Re growth after surgery 2010. What to do now,

[Sandrawoody]

With a 2.5cm tumour successfully removed in Mar 2010, no post op complications , no facial nerve injury , and the miracle of maintaining a functional level of hearing in my an side, regular MRI , only showing scar tissue from the previous surgery.
You can imagine how devastated l felt to be told that the tumour had in fact begun to grow back.
Between 2 scans , which were 18 months apart,there is clear indication that tumour is in fact there, and growing larger.
Having consulted with both the brilliant surgeons, who had so successfully given me back such a wonderful quality of life, "How could this be ", ?

They both felt at the time that they had successfully removed all that they could see, l now find myself being a little overwhelmed with the thought of what to do next.
Surgery , with all its inherent risks, is it wise to attempt it again, if the outcome cannot be guaranteed. How many times can we face brain surgery ?

I do have the other option of radiation, l am currently 51, live in Australia, and l find it difficult at the moment getting enough long term information about how successful this treatment can be....

Trying to find other AN patients, who may have been down this path before, or even those who may be able to offer some advice.
My greatest hurdle is just trying to come to terms with the thought , that this is happening all over again !!!!.

For 4 years, l have just gone from strength to strength, and this has totally taken the wind out of my sails......

I would be grateful for any feed back on this issue

[Jim Scott]

Sandra ~

I'm sorry to learn of your re-growth, the '800 pound gorilla' that all post-op AN patients fear.  I would seriously consider looking into radiation treatment to treat the re-growth.  I underwent debulking surgery on a large AN, then radiation (FSR) in a planned sequence and it was very successful.

P.S. Please do not post identical messages in more than one forum.  Thanks.

Jim

[Tod]

Sandra,

Unhappily, this happens. I underwent 32 hours of surgery and spent two weeks in ICU and entubated for six days. I lost my voice for that first year and struggled through other challenges only to be told a mere 21 months after surgery that the tumor was indeed growing. I won't say I was devastated as I had expected this since they could not get it all, but I had hoped to not face this prospect. That day was rather sad.

However, we do what must to survive and move on. My surgeon set me with a colleague who is a radiation oncologist at the same hospital and a couple of months later I went through 28 sessions of FSR. During my second week of FSR I celebrated my 50th birthday.

My tumor is right on an artery and thus has a very good food supply. I am resigned to the possibility that some day I may face this again, but I also have read enough on this forum and elsewhere that radiation is very successful for treating these tumors. Maybe not a 100%, but perhaps in the 90% or greater range.

Hang in there. Talk to your doctors, do your research, there is a probably a good chance that radiation will be an appropriate and likely successful option for you. I'm sure others will provide ample evidence of the research on the various types  of radiation therapy.

-Tod

[sandyinwisconsin]

I would do radiation too.  The more treatments you have, such as 27 versus 1 or 3 would help save your hearing.

Its called Fractionaed Stereotactic Radiotherapy.

Sandy

[joanna_an]

Hi Sandra,

I assume you've gone with the retrosig surgery approach. Although it can save hearing there is a substantial incidence of tumor regrowth.. If I ever decide on surgery I would go for translab. Let me guess? Were the surgeons mr Briggs and prof Kaye?
I would say either do the translab or the fractionated... There is a GK center in Sydney but they are there only for 3 years now.. And it seems to me that fractionated is safer and it saves hearing better than a one-off procedure, but it's up to you..
If you have some time.. (I don't know how small is yours) you could try a month of wheatgrass juice therapy.. I am growing myself right now some trays.. I heard some rumors that it might work.. However, I am only giving it a month.. If it doesn't do anything I am taking action.

Joanna.

[leapyrtwins]

I assume you've gone with the retrosig surgery approach. Although it can save hearing there is a substantial incidence of tumor regrowth..

Huh?    Do you have any research that backs this up?

I had retrosig in 2007 and have had no regrowth.  I'm not an AN expert, but as far as I know the incidences of regrowth aren't any greater when the retrosigmoid approach is done compared to the translab approach.

Unfortunately, tumor regrowth happens - as Tod said.  It happens to patients regardless of surgical approach used.  It's important to remember that during surgery even one small cell left behind has the potential to lead to regrowth.  Surgeons do their best to remove ANs entirely, but they aren't infallible. 

Neither surgeons nor surgical approaches should be blamed.  The best thing to do is move on and deal with the situation @ hand.

Jan

[New girl]

I am also curious if there is any data proving that there is an increased chance of regrowth with retrosigmoid.  I chose retrosig to try to save as much hearing as possible.  In all my research I did not come across any stats which showed increased chances of regrowth.  Is this with certain size tumors?

[joanna_an]

Hi all..

I am sorry if I didn't back up my statement.. This is what I have been told by a surgeon who said that he dropped the retrosig approach.. He only does translab now.. If he lied, I don't know.. Maybe he wasn't comfortable with surgery via retrosig and made up excuses, or his stats were bad or that's actually the truth.. When I saw another surgeon he asked me to choose between retrosig and translab and said I chose translab cause I heard retrosig causes troubles... He didn't disagree.. He just smiled and said I think you're making the right choice.. The point here is he didn't argue with me.. But no, I didn't specifically mention the regrowth.

I would be really interested in starting a poll about regrowth after surgery and see how often happened after retrosig as opposed to translab.. I think it would give us some indication.. I really don't like to bring down anyone who had the retrosig. It is a difficult surgery and no one wants to do it twice..

Can we start a poll?

Joanna.

[Tod]

A poll based strictly on surgery types would result in nonsense information.

First, the group here is pretty much self-selected and probably is not truly representative of all patients having had surgery for treatment of ANs.

Second, without collecting additional information about size, location, amount of tumor left behind, and proximity to a blood supply, it would be impossible make meanignful correlations, let alone statements of causation. Designing a poll to do this properly would not be done overnight and should not be done lightly. The potential for future patients to misinterpret the value of the results and the application to their specific case.

Third, "amount of tumor left behind" and "proximity to a blood supply" would be imprecise estimates. Even if a surgeon claims to have removed 100% of the tumor, that only means that he or she did not see a remaining cell. We live in a marvelous time, but the technology still has significant limits.

Finally, there are a small number of cases, like mine, where the surgical team used both approaches or a combined approach.

More importantly, I think if one looks at the cases of regrowth and notices a larger number of cases linked to retrosigmoid, it seems more likely to be related to the location of the tumor and relative accessibility. Not all patients have the choice of surgical approach as surgeon may prefer/recommend a specific approach to meet the needs of the patient. Thus, the harder it is to access the tumor, the more likely viable tissue is left behind and if those tumors can only be substantially accessed by RS and not at all, or minimally, by TL, then of course there is correlation. Such a correlation would not reflect a fault of the surgery, only the difficulty of the tumor.

I really urge treading lightly on any such polls. Also, there are projects in the US to develop this kind of data since every tumor/cancer is reported to the Centers for Disease Control National Program of Cancer Registries and there are ongoing projects to make better use of the data collected - which include treatment outcomes.

-Tod

[joanna_an]

Hi..

Please have a look at this thread.. What Jamie posted..

http://www.anausa.org/smf/index.php?topic=480.msg3168#msg3168

[joanna_an]

The peer review study that compares the two options.. Surgery vs radiation.. It doesn't say retrosig but refers to the surgical procedure as one that attempts hearing preservation, which translab doesn't.. So in the attempt to preserve hearing, tumor may be left behind which causes the regrowth.. Surely, there can be tumor left behind with translab on the facial nerve which may regrow..

[rupert]

It's pretty standard nowadays to leave a sliver of the tumor  and then follow up with either GK or CK in about 6 months.  Less chance of any facial nerve problems this way.

[leapyrtwins]

It's pretty standard nowadays to leave a sliver of the tumor  and then follow up with either GK or CK in about 6 months.

Not necessarily true; depends on the size of the tumor.  What you're talking about is called debulking - and it's typically only done with large(r) tumors.

Sometimes it's done on smaller tumors, if the location warrants it.

It's standard procedure during AN surgery to monitor the facial nerve (with a machine) so that the surgeons don't get too close to it.  My AN was on the 7th & 8th cranial nerves.  I had facial nerve monitoring during surgery.

[leapyrtwins]

The peer review study that compares the two options.. Surgery vs radiation.. It doesn't say retrosig but refers to the surgical procedure as one that attempts hearing preservation, which translab doesn't

The study could be referring to mid-fossa approach - which gives the patient the best possibility of retaining hearing.

Mid-fossa approach isn't something that everyone is "eligible" for - depends greatly on the size and location of the AN.

While retrosigmoid (aka sub-occipital) approach gives the patient some chance of hearing preservation the odds aren't good; generally much less than 50/50.

[Sandrawoody]

Hi Everyone,

Interesting debate. My surgeons felt it gave them a better look at the tumour pressing against the brain stem.
Another factor was  the fact that l had no real hearing loss in the affected ear , despite a 2.5cm tumour. They had hoped to preserve hearing, but did suggest that it would likely be damaged.
So it was a fantastic outcome to walk away with very little side effects.....my hearing to this day is very good in the AN side.

Having discussed surgery for the second time, they have said they would use the translab approach. The consequence would be to lose all hearing in the AN side, something which they have said l should really consider, seeing that l have such good hearing.

That is where the radiation debate begins, can it control the tumour, without affecting the hearing.

 Here in Australia,  my surgical team went in with the plan to remove everything, as they say, if one little cell remains behind, it has the possibility of regrowth.
It seems to me that there is no simple solution. And so you wonder, would surgery be any more successful the 2 time round.