Chest Wall Margin 0.1mm after Mastectomy - radiation decision

BLinthedesert

NJS, I was actually making a distinction from "clinical" versus "radiologic" finding.  Meaning, some people are sent to receive a diagnostic mammogram/ultrasound because of a clinical finding - if this in fact shows a malignancy then this is a malignancy that has a clinical presentation.  If a malignancy was found as part of a screening (whether from a diagnostic or screening mammogram) then it is a "radiologic" finding.  Clinical presentations are a mass -- what I called "a lump" (that you can feel) or, in the case of IBC, skin/texture presentations.  My DCIS was found because my doctor felt a mass and sent me in for diagnostic mammogram/ultrasound.   I hope this clears up what I meant by "lump".  In theory, all DCIS is a "lump" ;-) within the context of comparing it with surrounding tissue.

 Lou, that is really interesting, thank you for the link.  There are many physicians here in the US that moving in the direction of prescribing tamoxifen more and more often.

Beesie, my RO said it would not matter to her - that she would recommend radiation regardless. 

Lolalee

Hi Beesie, Ok now have more information, but the decision is still hard. Pathologist said either Mx or Rx, not both. The RO said one or the other, to have both is overkill.  She did say that in her opinion Rx would be best Tx for me as it has less SE than Mx in terms of pain etc and in her opinion the SE are small.  She did say if it were an invasive or larger spread of DCIS she would not hesitate to recommend Mx but in my case it would be overtreatment to have both and at this stage she would recommend Rx for me.

I have just read a post on another site where a BC was treated with Rx and she said that all the SE she had read about are true.  She developed thyroid cancer 7 years after Rx and now dealing with leukaemia, says for sure that this is due to Rx, really unlucky! I guess that small percentage they talk about is there. So what to do! I need to decide fast as I am supposed to start Rx treatment next week and this would be my last chance. The RO did say that the planning showed the heart well away but a small part of the lung would be radiated. Just how much scatter would affect other parts of the chest was not discussed as I guess they do not really know for sure.

Any comments would be appreciated.

Thanks, Lola.

Lolalee

Hi Beesie, Ok now have more information, but the decision is still hard. Pathologist said either Mx or Rx, not both. The RO said one or the other, to have both is overkill.  She did say that in her opinion Rx would be best Tx for me as it has less SE than Mx in terms of pain etc and in her opinion the SE are small.  She did say if it were an invasive or larger spread of DCIS she would not hesitate to recommend Mx but in my case it would be overtreatment to have both and at this stage she would recommend Rx for me.

I have just read a post on another site where a BC was treated with Rx and she said that all the SE she had read about are true.  She developed thyroid cancer 7 years after Rx and now dealing with leukemia, says for sure that this is due to Rx, really unlucky! I guess that small percentage they talk about is there. So what to do! I need to decide fast as I am supposed to start Rx treatment next week and this would be my last chance. The RO did say that the planning showed the heart well away but a small part of the lung would be radiated. Just how much scatter would affect other parts of the chest was not discussed as I guess they do not really know for sure.

Any comments would be appreciated.

Thanks, Lola.

BLinthedesert

I had radiation and the SE were mimimal and tolerable.  Yes, my skin got red and itchy.  I was tired, but I still worked full-time and ran every day.  It took about 2 months before the underlying tissue did not pull -- but as I said before, this is likely due to the surgery on the chest wall and radiation exacerbated it - and this particular SE (tight chest muscles) is likely to be a significant SE after MX too.  There is a thread on the radiation site that talks about "good" radiation experiences (search for "I had a good radiation experience"), I think you should also read that thread ... many of the threads that discuss SEs give a slightly biased view, because many people that had radiation and did not have any lingering problems just move on and don't post their experiences on any of those threads.   

How comfortable you feel with a given treatment is a personal decision.  MX is a significant surgery, there are SE with any surgery - and breast surgery has its own possible long term effects (like lymphedema).  Radiation is a treatment that also has some SE (for most women these SE are minimal and short term).  

The questions you need to ask yourself: 1) do I want to risk a slightly higher recurrence risk with lumpectomy and radiation - less invasive surgery, along with a treatment that will have some SE, or 2) would I prefer to obtain the lowest risk possible with a more significant surgery (MX) - that also have the benefit of no further treatment.   

I also factored in time of recovery and my ability to function (both because of my job and the fact that I am a runner) -- for me, lumpectomy + radiation had the shorter recovery overall, and allowed me to function more normally during treatment/recovery (if you choose reconstruction it can take a significant amount of time to "finish" the process, and important to me was the fact that it would impair my ability to run). 

Beesie

Lola, it is a difficult decision!  And it's one that only you can make.  We each assess risk differently and we each fear different things so the best decision for me might not be the best decision for you.

RX comes with side effects.  Some are quite probable (skin problems) but are generally not serious and usually are temporary.  Others are more serious however the percent of women affected by these more serious side effects is very low.  

MX come with side effects. Here again, some are less serious but these are certain to happen and will affect you for the rest of your life (loss of sensation, for example).  Others are more serious (post-mastectomy pain syndrome, for example) but are less likely (although considerably more likely than the serious side effects from rads). For those who choose reconstruction there is the additional risk of complications and often there is a need for revision surgeries.   

So the question is whether you fear more the small chance of very serious side effects from rads or the greater risk of complications and side effects from a MX combined with the certainty of lifelong changes to your body from a MX.

Would you be considering reconstruction if you have the MX?  If so, you might want to read the reconstruction forum here to get an idea of what's involved.  And you can read the rads forum to see what it's like to get rads.  The one post you read from someone suffering serious side effects from rads is just a single case; reading through these forums will give you a better idea of what to expect based on the experiences of a wide range of women. 

BLinthedesert

here is the link to "good radiation experience" thread

LouLou40

Hi Lola,

Here is my story of close / involved margins, I did have IDC so not sure how relevent it is for your situation.

I had the same margin with my lumpectomy on the chest wall and my subutaneous margin showed IDC and DCIS still present. My surgeon disscused my path report with me and said while it didn't read so well he was confident he removed all visible cancer and the RADs would mop up any stray cells and no further surgery was recommended - also knew I was going to get chemo, so a different situation than you.

My Onc discussed it with my BS and said no further surgery was recommended, my rad Onc said a close margin on the chest wall was ok and rads was the right treatment rather than a mx.

I'm now approaching 4 yrs post lumpectomy and no issues, glad I still only had the lumpectomy and avoided further surgery, I was 40 and would have wanted recon which is a lengthy involved process.

I breezed through rads, only had a minor skin reaction with no breakdown and worked through all the way through rads.

Lou

Lolalee

Thank you for your reply LouLou. So glad to hear that you are doing so well. Sounds like your RT went well, did you have treatment in the supine position with 50 grays, which I believe is standard? I know that my RO is strongly pushing for that I just so wish I could make my mind up and get on with it. I am having tight chest pains trying to decide and have put everything on hold trouble is I keep wavering, one minute I have decided on RX and then I think of long term lung damage and go back to the MX.  I cancelled the surgery for 12th Sept whilst trying to sort out the margins and now need to wait until 25th Nov if I am to use the same team who I believe are very good.  They are p..... off with me so I don't think they are urgently trying to fit me in now.

Thank you again for your input.

Lolalee

Hi ZTeam, just wanted to say thank you for starting this post. I have been reading all your comments and they have been very helpful. It seems there are more and more of us now with the 1mm margin which most BS's do not mention as being a potential problem.

Hopefully you are well and truly recovered from your RX and doing well.  I am to make my decision by latest this weekend and it has truly been stressful.  This will be my last opportunity after that it can only be MX.  I do worry that there is DCIS still lurking and that only a MX would really show it to be the case. I guess in the short term I will not know. My RO just phoned and encouraged me to show for the appointment next week.  She seems really concerned and tried to allay my fears regarding RX long term SE but I just don't know.

Best wishes and many thanks, Lola.

LouLou40

Hi Lolalee, yes I did rads in the supine position and I believe I received the standard dose (I'm in Aus as well) once a day for 30 days which included 5 boosts to the tumour bed.

My BC was on the left and my rad Onc explained the field for my rads was curved to miss my heart and lungs, I remember having to breath in during on part to minimize lung exposure.

I actually had 2 tumours one deep and one just under the skin, so I had a large tumour bed, both showed on US and Mammo so it never really crossed my mind that more DCIS or IDC was left in the breat tissue undetected.

I found treatment descions easy as I have complete trust in my medical team, they have always discussed my treatment and laid all options on the table, probably helps that I'm a decisive person and not a worrier.

Hope your treatment goes well what ever you decide.

Lou

liv-

Lolalee

 just caught this thread and i dont know about margins and all that yet.

what i do know this is  such a huge decision and in some way i was lucky because i had no choice.....

....the mind boggles which way to go.

now what i see and have learnt of recurrence from anything relating to cancer i'm more  aware of how indiscriminately cancers comes back...with all the stats and things we are told, sadly it doesnt always go like the text its written on says...   sizes 0 .1 cm 15 cm  1.5 cm ....no nodes, many nodes, clear margins..its so unpredictable

in saying that i think a lot depends on us personally on making decisions like how much we are into our own breasts, how much do they mean to us,  having breasts for whatever reasons, sexually or fashion or whatever, its  an individual call...i know lots dont give a rats...for me i loved having breasts.

and what i also understand is that if you have a mastectomy without ever having had rads you can have reconstruction with implants the same time and that would  be a great outcome for many especially anyone that was not happy with the shape or size of their breasts....probably in your situation they would save your nipples which is a huge bonus....but if you have had rads first and need a mastectomy later you cant have implants because of the damage to inside breast and the implant hardens.

...i know i sound a bit flippant but its reality, i didnt like my breasts and had implants just before i was diagnosed with ibc, loved implants and if had the opportunity in the future would do again in a heartbeat.

if you have rads and keep you breasts that would also be a good outcome with peace of mind that they  mopped up any remaining bits.

its such a big call and i would have hated to have to make the call..

 and finally what would i do??

yep i would  do mast with implants immediately....or go with radiation and keep my own breasts if that were possible.... the decider for me would be, do i love the shape and size of my breasts?...  or do i get a brand new set

 ............but i would do something....either one!

hope this has not confused you more and i hope you make a decision without too much stress...

much luvs

x

Lolalee

Hi everyone, not sure if anyone still looks at this thread but I felt I should update my progress just in case anyone visits.

Firtstly I would like to thank everyone who replied with valuable information, really appreciate it.

Mx was performed on 13th November.  Path report showed additional DCIS not far from the original.  BS thought this was part of the original DCIS and as Beesie had correctly described DCIS can run along a duct and skip. This was not picked up on original scans so it is scary how Dx is not always correct.

I am now 6 weeks post Mx and recovering well.  Some issues with scar healing and have had 4 fills.  Probably need another 2 or so and hopefully finish mid February. So happy that I am not experiencing any pain at this stage.  I did fear the burning sensation I have read about, not sure if this can still happen however, hope not.

Rx was not recommended following Mx.

Thanks again, best Lola.