Questioning my treatment

jenlee

I don't know if anyone else does this, but I seem to be cursed with a tendency to wonder if I had the right treatment and if it was aggressive enough. When there was a thread about what kind of chemo people had, I wondered if mine was strong enough. I met several surgeons who acted shocked that I "survived" 8 rounds of TAC, which made me feel better about my chemo being aggressive.. Recently, I've seen a few women with a similar diagnosis,who had chemo and mastectomy. But they also had radiation. I was told I didn't need radiation unless I chose to not get a mastectomy. Now I'm second guessing, wondering why someone with the same diagnosis and node negative, would be given radiation. I've recently changed MO's, but in the process of changing, consulted with several others, who all thought I received good very aggressive treatment. But now that i've made these observations about other womens' treatment, i've continued to worry throughout the weekend. Would appreciate any insight. Thanks!

FLislander

Hi Jen

I had skin involvement and node involvement and they still said I was in gray area but decided for rads instead of taking out more nodes, if you had positive nodes then you would be in! Are you taking tamoxifen, they re saying that's the best defense, looking at the SE it had better be the wonder drug they say it is.

SpecialK

I had a BMX with positive nodes and did not have radiation, but I did have ALND.  My understanding of those who had BMX (or MX) and had radiation needed rads to assorted locatons because they did not have the additional positive nodes removed, or their cancer was located in a place that did not provide clear enough margins.  I don't recall seeing people who had rads without either of those scenarios, but I could be wrong.  I did ask my BS and MO each (twice, lol!) whether or not I needed rads and they both said no, even though triple positive BC is considered aggressive.  I did not have any consults with ROs.  Hope this makes you feel better!

jenlee

FLislander, thanks! And yes, just started tamoxifen yesterday:)



Specialk, thank you. I was wondering if maybe the location of their tumors had to do with their receiving radiation. Not that I'm begging for it, but as long as I was in the trenches, I wanted to throw everything possible at it.

debbie6122

Jenlee- I often wonder about different tx for women with the same dx as well. My daughter is TN. over 6cm tumor, stage/grade 3c and only had 6 tx for ATC no radiation and you had 8 TX, just makes me wonder if she got the right tx. I guess every doc is different on how they treat there patinets.

Racy

Hi, I had TAC x 6 which is the current standard of care and, I believe, considered aggressive chemo. I have seen maybe one or two ladies have eight cycles but that is experimental, I understand. TAC is very good.



I can't comment on the rads issue as I had lumpectomy.



You seem to have had very thorough treatment. Good luck!

SelenaWolf

I had eight cycles dose-dense, AC (4) followed by T (4), which - I believe - is the standard-of-care for the clinic I went to.  I, also, had radiation because I opted for a lumpectomy instead of a mastectomy.  I, also, chose additional regional node radiation based on the results of a promising new study.

I think much of cancer treatment these days is based on collaboration between the treatment team and the patient, and is formulated with the patient's pathology in mind.  Not all cancers are the same and not all can be treated with the same protocol.  Some cancers - depending on their characteristics and "personality" - respond better to different drugs or, maybe, the same drugs but in different quantities.  Plus, research is discovering new things all the time and treatment protocols are, often, "tweeked" accordingly.

Another factor seems to be the overall health of the patient going into treatment.  Pre-existing medical conditions - such as heart disease, diabetes, kidney disease, etc. - can prove challenging and have to be taken into consideration when planning treatment.  Dose dense can be debilitating and you have to be in good, physical health to withstand it.  So many, individual things can come into play during this journey and every one of them could have some sort of impact.

Although I am unhappy that research is not having much luck finding a cure (although scientists assure us they are getting closer), I am relieved that there are a number of different treatment protocols out there that can help women and can provide them with a choice.

peggy_j

I suspect your reaction is common. We have to make big decisions and, as far as I can tell, it's never 100% clear that we made the right ones. Plus, patients (and their docs) have different approaches. A simple example: some people want to take the most aggressive treatment possible, while others are more cautious (sometimes more aggressive treatment can result in SEs, and if that happens, the patient may wonder if it was "worth it.") Another example: some patients like to use the latest-and-greatest Tx while others (like me) prefer the Tx with the longest track record. There is no right or wrong. There may also be other factors in the decisions that you or I may never know about. Each person makes the best decision for themselves.

FWIW, I had doubts at a couple different phases of Tx and post-Tx. I talked to a counselor from our local cancer support center. She said the ideal goal in decision making--in the face of such uncertainty--is to try to be in a place where you won't have regrets no matter the outcome.  I had a lot of angst after I finished Tx and that was one of the two times I spoke to a counselor. I wonder if that would be helpful for you too, to help sort through these lingering doubts. My sense, based on your other posts, is that you that you made solid decisions that were right for you based on the info you had.  Unfortunately, we live in an uncertain world, so doubts can always come up later. In my case, my doubts were part of my whole post-Tx bundle of worries which centered around: what if it comes back? It's a scary thought. I found it helpful to talk to someone to speed up the process.  Now, I don't think about it nearly as much. Good luck.

jenlee

Thanks everyone for your support. SpecialK was correct, I pm'd one of the women and she said that she had a mastectomy to avoid rads, but in the end, they determined that the tumor was too close to the chest wall, so unfortunately she had to have rads anyway.



Peggy, you're right, I will talk to a counselor about this second-guessing. I have been seeing someone since my diagnosis, but put that on hold travel for my surgery and recovery. I know that my team was very competent as far as treatment and furthermore they had an excellent tumor board comprised of other MO's, BS, pathologists, RO's, etc. So when they said I didn't need rads, it wasn't just one person's opinion, it was a consensus after my case had been presented and discussed.

momof3boys

I had a BMX, 4 TC then rads. No nodal involvement, no vascular invasion. I got 4 opinions on the rads....MO and BS didn't think I'd need rads because BS got 'great margins' and MO didn't think so because of this, no nodes, and low Oncotype score. But....the RO's did because my tumor was on the larger side (just over 4 cm), so I had radiation to the "incisional scar" which, they said was the most likely place for recurrance. Now doing tamoxifen..

Outfield

Jenlee,

A friend of mine who was diagnosed about 5 years before me told me something her oncologist said to her that she really took to heart. "Standard of care" is an ever-changing thing.   What was standard of care when you were diagnosed is not likely to be standard of care in a few years, or in my friend's case even a few months (some changes in how Herceptin is given).  That's something you have to accept, because you can't go back.

The other thing is that there are many choices for which all we know is that they are about the same.  If a new treatment comes up, often times the first study done is to establish "non-inferiority."  It looks at things a different way than a study to see if the new treatment is better.  So there may be multiple drugs or ways of treating something where all we know is that the new one/way isn't worse than the old one/way.  Or there may be multiple studies that look at the same question and have different answers.   And of course "breast cancer," even what looks similar in a tagline, isn't all the same - Special K gives a very good concrete example.  

I have some regret that I didn't participate in research during my initial treatment.  Doing so would have changed things around for me, I would have been given neoadjuvant instead of adjuvant chemo.   I stop myself when I mentally go there and remind myself that I did the best I could do, I made the best decisions I could at the time.  My nearby research institution is overwhelmed and underfunded and I would likely have waited a LONG time with an aggressive tumour to start treatment (it was certainly a long time to get even a first appointment).  Who could know, then or now, whether the question of neoadjuvant vs. adjuvant or a delay to treatment would change my outcome more?  You question whether you should have had rads, and there are probably many, many women out there dealing with the potentially awful side effects of rads who question whether they really needed to have done it, or whether they should've just had a mastectomy to avoid it  . . .  do you see what I mean?

We do the best we can do.   

Edited to correct a typo.  

Layla2525

momof3boys, what about the recurrence at the incision? My cancer was on one side right behibd the nipple and those were removed and I had the other side removed as well due to family hx. The incisions were but almost at the bottom of both breasts and the PS will do the exchange on same incisions. It was only caught on an MRI but I was given Arimi which made me very sick and now they wont give me anything. Jenlee...I wonder too if this is the right treatment and how to find a new oncologist?

mammalou

Jen,

I, too, spent a lot of time wondering if I had enough and the correct treatment. I had 4 DD AC and really felt i should have had Taxol, but my MO said that ER+ women did not benefit from Taxol. It tormented me for awhile but not anymore.  I realize that DD AC alone is also an aggressive treatment and have let the worry go.  I was a person that had RADS after MX,
ALND,  and chemo.  I had that because I had LVI and a small amount of cancer was found in the lymphatics of my skin.  I had RADS to my breast and axillary nodes.

We would all go crazy if we kept comparing our treatments because different docs do different things, but they can kill the cancer.

curveball

@jenlee, yes, tumor location can affect the advisability of radiation treatment. My tumor was located far around the side of my breast, almost in my armpit, and there wasn't much there but skin, tumor and muscle fascia. I really wanted to avoid RT, so chose MX rather than LX, but my BS told me that if the tumor had invaded either the skin or the fascia, I would be advised to have radiation treatment, even after MX. But thank God, I had enough clear margin on both sides to avoid RT. My diagnosis is IDC ER&PR +/HER2-, size under 2cm, with one positive sentinel node. I have not been advised to have either axial node dissection or radiation of the armpit on account of the positive node, and am currently waiting for Oncotype results for input to the chemo/no chemo decision.

I agree with what peggy_j said, make the decision that you won't regret, regardless of the outcome. I really agonized over LX vs MX. I desperately wanted to avoid RT, but couldn't seem to get a grip on the decision, and my BS kept reminding me (or at least it seemed like it at the time) that having MX wasn't an absolute guarantee of no rads. I finally decided on MX, because even if I'd had positive margins and RT had turned out to be necessary, I'd be able to say to myself, "at least I tried" (to get the treatment option I considered more desirable). I'd always have regretted it if I'd given up on MX based on what turned out to be a misinterpretation of what my surgeon was telling me. (I thought she was hinting that she expected RT to be needed and was trying to influence me to choose LX).

IMO, with any choice where there are as many options as choosing a cancer treatment, and so much uncertainty about whether the treatment actually caused the outcome (maybe the outcome would have been the same with a different treatment), second guessing can't do you any good. I know, through some family circumstances I won't go into here, that it can cause you a lot of grief, and there's no possible benefit to offset the negative emotions. No matter how much you second guess yourself, or even if you knew with certainty that you had made a wrong choice, you can't go back and change it. Second-guessing will only add a bunch of unnecessary mental torment to whatever else you are going through. I hope when you see the counselor you get some good tools to help you break that cycle of going over and over the "what-ifs" of the past.

HealingDreams

Hi, jenlee. I'm wondering if your doubts about your treatment are actually related to the question of if the cancer will come back. That is the scariest thought for me and the one likely to lead to obsessive worries.

I loved the answer that Peggy's counselor gave her: just try to choose whatever will not lead to regrets later, no matter the outcome. Probably good advice for all decisions, not just those related to cancer!

Wanted to let you know also about the NCCN site, National Comprehensive Cancer Network. They have the standard of care guidelines online. The guidelines for patients are worth reading with your tumor and your age in mind and might put your mind at rest regarding your treatment. (www.nccn.org)

jenlee

HealingDreams,

You're right, it is about fear of recurrence. Sometimes I can go for a few days without thinking about it, or i have my doubts and can calmly and rationally dismiss them. Then I see a few posts or read something that bothers me and it sends me into a dark place.

For almost all of the treatments, I felt like I had a choice... One center said no chemo, so I went to the one that was going to give me chemo. When my MO told me that a new study had been released comparing TAC x 6 to TAC x 8, but that the eight could be brutal, I chose the eight treatments. I chose a mastectomy over lumpectomy. But RADS were not offered and when I asked, I was told that the tumor board was in agreement that I didn't need them. And I did ask specifically a number of times. And I understood and agreed with the rationale.

Thank you so much for referring me to the NCCN site -- my treatment clearly meets the guidelines. I'll find something else to worry about soon:)

ruthbru

You did the best you could with the knowledge you had. Now whatever will happen, will happen. When I kept wanting to rehash things with my oncologist, he said a very smart thing: "I gave you the best treatment possible with our present knowledge. You are doing everything you can (diet, exercise, anti-hormonals etc). And some things we just have to leave to God." (For the non-religious you could change it to, "Fate.") Good advice, I think.

RosesToeses

Hi Jen,



Have you seen the NCCN's treatment guidelines? I read about them on another thread and find them enormously helpful in understanding why treatment decisions are made and seeing current "best practices" for BC. As others have said, each case is different and oncs may have reasons for different decisions, but at least this can give an idea of what to ask about.



If I did it right, this link should show their RT guidelines for BC: http://www.nccn.com/files/cancer-guidelines/breast/files/mobile/index.html#69



Hope it gives you some peace about your treatment!

NancyHB

When originally diagnosed, my MO suggested 4 x TC, followed by 30 rads - he said it was the standard protocol for Stage 1 Grade 2 with no node involvement.  But she wanted to wait to start until the results of my Oncotype test came back - and that changed my chemo to 4dd x AC and 6dd x Taxol (20 weeks of chemo), but still 30 rads.  It had to do with my high metastatic recurrence rate - they wanted to hit me with everything, and then some.  Much like Ruth said, my MO said This is what we know, and this is what we have to offer - and this is what we can do to keep your risk of recurrence down.  

I trust my MO, or I wouldn't be with her.  I have to believe I got the best treatment possible, given my own, personal circumstances.  I've talked with women with the exact same diagnosis as mine but with low Onco scores who never had chemo.  We are all so different that I can't compare my treatment to someone else's because there are just too many variables.  But I am afraid of recurrence, so I am happy to do whatever they wanted.  Oh, yes, I started Tamoxifen about four weeks ago, too.

wildrumara

I know what you are feeling and I too felt the same way.  But, at some point, I realized that I had to trust MY TEAM.  The team that has invested months and months with me, despite getting another opinion regarding RADS from another institution.  I spent so much time researching and reading posts on these boards  that it was driving me crazy.  I too would read of women getting radiation who had a less aggressive diagnosis than myself and became quite obsessed about it.  But again, at some point you have to LET IT GO and LIVE YOUR LIFE! 

Layla2525

I have been trying to find a new MO. i called my insurance 5 times today. I have a headache now after 2 hrs of searching, finally left msgs with 2 diff hosptl breast coordinators. My org MO gave me Arimi and i had allergic reaction and now he wont give me any meds and my fiance is having a nervous brkdown over worrying if the cancer will come back and I am like,whatever, the meds are no guarantee and the Mo is a dr and what the heck do I know? He and his cronies are all under one organization with 10 locations around town so hard to find someone for a second opinion and also when you just call an onc office to get a appt the nurses wont let you get one without a special referral even tho the insurance doesnt require one. My insurance is such a useless bunch of lazy people who dont wanna help,makes me wonder what they do when not hanging up on people.

Anyone ever changed MO before?

kira1234

Layla2525 I see you live in Florida as I do. I also use one of the organizations that has many locations across the state. In my case I did change my Onc. still with the same organization, just a new Onc. I love my new one, and yes the treatment he recommended for me did change.

NatsFan

Ruth has good advice - make the best decisions you can with the information you have at the time, in conjunction with your medical team. Once the decision is made, don't look back. It's done.  

If you don't feel you can trust your medical team, then remove those people from your team and put new people on your team you can trust. I was a borderline case for rads - I had two consults with two different ROs.  I did my research, asked a lot of questions during those consults, and in the end I declined rads.   And that was the right decision for me.  Someone else with the exact same pathology might opt for rads, and that would be the right decision for them. As others have said, you could go crazy comparing treatments.  We're all different, and our risk/benefit calculations as we weigh treatment options will all be different.  So it's not unusual that we'd all get different treatments.

And Layla, yes I changed MO.  Once chemo was over, apparently I wasn't interesting enough for my original MO, and my follow up appointments were only with the PA.  PAs and NPs are wonderful, and I have no problem seeing them for the initial part of the appointment, but I also want to see an MO each and every time.  So I phoned my PCP, my gyn, the RO I liked, and my surgeons, plus friends and co-workers who'd had cancer, to get recommendations.   One name kept coming up, so I scheduled a consult with her.  I told her why I was exploring leaving my current MO, and she promised me that I'd see her every visit.  That was 3 years ago and she's kept her promise.  For the record she reviewed the treatment plan from my former MO and had no issues with it - she said she'd have recommended the exact same protocol (6xTAC) so I felt good about that.  So, yes, change MOs if you don't have confidence in your current team, even if you have to drive to the next county or jurisdiction to find someone with whom you're comfortable.  Also, canvas your other doctors and your friends and co-workers for recommendations.  Good luck!

Layla2525

Natsfan,I was able to get a new MO with the help of the patient nurse coordinator,I called the president of the hospital's comment line and left him some info on her cause she is the only person I know who goes the second mile for the patient. If I won the lotto I would offer her a job as my private nurse,secretary,assistant,dog walker person. When she called me back,she had not eaten lunch and it was about 6pm,I would have offered to take her but she is at the beach and i am in town and i am sure she has kids she needs to see at her home. I got the number of a very good MO and have seen her and got Femara and got genetic counseling and its better. I finished all except 12 of the pills she gave me in a 30 bottle physician sample so I guess I took 18. I havent had any side effects to stay, 1 min dizzy,tired a lot,sleepy a lot,eating a lot

lorithelion

I have an MO that I really like. The last time I saw him, it was about taking a third AI as the first two anastozole and aromisin caused severe fatigue and depression even though I was eating healthy,exercising,on an antidepressent etc.I discussed with him,trying femora when my depression got under control. At the end of the appointment, he wanted me to see his NP at my next visit. I didn't say anything at that time, but when I made my next appointment, I  simply told the scheduler that I wanted an appointment with the MO. She said, "Oh he wants you to see the NP." I said no, Iwant to see the doctor. She made me an appointment with the MO. If my insurance pays the same whether I see the doctor or the NP. I am going to see the doctor as I am paying him to deal with my tx, not the NP.

chemochar

HI JENLEE,

  YOU PROBABLY DID NOT RECEIVE RADIATION BECAUSE THE CANCER HAD NOT SPREAD TO YOUR LYMPH NODES.  MINE WAS IN LYMPH NODE AND UNDER COLLARBONE WHICH CHANGED IT TO METATISTIC DISEASE.  DR TOLD ME IF THERE HAD BEEN NO NODE INVOLVEMENT  THERE WOULD HAVE BEEN NO RADIATION.  MY RADIATION TREATMENT CAUSED ME TO LOSE MY IMPLANT BECAUSE THEY HAD DESTROYED THAT TISSUE OVER IT.  I HAD TO HAVE IT REMOVED, THEN MORE RADIATION, THEN ANOTHER SURGERY (LATISSIMUS DORSI LAT PROCEDURE. )

  HOPE I HELPED YOU!

   CHAR

Mountain_Gem

I just had my 1st mammogram 9 mos after dx. It was clear, however it did say, "Scattered fibroglandular tissues in both breasts." I talked with my onc and she said it is just areas of density & says it's okay. I would really like to have an ultrasound, at least on my rt. breaast. I'm thinking of going to Stanford for a 2nd opinion. (I need to fix my sig. I already had lumpectomy, 3 week intensive RADS and I started Arimidex July 25th. I'm now dealing with lymphedema.

I know I'm only grade 1, stage 1, but I'm also 63 and have dealt with dense breasts all my life. I just don't understand why they won't pay for a litle ultrasound when I've already had cancer. I understand that MRIs can show single wild cancer cells that probably would never cause any problems, but ultrasound is different. What do you think?

wildrumara

@Mountain Gem -  I'm not an expert, but I'm thinking that another oncologist/surgeon would probably tell you the same thing.  The facts are.... you are 63-years-old, who had less than a 1 cm tumor, grade 1, stage 1.  You have an excellent prognosis!!  An ultrasound is probably overkill......?   Yes, cancer is unpredictable, and recurrances do happen, but my thoughts are that another doc will probably tell you the same thing that your onc did?   Good Luck!

Mountain_Gem

Wildrumara,

I'm sorry that I didn't see this post until today. Thanks for answering. You are probably right, but I still think I will try to get a 2nd opinion. I've had some serious bad luck with other health problems and surgeries. So guess I just don't trust anything yet. Thanks and I hope you're having a great evening.

Bev

I have no idea why this post is coming out so weirdly staggered. I tried to edit it twice, but it still looks the same...

 

Pbrain

Jenlee, I worry about this too. I had one round of TAxotere and carboplatin with herceptin and ended up in the hospital. I was seriously sick from that! So now I get weekly taxol with herceptin for 12 weeks. Then herceptin for the rest of the year. I worry because my MO toned it down, it won't be enough. I guess this is when we just have to trust...sigh.....

SpecialK

pbrain - here's the deal - your biggest benefit is most likely coming from Herceptin and the anti-hormonals that will come after chemo.  The chemo is given to assist the Herceptin, if you were not Her2+, you might not have been given chemo for a 1cm, grade 2 mass if your Oncotype DX was low.  Your ER+ will be handled with Tamoxifen or an AI depending on what is appropriate to prescribe.  I know it is easy to say, but don't worry.  Taxol is a good drug, and the TC was too much for you - doing more harm than good.