Urgent! Any chance to do radiation after mastectomy?

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bbbddd168
bbbddd168 Member Posts: 32

Hi,
I was diagnosed on Feb 5 one spot 7mm, very close to it another 9mm IDC on my left breast. Grade 2, Oncologist said it seems stage 1A but not 100% confirm till the surgery. ER+(90-100%),PR+(90-100%), HER-(0), My surgeon said I can choose either lumpectomy+radiation or mastectomy without radation, AI afterwards. Since my sister has breast cancer at 49, and mine is on the left side(my family has heart issue especially HCM which I have now) and I do not want to take radiation, so I want to choose mastectomy+reconstruction instead of lumpectomy, any suggestion?Shall I choose lumpectomy since it has quick recovery and no reconstruction problem? Mastectomy even it recurs later?

Secondly I only had chance to see radiation doctor yesterday. She suggested me to do mastectomy finally. But she mentioned if I do mastectomy first, if I have any even 1% chance of radiation after mastectomy,(my surgeon and oncologist all said I should not need to do radiation after mastectomy) It is double the harmful to me (skin + heart) after mastectomy than doing radation after lumpectomy only. So her suggestion is I do lumpectomy first, after checking cancer tumor and nodes and 100%sure I do not need to do radiation after mastectomy, then do another Mastectomy+reconstruction together. This means I need to do two surgery in a row, one lumpectomy and mastectomy again. Is this reasonable? What shall I do?

I can only see Plastic surgery next Tuesday since it is hard to book him.

Need to make decision very soon, almost a month now.
sorry for the long post and poor language. Any feedback is appreciated.



Comments

  • SoulShine1969
    SoulShine1969 Member Posts: 3,047
    edited February 2020

    bbbddd168

    I'm sorry for your diagnosis. Coming up with the right treatment plan after diagnosis is a stressful scary time. If I understand you correctly you are leaning towards Lumpectomy followed by Mastectomy, and you're wondering if that is reasonable. I personally would think that is reasonable.

    I myself have had several breast surgeries including Mastectomy, Lumpectomy, Reconstruction and Revisions. I may have another Lumpectomy and Revision in the next month if biopsy comes back as a reoccurrence.

    Cancer diagnosis, treatment plans and doctor visits seems like such a whirlwind of scattered thoughts and racing hearts, sometimes you'll leave a doctors visit more confused than before. My advice is to go with your gut and listen to your own inner voice. You know what is best for you.

    All my best to you

  • LaughingGull
    LaughingGull Member Posts: 560
    edited February 2020

    Hi,

    You got great advice above. To me that plan sounds reasonable, even if it’s a pain to have to go through two surgeries. I think if I were you I would take it.
    I had a mastectomy and axillary node dissection, during which they found more cancer than expected, and they recommended radiation on top of the mastectomy, which was not the initial plan. It was on the right side so I didn’t have the heart concern but it changed the plan for reconstruction. Having more skin available would have helped with recon.

    Best luck and here is to hoping you will not need the radiation

    LaughingGull

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2020

    Is it possible that you might need radiation even after a MX? Yes. Not likely, given that it appears that you have an early stage diagnosis, but possible if the cancer is close to the chest wall and the surgical margins are too close. Or if the cancer turns out to be very large. Or if it turns out that you have several positive nodes.

    So what do you do? No one here can tell you - it's too personal a decision and we all look at these choices differently, from our own perspectives. You have to do what feels right to you. Going with a lumpectomy first, to find out the final pathology and whether you have nodal involvement, and then proceeding to a MX, is a reasonable option. Is this what you want to do? Or would you prefer to avoid having two surgeries if you could be reasonably certain that you won't need rads after the MX? If you would prefer one surgery, the question is whether you have all the information you need to make your decision.

    Do you know where the cancer located? Is it anywhere near the chest wall? If not, then that reduces the likelihood that you might require rads after a MX.

    Second, have you had an MRI? While it's not foolproof, an MRI sees things differently than a mammogram or ultrasound, and in combination with your previous imaging and your biopsy results, might be helpful in determining the size of the cancer, whether there is anything else lurking in your breast that might be worrisome, and whether your nodes appear to be involved. No method of screening, including an MRI, will pick up a small amount of nodal involvement but a small amount of nodal involvement likely wouldn't require rads anyway, if you have a MX.

    If you are comfortable with starting with the lumpectomy and making the next decision from there, then do it. If you would prefer going straight to a MX, then see what you can do to get more information about how likely it is that you might require rads even after a MX. Both your surgeon and oncologist told you that you wouldn't require rads after the MX. Ask them how certain they are about this, and why.

  • bbbddd168
    bbbddd168 Member Posts: 32
    edited February 2020

    Thanks all for the reply.

    I did MRI also. Here is the report.

    LEFT BREAST:
    Biopsy clip at 12:00 middle depth, 6 cm from the nipple, is associated with an enhancing mass measuring 7 x 7 x 6 mm. Approximately a centimeter inferior and slightly lateral to this, at 1 to 12:00, middle depth, for cm from the nipple, is a second enhancing mass measuring 9 x 9 x 9 mm. This corresponds with the mammogram

    AXILLAE:
    No suspicious axillary lymphadenopathy.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited February 2020

    I can tell you I’ve had rads on both sides and had no concerns about my heart. The technology is so good these days. My RO looked me in the eye and told me (twice) that she would not irradiate my heart. I did have to do the breath hold thing for the left side but it wasn’t a big deal at all.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited February 2020

    If you are otherwise healthy - don't expect to have any issues with anesthesia or blood clotting and stuff like that, and can manage it in terms of work time off, I think that the two surgeries is a very reasonable route

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2020

    As Beesie says in her excellent post, it's a very individual choice. Personally I'd want to go right to the BMX and skip the extra surgery and radiation.

  • bbbddd168
    bbbddd168 Member Posts: 32
    edited February 2020

    Thanks very much for all of your feedback. I would most likely do mastectomy with expander at this point

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2020

    Great that you've had the MRI and that there is no visible lymphatic invasion. From the description, "middle depth", it sounds as though the cancer is not near the chest wall or the skin. If I've interpreted that correctly (you should get this confirmed by the surgeon or oncologist), this would bode well for not needing rads after a MX unless there is some nasty surprise, such as a new area of cancer - which is unlikely since the MRI didn't see anything.

    Decision making is alway hard because we can never be 100% certain about anything until we have the final surgical pathology. Usually the pathology from surgery is close to what was expected from the imaging and biopsy however there can be differences, sometimes good (a smaller than expected cancer, for example) and sometimes bad (more cancer than expected, or positive nodes).

    Good luck with your decision and with the surgery. Let us know how it goes.




  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited March 2020

    I agree with what your radiation Dr said. It sounds like you're getting really good advice there.

    I think a lumpectomy is preferable when possible. Just my opinion based on my experience.

    Best wishes to you whatever you decide.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited March 2020

    I was told by the RO that there would be no damage to the heart or lungs. Several months later, I had an appointment with a cardiothoracic surgeon for a completely unrelated matter. I mentioned that I'd had radiation, thinking of skin changes should I need surgery. He thanked me for bringing it up, and said they'd have to test me for heart damage. I told him what the RO said, and he just smiled sadly and said that there is ALWAYS some damage. That left me not sure what to think. Then on my latest CT scan (for yet another unrelated issue) last October, there appeared some new smudges on my lung, which the radiologist who read it determined was scarring from radiation. So take what the RO says with a giant grain of salt. Mine apparently lied through his teeth.

  • Runrcrb
    Runrcrb Member Posts: 577
    edited March 2020

    as most have said, talk to doctors, do your research and then make the decision that allows you to sleep at night. A nurse once told me that breast cancer is an emotional crisis but rarely a medical emergency. While it seems like every thing should stop until you get the cancer out, it is better to get second opinions and all of your questions answered before making your treatment decisions. I was two months past diagnosis before I decided on a surgery plan and three months out when I had my mastectomy. My final surgery was 25 months after diagnosis.

  • Floral
    Floral Member Posts: 41
    edited March 2020

    Please don’t assume that a mastectomy means no radiation. I supposedly had a 1.5 cm tumor and no node involvement. Oops, never mind, 2.5 cm tumor, micro mets in one node. Radiation. The best laid plans...

    Good luck, I hope it works out well for you

  • bbbddd168
    bbbddd168 Member Posts: 32
    edited March 2020

    Thanks for all the feedback.

    @Folral, Did you have a node radiation only not including breast or whole breast plus node radiation?

    One doctor said Since it is mastectomy, even if radiation needed , no need radiation for breast, just the nodes, is it correct?

  • bbbddd168
    bbbddd168 Member Posts: 32
    edited March 2020

    Thank you.@Folral, Did you have a node radiation only not including breast or whole breast plus node radiation?

    One doctor said Since it is mastectomy, even if radiation needed , no need radiation for breast, just the nodes, is it correct?

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2020

    "One doctor said Since it is mastectomy, even if radiation needed , no need radiation for breast, just the nodes, is it correct?"

    If the reason for recommending rads after a MX is either the size of the tumor or the chest wall margins being too close or positive, then rads will be given to the breast area. If the reason for recommending rads is because of positive nodes, I think it's an option to do rads only to the axillary nodes, but I don't know how often that is done. That said, it is controversial as to whether rads should be given after a MX if there are fewer than 4 positive nodes and no other factors indicating the need for rads.

    Postmastectomy Breast Cancer Radiation Therapy

    https://www.ncbi.nlm.nih.gov/books/NBK519034/


    Floral, did you have an MRI prior to your surgery? And did you have close margins at either the chest wall or skin, or was the micromet in the node the only reason for the rads?

  • bbbddd168
    bbbddd168 Member Posts: 32
    edited March 2020

    @Runrcrb, Thanks very much. After mastectomy and chemo, did you do radiation only to the nodes or radiation to the whole breast + nodes also?


  • Runrcrb
    Runrcrb Member Posts: 577
    edited March 2020

    My radiation was on my breast, chest wall and along the scar from my mastectomy. It was not focused on the lymph nodes.

  • bbbddd168
    bbbddd168 Member Posts: 32
    edited March 2020

    Thank you Bessie. I am still debating now whether I should have lumpectomy or mastectomy directly also.

    I saw your post at other place " I believe the % of recurrences that are IDC is somewhat higher after a MX than after a lumpectomy." , why is this?

    Does it mean I have less recurrence rate if I do lumpectomy+radiation than mastectomy?

    I am comparing radiation side effect or reconstruction side effect now.

    What do you recommend? Lumpectomy+ radiation or mastectomy+reconstruction.

    Thank

  • Cricketdog
    Cricketdog Member Posts: 57
    edited March 2020

    I had a lumpectomy and radiation (faster course with stronger dosage plus boosts in the end) and the side effects were not horrible. I did not have any skin reaction from breast and node radiation until I started chemo two days after radiation ended. It was miserable and painful for nearly two weeks and then healed almost overnight. I too was told that the modern treatments do not necessarily impact the heart and lungs like the older treatments. I think holding your breath is pretty standardized now too. And, as others have said, there is a chance of needing radiation after a mastectomy too so maybe focus on the surgery and impacts each will have is helpful to your decision??

    Of course, it's a personal choice and I preferred a less invasive surgery and I did not want to go down the implant route. I've been wearing a sports bra 24/7 for 2.5 months now. You really can't tell I had surgery but for the two scars in my armpit area. My mass was 1.8 cm and apparently, my surgeon is a whiz kid.


    Hoping you reach a decision that brings you comfort and peace. ❤️

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2020

    "I saw your post at other place " I believe the % of recurrences that are IDC is somewhat higher after a MX than after a lumpectomy." , why is this?

    Does it mean I have less recurrence rate if I do lumpectomy+radiation than mastectomy?"

    .

    The comment you reference was made in a post about DCIS. The point I was making is not at all relevant to your situation, with an invasive cancer diagnosis.

    As for what I recommend that you do, I don't know. Only you know what the best decision is for you. Two people with exactly the same diagnosis and health issues might choose different options, and for each person, it can be the right decision.

  • bbbddd168
    bbbddd168 Member Posts: 32
    edited April 2020

    Update

    Had lumpectomy and one positive sentinel node 1.5mm which MRi did not find. NCCN strongly suggest radiation even after mastectomy with 1-3 positive node. So I will do radiation for sure. Thanks for everybody here

  • OnlyGirlof5
    OnlyGirlof5 Member Posts: 78
    edited April 2020

    Wow medical opinions seem to differ greatly anymore. I had a mastectomy (left only) following 2 biopsies that showed NO cancer in the nodes. Nope, it was there. Only in 1/3 and micro with EE but there nonetheless which has now complicated my decision making. I am right now trying to decide if I should go forward with radiation despite the RO's opinion the risks outweigh the benefits. My oncotype score was a 4. The EE concerns me, but the RO wasn't concerned about it at all. The risks are more in connection with my reconstruction. I am still young and care what the final outcome is but would rather reduce my risk even further.

    I'm torn. But as others have said, never assume a mx will eliminate the need for rads.

  • bbbddd168
    bbbddd168 Member Posts: 32
    edited April 2020

    my oncotype is 8. But with one node 1.5mm, I am debating Chemo since NCCN does not recommend to use oncotype score alone with positive node. I am LVI, multifocal though each is 10mm, 7mm, 2mm. Grade 3. Mine is IDC with mucinous feature, family history though gene test only RAD51D uncertain. I have talked to 4 different oncologist. 3 senior said no chemo, one young one said I should consider Chemo. But radiation is definitely. Check NCCN guideline, radiation is strongly advice for 1-3 node positive

  • JRNJ
    JRNJ Member Posts: 573
    edited April 2020

    I was obsessed with this topic in September and is one of the reasons I dumped my BS. She told me no radiation or chemo or ALND with mastectomy unless greater than 3 nodes. No further explanation. This made no sense to me, but I thought lets see what happens first as MRI showed no node involvement. I came out of surgery with one affected node and final pathology 2 macro nodes, 2 mm and 3 mm. FYI this does happen often, not that uncommon. BS didn't visit me in the hospital, sent trainee and wouldn't talk to me until final pathology came back. I was distraught. I researched the NCCN guidelines and saw recommendation for mastectomy 1 to 3 macro nodes and no ALND than either ALND or radiation recommended. When I tried to talk to them about the NCCN guidelines, trainee had no idea what I was talking about and BS was rude and horrible. But the RO on her tumor board didn't hesitate to recommend radiation supposedly because I had LVI, no talk about the nodes, but since the info was coming from the BS second hand I couldn't have an intelligent conversation about it and I didn't meet the RO for another month. So all that worrying for nothing, I was ready for a fight. I also asked her if the RO would radiate my chest also? She said of course not, she was offended like I was implying she didn't get clean margins. But when I met with him, his plan was chest and nodes. And they are on the same tumor board. Additional opinions from Rutgers and Sloan agreed with doing radiation. I want radiation because with 5 nodes taken out it is possible to have additional positive nodes, especially with ILC that spreads in sheets. Oh and another consultation tells me she left too much breast tissue behind also. You never know what you are getting. That being said, I am also afraid of side effects, especially lung cancer, my mom died of lung cancer. But it is on my right side so a little relief regarding the heart. My RO is doing 28 regular and 7 boost. I just finished week 2. Overall not that bad. I have a slightly swollen throat and was really tired the first week, but now I am on steroids for some lingering chemo issues, and feel like the energizer bunny.

    The guidelines don't recommend radiation for micro invasion, but if I had it I would still want radiation. I read an article on how microinvasion should be treated also from 2009!!. https://www.breastcancer.org/research-news/2009060...

    They give radiation automatically to lumpectomy patients regardless of node status, just doesn't make sense to me. I never saw the study Beesie provided, thanks Beesie, it appears it is what the NCCN guidelines are based on. This needs to become more well known, as my BS who is head of surgery apparently is not aware of it. Especially with the push to not do ALND anymore.

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