in the ink" whatever that means. They said if they went back in now they would sort of be working blind as they dont know exactly where it is. They were convinced the radiation would mop that up and since she is going with implants she will know if anything funny shows up later. I don't rest easy with this stuff but since nothing really changed with the plan after the tumor board I suppose they know best. I do have plenty of questions I'm going to ask. I know the MO really wants to get her in the Ibrance trial so maybe he is aiming for that as he did say certain additional treatments would make her ineligible although he never specified what those treatments were. I have read very good things about Ibrance so here is hoping she ends up actually getting it.

    · Share on FacebookShare on Twitter
  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited March 2017

    Hi Tom, I'm sorry you and your wife are dealing with this. I also didn't get a PCR after chemo and I shared your same concerns. I went to 5 different top oncologists (Rush University, U of Chicago, Northwestern, Mayo Clinic, and Memorial Sloan Kettering) because I wanted more chemo because I was so worried about residual disease. All had the same opinion as the Cleveland Clinic; they didn't recommend more chemo because I was strongly ER+ and said hormonal therapy (AI + ovarian suppression) was my best defense. I still have trouble finding peace with it, as I really wanted to take Xeloda to minimize my risk of recurrence. All oncologists said they would only prescribe it if I were triple negative. They also recommended the PALLAS (Ibrance) trial, but I landed in the control arm. Anyway, just wanted to share with you in case it helps.

    · Share on FacebookShare on Twitter
  • Tom1981
    Tom1981 Member Posts: 52
    edited March 2017

    Mom....Think of it this way, 5 of the top breast cancer hospitals all agreed on the same course of action for you. I would have been scared had they each told you a different plan. At least this way you know you are doing things right. I know we all want the shotgun approach but they may very well find out later it may not be the best course of action. Until they definitively know how cancer works we won't really know. Until then, the best of luck with your situation. I hope goes well for you and everyone here.


    · Share on FacebookShare on Twitter
  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited March 2017

    Thanks, Tom! Best of luck to you and your wife, too. Please keep us posted

    · Share on FacebookShare on Twitter
  • Kathleen26
    Kathleen26 Member Posts: 210
    edited March 2017

    I was in a similar situation to your wife. I didn't have any type of reconstruction, but for some reason my incision did not heal well, and they would not start radiation until the incision was fully closed. That took eight weeks, which was at the outer limit of what my RO said I could wait and still expect optimal response.

    So far so good, I am close to 7 years out and NED. I hope the same holds true for your wife.


    · Share on FacebookShare on Twitter
  • Tom1981
    Tom1981 Member Posts: 52
    edited March 2017

    Well we are at week 6 and apparently our concerns are over. We went for an expansion yesterday and they said she's done with that part. Wasn't expecting that. The waiting be it a problem or not isn't a concern anymore. On to the next step! She apparently got a good stretch yesterday though, the poor girl has had a rough day and is asleep on the couch as I type this. My poor little warrior. Thanks for chiming in Kathleen. Always good to hear success stories!

    · Share on FacebookShare on Twitter

Categories